Dental tourism industry exploits workers in Mexico


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Research calls for global regulation of dental tourism – to prevent poor working conditions for local populations serving a wealth North American elite.
(Shutterstock)

Krystyna Adams, Simon Fraser University

The town of Los Algodones in Mexico is nicknamed “Molar City”. It has a population of just 6,000 people and, shockingly, it has more than 500 practising dentists. This has produced an intense clustering of dental clinics within a four block radius.

Many of these dentists chose to work in this town because of the tourist traffic, given its proximity to the Mexico-United States border. Thousands of Canadian and American tourists park their cars and walk across the border into Los Algodones to spend the day souvenir shopping, eating and drinking in the local restaurants, and purchasing alcohol, prescription drugs and dental care at lower costs than available back home.

In 2015 and 2016, I spent four months living in Los Algodones conducting interviews and participating in local events for a doctoral research project in health sciences at Simon Fraser University. My work investigates dental travel as part of the wider phenomenon of “medical tourism” — an industry that is growing rapidly as more and more patients seek access to new or more affordable medical treatments outside of their countries of residence.

My research raises concerns about exploitative industry practices in Los Algodones, Mexico. These include poor working conditions and discriminatory practices for employees in dental clinics, harassment of Indigenous street vendors and lack of access to dental care for local residents.

Inside ‘Molar City’

Most of the residents and employees I met during my research in Los Algdones were grateful for the much-needed economic benefits of the dental tourism industry. But I also heard concerns and frustrations from members of the local population. They felt that many of the industry activities were unfair and difficult to change.

One interviewee explained how dental tourists often come with prejudiced assumptions about Mexico, stating: “We see a lot of racism […] people trying to come here and saying, okay it is Mexico, I can ask for anything and pay you less.”

There are more than 500 dentists practising in dental clinics like this one in Los Algodones.
(Krystyna Adams), Author provided

Local residents and industry employees felt that dental tourists’ perceptions of Mexico as unsafe and underdeveloped are driving poor working conditions and discriminatory practices.

For example, employees work long hours to promote Los Algodones’ reputation for their employers as an ideal site to purchase dental care. Some also said they had experienced harassment from dental tourists negotiating lower prices and faster care.

Harassment of Indigenous vendors

Clinic employees and local residents also experience stressful interactions in the industry to meet the expectations of clinic owners. Some owners encourage employees to minimize their Mexican accents. This is done to distance Los Algodones from prejudiced perceptions of Mexico as an underdeveloped place with inferior medical care.

One participant described how a dental clinic owner offered to pay him to dump buckets of water on the heads of Indigenous souvenir vendors working near his clinic. Along with harassment, clinic owners also encourage Indigenous vendors to “stay cool, sell stuff cheap, and smile to people.” Many owners worry that the presence of Indigenous vendors might deter tourists by representing the underdeveloped Mexico of tourists’ imaginations.

Tourists enjoying a promotional party in support of Los Algodones’ dental tourism industry.
(Krystyna Adams), Author provided

Local residents struggle to access dental care

My research also revealed that dental clinic owners’ concerns about reputation can decrease access to dental care for local residents. Clinic owners suggested they’re too busy marketing their services and treating foreign patients to treat many locals. Some owners are using free X-rays to entice tourists, who shop around for their ideal care.

Most of the dental services in Los Algodones are also focused on the provision of major restorative treatment rather than preventative care, given the needs of dental tourists. Most local residents cannot afford this type of care. This is concerning as there are limited publicly funded dental care options available in this region of Mexico.

Overall, the “dental Shangri-la of the Mexican desert” is only an oasis for those able and willing to travel and pay for dental care. For many, the industry provides much-needed employment. But this might be stressful, unfair work for individuals unable to use the dental oasis for their own health needs.

The need for global regulation

Participation in the global medical tourism industry is increasing and research shows that this growth raises serious ethical challenges, at least in the industry’s current form. Researchers have raised concerns about the negative impacts on the health of local people who live and work in these medical tourism destinations.

My in-depth investigation of industry practices in the town of Los Algodones provides more evidence to support these concerns. It suggests the need for better global regulation of dental tourism and medical tourism more widely.

This regulation is needed to avoid competition between industry sites driving down labour standards in the global industry and diverting health resources away from populations in need. This regulation could enforce acceptable work conditions to avoid a race-to-the-bottom effect as industry sites try to attract customers to lower-cost, desirable medical care.

The ConversationMore information about these concerns could also help individuals participating in the industry to avoid harmful practices. It could remind medical tourists that cost savings for care might come at a cost to fair labour standards — and that they should allow sufficient time for treatment and be prepared to pay fair prices.

Krystyna Adams, Doctoral student in Health Sciences and SFU Medical Tourism Research Group, Simon Fraser University

This article was originally published on The Conversation. Read the original article.

Eat less meat, save species and ecosystems, says WWF UK

 

In Latin America, is there a link between abortion rights and democracy?

Larissa Arroyo Navarrete, University of Costa Rica

Three-quarters of all abortions in Latin America are performed illegally, putting the woman’s life at risk. Together with Africa and Asia, the region accounts for many of the 17.1 million unsafe abortions performed globally each year, according to a new report in The Lancet, published jointly with the Guttmacher Institute, a research and policy group.

Though worrying, this fact is unsurprising in a region where six countries ban abortion under all circumstances: the Dominican Republic, El Salvador, Haiti, Honduras, Nicaragua and Suriname. Such complete criminalization, even when fetal termination is necessary to save a woman’s life, exists in only two other places in the world: Malta and the Vatican.

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Numerous studies confirm that restrictive laws do not in any way prevent women from seeking or getting abortions. And in the vast majority of Latin American countries – including Argentina, Bolivia, Colombia, Ecuador, Venezuela and, since August 2017, Chile – this medical procedure is legal, though it generally requires specific justification, such as maternal health or rape.

Not so in Central America, home to three of the eight countries in the world with total abortion bans. As I am a Costa Rican lawyer and feminist, to me, it’s no small matter that women in many neighboring countries lack access to this basic health service.

Why does this region so studiously avoid recognizing women as full individuals entitled to their own human rights? In my view, there’s a clear link in Latin America between the state of a country’s democracy and the reproductive rights of its female citizens.

Neighbors Honduras, Nicaragua and El Salvador are among the few countries in the world with total abortion bans.
Cacahuate/Wikimedia, CC BY

Honduras: Land of inequality

In Honduras, for example, it was only after the 2009 coup d’état that ousted President Manuel Zelaya – a huge democratic setback that ushered in an era of violence – that the country passed a total ban on abortion.

Today, women must carry to term even a pregnancy that endangers their life, and emergency contraception is heavily penalized. These restrictions were reaffirmed by the Supreme Court in 2012.

Despite efforts by human rights defenders and official statements by the United Nations, independent experts and NGOs like Amnesty International, there has been no material progress in advancing the reproductive rights of Honduran women.

In some ways, this is not surprising. In post-coup Honduras, human rights violations – ranging from violence and poverty to impunity – are routine fare for the entire population. Rampant gender inequality is just another symptom of this dismal situation.

Nicaragua and El Salvador: Dangerous setbacks

The situation in Nicaragua, just to the south, is similar. There, “therapeautic abortion” – the common parlance for ending a pregnancy for health-related reasons – was acceptable from 1837 until relatively recently. But starting in 2007, President Daniel Ortega, who has modified the Constitution to end term limits, began passing legal amendments to ban abortions completely, without any exceptions.

Ortega supported abortion rights during his first presidency, in the 1980s. But he has since embraced the Catholic Church’s position of strong opposition, with deadly consequences for Nicaraguan women.

In 2010, for example, a pregnant woman who went by the pseudonym of “Amelia” was refused treatment for metastatic cancer because the state ruled that the regime of chemotherapy and radiotherapy – which her doctor had urgently recommended – might trigger a miscarriage.

The Inter-American Commission on Human Rights ultimately issued injunctions for Amelia, but the damage was already done. She died in 2011.

Impossible though it may seem, women fare worse in El Salvador, a civil war-torn country rife with violence, unpunished crimes and criminal infiltration of the police. In 1999, El Salvador constitutionally mandated that human life starts at the moment of conception.

This legal argument is now used to uphold a full criminalization of abortion, even under the most extenuating circumstances, such as when a woman’s life is at risk, the pregnancy is the result of rape or the fetus is severely malformed.

Anti-abortion sentiment is so virulent in El Salvador today that even miscarriages may be investigated on suspicion that they were self-induced. This persecution has had lethal consequences: Women who’ve spontaneously lost a pregnancy have been accused of murder, sometimes by even their own law-abiding relatives.

In 2016, Sweden offered political asylum to a Salvadoran woman who was sentenced to 40 years of prison for the aggravated homicide of a fetus miscarried before she even knew she was pregnant.

The United Nations Committee on the Elimination of all Forms of Discrimination Against Women has requested that El Salvador decriminalize abortion, saying that the fact that most women prosecuted and sentenced for this crime are among the country’s most vulnerable citizens – young, uneducated, jobless and single – represents a powerful social injustice.

Women’s citizenship

Though there are great economic, cultural and political differences between these three countries, across Central America the connection between the lack of rule of law and women’s restricted reproductive rights is noteworthy.

That’s because denying women the ability to make decisions about their own bodies means that a woman’s life matters only to the extent that she is the custodian of a potential future life, rather than as a life worthy of protection.

The Constitutional Court of Colombia agrees. In 2006, it stated in its legal justification for decriminalizing abortion, “The dignity of women does not permit that they be considered mere receptacles.”

In Chile, which recently legalized abortion after nearly a half-century of its total prohibition, history shows a similar relationship between democracy and women’s rights. In 1931, the Chilean Congress approved the voluntary interruption of pregnancy for medical purposes if the woman’s life was endangered or the fetus was not viable.

This exception remained in place until, in 1973, under the dictatorship of Augustin Pinochet, abortion became illegal. In 1980, the Chilean Constitution established that the law protected the life “of the unborn,” indicating that the life of a woman was worth less than that of an embryo.

Feminists in Chile celebrated three new exceptions to the abortion ban – mother’s health, fetal health, rape – but also wondered what took so long.
Corporación Miles Chile

Even after democracy was restored to Chile, in 1991, this ban remained in place. It was not until August 2017, some 26 years later, that the country adopted a more sensible approach, focused on protecting women’s lives and health. The Chilean case demonstrates that once women lose their value as individuals in the eyes of the state, it is difficult to win back.

What’s at risk in the Latin American regimes where abortion is still forbidden, then, are not only women’s lives but also the political systems of Central American society itself. Can democracy exist in places that don’t recognize women as people?

The ConversationLee en español.

Larissa Arroyo Navarrete, Professor of Human Rights, University of Costa Rica

This article was originally published on The Conversation. Read the original article.

Happiness is all in your mind

Okay, that is a slight oversimplification. (Ask any boat refugee, particularly one that is about to drown. Or a child that is being abused.)

But aside from that, it’s true.

Except, it is very easy in some circumstances and very hard in other situations. It is much harder to be happy when you’re cold and hungry, for example. Takes more effort.

Investing in warmer housing could save the NHS billions

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Bitterly cold.
Ruslan Guzov/Shutterstock

Dr Nathan Bray, Bangor University; Eira Winrow, Bangor University, and Rhiannon Tudor Edwards, Bangor University

British weather isn’t much to write home about. The temperate maritime climate makes for summers which are relatively warm and winters which are relatively cold. But despite rarely experiencing extremely cold weather, the UK has a problem with significantly more people dying during the winter compared to the rest of the year. In fact, 2.6m excess winter deaths have occurred since records began in 1950 – that’s equivalent to the entire population of Manchester.

Although the government has been collecting data on excess winter deaths – that is, the difference between the number of deaths that occur from December to March compared to the rest of the year – for almost 70 years, the annual statistics are still shocking. In the winter of 2014/15, there were a staggering 43,900 excess deaths, the highest recorded figure since 1999/2000. In the last 10 years, there has only been one winter where less than 20,000 excess deaths occurred: 2013/14. Although excess winter deaths have been steadily declining since records began, in the winter of 2015/16 there were still 24,300.

According to official statistics, respiratory disease is the underlying cause for over a third of excess winter deaths, predominantly due to pneumonia and influenza. About three-quarters of these excess respiratory deaths occur in people aged 75 or over. Unsurprisingly, cold homes (particularly those below 16°C) cause a substantially increased risk of respiratory disease and older people are significantly more likely to have difficulty heating their homes.

Health and homes

The UK is currently in the midst of a housing crisis – and not just due to a lack of homes. According to a 2017 government report, a fifth of all homes in England fail to meet the Decent Homes Standard – which is aimed at bringing all council and housing association homes up to a minimum level. Despite the explicit guidelines, an astonishing 16% of private rented homes and 12% of housing association homes still have no form of central heating.

Even when people have adequate housing, the cost of energy and fuel can be a major issue. Government schemes, such as the affordable warmth grant, have been implemented to help low income households increase indoor warmth and energy efficiency. However, approximately 2.5m households in England (about one in nine) are still in fuel poverty – struggling to keep their homes adequately warm due to the cost of energy and fuel – and this figure is rising.

Poor housing costs the NHS a whopping £1.4 billion every year. Reports indicate that the health impact of poor housing is almost on a par with that of smoking and alcohol. Clearly, significant public health gains could be made through high quality, cost-effective home improvements, particulalrly for social housing. Take insulation, for example: evidence shows that properly fitted and safe insulation can increase indoor warmth, reduce damp, and improve respiratory health, which in turn reduces work and school absenteeism, and use of health services.

Warmth on prescription

In our recent research, we examined whether warmer social housing could improve population health and reduce use of NHS services in the northeast of England. To do this, we analysed the costs and outcomes associated with retrofitting social housing with new combi-boilers and double glazed windows.

After the housing improvements had been installed, NHS service use costs reduced by 16% per household – equating to an estimated NHS cost reduction of over £20,000 in just six months for the full cohort of 228 households. This reduction was offset by the initial expense of the housing improvements (around £3,725 per household), but if these results could be replicated and sustained, the NHS could eventually save millions of pounds over the lifetime of the new boilers and windows.

The benefits were not confined to NHS savings. We also found that the overall health status and financial satisfaction of main tenants significantly improved. Furthermore, over a third of households were no longer exhibiting signs of fuel poverty – households were subsequently able to heat all rooms in the home, where previously most had left one room unheated due to energy costs.

Perhaps it is time to think beyond medicines and surgery when we consider the remit of the NHS for improving health, and start looking into more projects like this. NHS-provided “boilers on prescription” have already been trialled in Sunderland with positive results. This sort of cross-government thinking promotes a nuanced approach to health and social care.

The ConversationWe don’t need to assume that the NHS should foot the bill entirely for ill health related to housing, for instance the Treasury could establish a cross-government approach by investing in housing to simultaneously save NHS money. A £10 billion investment into better housing could pay for itself in just seven years through NHS cost savings. With a growing need to prevent ill health and avoidable death, maybe it’s time for the government to think creatively right across the public sector, and adopt a new slogan: improving health by any means necessary.

Dr Nathan Bray, Research Officer in Health Economics, Bangor University; Eira Winrow, PhD Research Candidate and Research Project Support Officer, Bangor University, and Rhiannon Tudor Edwards, Professor of Health Economics, Bangor University

This article was originally published on The Conversation. Read the original article.

Should Uncle Sam ‘send in the Marines’ after hurricanes?

Julia Brooks, Harvard University and David Polatty, US Naval War College

When humanitarian emergencies flare up, what should prompt the U.S. government to “send in the Marines”?

Disasters like Hurricane Harvey’s floods in Houston and Hurricane Maria’s devastation of Puerto Rico’s roads and power grid can quickly overwhelm civilian authorities and emergency responders. Military support can make a life-or-death difference in those emergencies.

As scholars at the U.S. Naval War College and Harvard Humanitarian Initiative, we have seen that the military can have a profound and positive impact on the immediate response to large-scale disasters such as Hurricanes Harvey, Irma and Maria or the Haiti earthquake in 2010.

But soldiers, sailors, marines and aviators are primarily trained to fight, not feed disaster victims. When they report for humanitarian duties, it typically costs far more than when civilians handle them. Does their muscle actually go to good use?

Why deploy the military

Nonprofits like the Red Cross and government agencies like FEMA simply don’t have the equipment required following disasters like the one unfolding in Puerto Rico – where millions of people may lack power and clean drinking water for months.

Only the military can promptly dispatch the ships and planes required to move people, supplies and fuel. It has the electrical generators, water purifiers, bulldozers and lift equipment for search and rescue operations, debris removal and reconstruction.

At the same time, many military personnel also report that aid missions are good for morale, as countless service members take pride in doing disaster relief.

Having soldiers or sailors airlift people from their flooded homes or distribute hot meals is also great public relations at a time when the U.S. military is engaged in several unpopular and protracted conflicts abroad.

Domestic limits

While military missions can fill critical gaps in response to large-scale natural disasters like Hurricanes Harvey, Irma and Maria, there are also significant limits to the military’s ability to jump in.

For one, there are laws restricting U.S. military operations on U.S. soil. The Posse Comitatus Act of 1878 prohibits active duty military personnel from engaging in civilian law enforcement, although the National Guard may be deployed in some circumstances.

Also, under a law known as the Stafford Act of 1988, the Department of Homeland Security may request military assistance as a last resort in major disasters and emergencies.

These restrictions have loosened up a little since the 9/11 terrorist attacks, granting the military and National Guard more leeway to support domestic counterterrorism operations. These changes made it easier for the military and National Guard to respond to the recent hurricanes.

But there are no such legal restrictions on how the U.S. military may respond to foreign disasters, as long as host governments request help or consent to it.

A common call

According to the Center for Naval Analyses, a federally funded defense research center, the U.S. military diverted units from “routine” operations to conduct humanitarian assistance operations 366 times from 1970 to 2000, compared with 22 times for combat missions.

Since 2000, the U.S. armed forces have conducted many massive humanitarian operations around the globe, such as responding to the 2004 Indian Ocean earthquake and tsunami and the 2015 Nepal earthquake, as well as Superstorm Sandy and Hurricane Katrina at home.

Given how frequently the military undertakes these missions, preparing for them should be a high priority. But that is not the case. With few notable exceptions, soldiers, sailors, marines and aviators spend little if any time training for disaster-response strategies, tactics, policies and procedures.

Concerns

When the same people fight wars and distribute food to people in distress, it can quickly blur the lines, exposing aid workers to attack.

That is why aid workers for nonprofit organizations like Doctors Without Borders and Oxfam have expressed concerns about what they see as a growing “militarization” of humanitarian relief that endangers their own safety and hinders their effectiveness.

There is also the high cost of having boots on the ground doing civilian work.

Consider what happened when the U.S. military responded rapidly after the 2010 earthquake in Haiti that left 220,000 people dead, 300,000 injured and 1,500,000 people displaced. More than a third of the total of US$1.12 billion in U.S. aid – $453.5 million – covered the costs of military transport, personnel and supplies.

According to estimates by Aruna Apte at the Naval Postgraduate School and Keenan Yoho at Rollins College, the U.S. spent more than $17 million just to operate a single aircraft carrier nearby for 17 days – not counting personnel costs.

Aircraft carriers are essentially floating airfields that make it easier to access otherwise impossible-to-reach areas, facilitating evacuations. Although they can dispatch critical food, water and medicine, there are usually better ways to deliver aid after disasters.

For context, that $17 million could have covered the cost of all of the humanitarian organization Save the Children’s health programs in Haiti between 2010 and 2012.

Finding the balance

Despite the big price tag, military involvement in disaster relief is bound to grow. That’s because global humanitarian organizations are already stretched thin by competing needs.
Conflict-driven migration is growing, and severe storms are becoming more common as a result of climate change – along with the higher sea levels scientists say it is causing.

Meanwhile, the Trump administration wants to cut civilian government spending while boosting the Pentagon’s budget.

But we believe it would be a huge mistake for the government to rely primarily on the armed forces in the aftermath of disasters.

The military’s unique capacity can be incredibly useful in the short term. Yet even when its help is most needed, these deployments should be brief and tailored.

The ConversationOther than in the immediate aftermath of the biggest emergencies, the government should activate civilian emergency responders and humanitarian aid groups instead of sending the Marines.

Julia Brooks, Researcher in international law and humanitarian response, Harvard Humanitarian Initiative (HHI), Harvard University and David Polatty, Director, Civilian-Military Humanitarian Response Program, US Naval War College

This article was originally published on The Conversation. Read the original article.

The murky issue of whether the public supports assisted dying

Katherine Sleeman, King’s College London

The High Court has rejected a judicial review challenging the current law which prohibits assisted dying in the UK. Noel Conway, a 67-year-old retired lecturer who was diagnosed with Motor Neurone Disease in 2014, was fighting for the right to have medical assistance to bring about his death. Commenting after the judgement on October 5, his solicitor indicated that permission will now be sought to take the case to the appeal courts.

Campaigners are often quick to highlight the strength of public support in favour of assisted dying, arguing that the current law is undemocratic. But there are reasons to question the results of polls on this sensitive and emotional issue.

There have been numerous surveys and opinion polls on public attitudes towards assisted dying in recent years. The British Social Attitudes (BSA) Survey, which has asked this question sequentially since the 1980s, has shown slowly increasing public support. Asked: “Suppose a person has a painful incurable disease. Do you think that doctors should be allowed by law to end the patient’s life, if the patient requests it?” in 1984, 75% of people surveyed agreed. By 1989, 79% of people agreed with the statement, and in 1994 it had gone up to 82%.

Detail of the question matters

But not surprisingly, the acceptability of assisted dying varies according to the precise context. The 2005 BSA survey asked in more depth about attitudes towards assisted dying and end of life care. While 80% of respondents agreed with the original question, support fell to 45% for assisted dying for illnesses that were incurable and painful but not terminal.

A 2010 ComRes-BBC survey also found that the incurable nature of illness was critical. In this survey, while 74% of respondents supported assisted suicide if an illness was terminal, this fell to 45% if it was not.

Wording counts.
from http://www.shutterstock.com

It may not be surprising that support varies considerably according to the nature of the condition described, but it is important. First, because the neat tick boxes on polls belie the messy reality of determining prognosis for an individual patient. Second, because of the potential for drift in who might be eligible once assisted dying is legalised. This has happened in countries such as Belgium which became the first country to authorise euthanasia for children in 2014, and more recently in Canada where within months of the 2016 legalisation of medical assistance in dying, the possibility of extending the law to those with purely psychological suffering was announced.

It’s not just diagnosis or even prognosis that influences opinion. In the US, Gallup surveys carried out since the 1990s have shown that support for assisted dying hinges on the precise terminology used to describe it. In its 2013 poll, 70% of respondents supported “end the patient’s life by some painless means” whereas only 51% supported “assisting the patient to commit suicide”. This gap shrank considerably in 2015 – possibly as a result of the Brittany Maynard case. Maynard, a high-profile advocate of assisted dying who had terminal cancer, moved from California to Oregon to take advantage of the Oregon Death with Dignity law in 2014.

Even so, campaigning organisations for assisted dying tend to avoid the word “suicide”. Language is emotive, but if we want to truly gauge public opinion, we need to understand this issue, not gloss over it.

Information changes minds

Support for assisted dying is crucially known to drop-off simply when key information is provided. Back in the UK, a ComRes/CARE poll in 2014 showed 73% of people surveyed agreed with legalisation of a bill which enables: “Mentally competent adults in the UK who are terminally ill, and who have declared a clear and settled intention to end their own life, to be provided with assistance to commit suicide by self-administering lethal drugs.” But 42% of these same people subsequently changed their mind when some of the empirical arguments against assisted dying were highlighted to them – such as the risk of people feeling pressured to end their lives so as not to be a burden on loved ones.

This is not just a theoretical phenomenon. In 2012, a question over legalising assisted dying was put on the ballot paper in Massachusetts, one of the most liberal US states. Support for legalisation fell in the weeks prior to vote, as arguments against legalisation were aired, and complexities became apparent. In the end, the Massachusetts proposition was defeated by 51% to 49%. Public opinion polls, in the absence of public debate, may gather responses that are reflexive rather than informed.

The ConversationPolls are powerful tools for democratic change. While opinion polls do show the majority of people support legalisation of assisted dying, the same polls also show that the issue is far from clear. It is murky, and depends on the responder’s awareness of the complexities of assisted dying, the context of the question asked, and its precise language. If we can conclude anything from these polls, it is not the proportion of people who do or don’t support legislation, but how easily people can change their views.

Katherine Sleeman, NIHR Clinician Scientist and Honorary Consultant in Palliative Medicine, King’s College London

This article was originally published on The Conversation. Read the original article.

Dissociative identity disorder exists and is the result of childhood trauma

 

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Dissociative identity disorder is a serious and valid mental illness.
Irudayam/Flickr, CC BY

Michael Salter, Western Sydney University; Adjunct Professor Warwick Middleton, The University of Queensland, and Martin Dorahy

Once known as multiple personality disorder, dissociative identity disorder remains one of the most intriguing but poorly understood mental illnesses. Research and clinical experience indicate people diagnosed with the condition have been victims of sexual abuse or other forms of criminal mistreatment.

But a vocal group of academics and health professionals have claimed dissociative identity disorder, and reports of trauma associated with it, are created by therapists and the media. They say these don’t reflect genuine symptoms or accurate memories.

Media references to dissociative identity disorder are also often highly stigmatising. The recent movie Split depicted a person with the condition as a psychopathic murderer. Even supposedly factual reporting can present people with dissociative identity disorder as untrustworthy and prone to wild fantasies and false memories.

But research hasn’t found people with the disorder are more prone to “false memories” than others. And brain imaging studies show significant differences in brain activity between people with dissociative identity disorder and other groups, including those who have been trained to mimic the disorder.

What is it?

Dissociative identity disorder has been studied by doctors and scientists for well over 100 years. In 1980, it was called multiple personality disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM), which outlines the symptoms of psychiatric conditions. Its name was changed in the 1994 edition of the DSM.


Read more: What is the DSM and how are mental disorders diagnosed?


Dissociative identity disorder comes about when a child’s psychological development is disrupted by early repetitive trauma that prevents the normal processes of consolidating a core sense of identity. Reports of childhood trauma in people with dissociative identity disorder (that have been substantiated) include burning, mutilation and exploitation. Sexual abuse is also routinely reported, alongside emotional abuse and neglect.

In response to overwhelming trauma, the child develops multiple, often conflicting, states or identities. These mirror the radical contradictions in their early attachments and social and family environments – for instance, a parent who swings unpredictably between aggression and care.

According to the DSM-5, the major characteristic of dissociative identity disorder is a disruption of identity, in which a person experiences two or more distinct personality states (or, in other cultures, experiences of so-called possession).

These states display marked differences in a person’s behaviour, recollections and opinions, and ways of engaging with the world and other people. The person frequently experiences gaps in memory or difficulties recalling events that occurred while they were in other personality states.

The manifestations of these symptoms are subtle and well concealed for most patients. However, overt symptoms tend to surface during times of stress, re-traumatisation or loss.

Media references to dissociative identity disorder, like the lead character in the movie Split, are often highly stigmatising.
Blinding Edge Pictures Blumhouse Productions Dentsu (in association with) Fuji Eight Company Ltd/IMDb

People with the condition typically have a number of other problems. These include depression, self-harm, anxiety, suicidal thoughts, and increased susceptibility to physical illness. They frequently have difficulties engaging in daily life, including employment and interactions with family.

This is, perhaps, unsurprising, given people with dissociative identity disorder have experienced more trauma than any other group of patients with psychiatric difficulties.

Dissociative identity disorder is a relatively common psychiatric disorder. Research in multiple countries has found it occurs in around 1% of the general population, and in up to one fifth of patients in inpatient and outpatient treatment programs.

Trauma and dissociation

The link between severe early trauma and dissociative identity has been controversial. Some clinicians have proposed dissociative identity disorder is the result of fantasy and suggestibility rather than abuse and trauma. But the causal relationship between trauma and dissociation (alterations of identity and memory) has been repeatedly shown in a range of studies using different methodologies across cultures.

People with dissociative identity disorder are generally unresponsive to (and may deteriorate under) standard treatment. This may include cognitive behavioural treatment, or exposure therapy for post-traumatic stress disorder.


Read more:


Phase-orientated treatment has been shown to improve dissociative identity disorder. This involves stages (or phases) of treatment, from an initial focus on safety and stabilisation, through to containment and processing of trauma memories and feelings, to the final phase of integration and rehabilitation. The goal of treatment is for the person to move towards better engaging in life without debilitating symptoms.

An international study that followed 280 patients with dissociative identity disorder (or a variant of it, which is a dissociative disorder not otherwise specified) and 292 therapists over time, found this approach was associated with improvements across a number of psychological and social functioning areas. Patients and therapists reported reduction in dissociation, general distress, depression, self-harm and suicidal thoughts.

Controversies and debates

Critics have pointed to poor therapeutic practice causing dissociative symptoms as well as false memories and false allegations of abuse. Some are particularly concerned therapists are focused on recovering memories, or encouraging patients to speculate that they have been abused.

However, a contemporary survey of clinical practice among specialists of dissociative identity found those treating the disorder weren’t focused on retrieving memories at any phase of the treatment.

A recent literature analysis concluded that criticisms of dissociative identity disorder treatment are based on inaccurate assumptions about clinical practice, misunderstandings of symptoms, and an over-reliance on anecdotes and unfounded claims.

Dissociative identity disorder treatment is frequently unavailable in the public health system. This means people with the condition remain at high risk of ongoing illness, disability and re-victimisation.

The underlying cause of the disorder, which is severe trauma, has been largely overlooked, with little discussion of the prevention or early identification of extreme abuse. Future research should not only address treatment outcomes, but also focus on public policy around prevention and detection of extreme trauma.


The ConversationIf this article has raised concerns for you or anyone you know, call Lifeline 13 11 14, Suicide Call Back Service 1300 659 467 or Kids Helpline 1800 55 1800.

Michael Salter, Senior Lecturer in Criminology, Western Sydney University; Adjunct Professor Warwick Middleton, Adjunct Professor, The University of Queensland, and Martin Dorahy, Professor of Clinical Psychology

This article was originally published on The Conversation. Read the original article.

Article by noted bioethicist Françoise Baylis

Genome editing of human embryos broadens ethics discussions

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Scientists are using a powerful gene editing technique to understand how human embryos develop.
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Françoise Baylis, Dalhousie University

For several years, scientists have experimented on human embryos with a powerful genome editing tool called CRISPR to see if they could correct genetic errors or reduce the risk of disease. In September, Kathy Niakan at the Francis Crick Institute in London and her colleagues reported they had used this tool on human embryos for a very different purpose — to better understand human development.

The use of CRISPR (pronounced “crisper”) to modify human embryos has prompted a healthy debate on the ethics of human genetic technologies. This tool is controversial, in part, because changes that are made to the embryo could be passed down to future generations. Niakan’s recent research is novel, and less ethically fraught than some other genome-editing research.

Research labs around the world are using CRISPR to selectively insert, delete or replace DNA with far greater precision and at a lower cost than other genome-editing techniques. Since 2015, five reports have detailed its use in human embryos to correct disease-causing mutations or create resistance to infectious disease.

Scientists have modified the genes responsible for β-thalassemia (an inherited blood disorder), favism (a reaction to eating fava beans), and a type of heart disease. Another experiment used CRISPR to introduce a mutation into a protein called CCR5 in an effort to prevent HIV infection.

A striking difference

The project led by Niakan had a starkly different aim. It used CRISPR to peek at the earliest stages of human embryonic development by targeting a gene called OCT4, which is active in the cells that go on to form the embryo.

Niakan’s immediate objective was to better understand the early aspects of human development. But her research eventually may help reveal why some pregnancies end in miscarriages and may improve the success of in vitro fertilization.

Much of the global discussion over the ethics of modifying human embryos has focused on whether the technique might be unsafe or used for non-medical purposes. Niakan’s recent project brings other aspects of this debate to light. How do scientists acquire the embryos they use in their research, and how are their projects approved?

So far, these types of experiments have been done in China, the United Kingdom and the United States. With only limited data available on the experiments conducted in China, it makes sense to focus the discussion on the experiments based in the United States and in the United Kingdom.

Who’s taking the risk – and why?

Earlier this year, Shoukhrat Mitalipov, a reproductive biologist at Oregon Health and Science University (OHSU), and his colleagues used CRISPR in human embryos to repair a mutation that causes heart disease. From an ethics standpoint, Mitalipov’s research is more controversial than Niakan’s. The goal of his experiments was to make changes to the human embryo that could be passed on to future generations. Niakan’s research, on the other hand, aimed to develop our understanding of human embryology.

To do the experiments, Mitalipov’s team had to create human embryos from donated eggs and sperm. In contrast, Niakan’s project used embryos that were left over from fertility treatments. This is an important difference.

For Mitalipov’s study, the women who donated their eggs for research were exposed to the risks associated with hormonal stimulation and egg retrieval. These risks include abdominal pain, vomiting, rapid weight gain, shortness of breath, and damage to the organs that are close to the ovaries. A particularly serious risk is ovarian hyperstimulation syndrome that can require hospitalization.

With Niakan’s study, women assumed these risks in connection with their IVF treatment, not their participation in research. These women weighed the potential harms of hormonal stimulation and egg retrieval against the potential benefits of having a child using assisted human reproduction. Embryos remaining after fertility treatment were donated to research.

Looking ahead

It’s also worth examining how these studies were approved. Several committees, panels and review boards from OHSU provided input and guidance prior to granting Mitalipov permission to do his experiments. OHSU is Mitalipov’s home institution. This raises the spectre of institutional conflict of interest because OHSU stands to benefit from Mitalipov’s research if his work attracts more research funding or enhances the university’s reputation.

In the United Kingdom, the governance and oversight of human embryo research lies in the hands of authorities that are legally regulated and are at arms length to the institutions conducting the research. Ethics review of human embryo research occurs at both the national and regional level. The Human Fertilisation and Embryology Authority and the regional research ethics committee reviewed Niakan’s proposal before she could begin her experiments.

The ConversationAs genome editing of human embryos becomes more widespread, it is important to understand the differences between one project and the next so that we can meaningfully discuss the range of ethical, social, political and regulatory issues associated with the research.

Françoise Baylis, Professor and Canada Research Chair in Bioethics and Philosophy, Dalhousie University

This article was originally published on The Conversation. Read the original article.

New discriminatory NHS policy is bad for your health, whoever you are

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Imran’s Photography/Shutterstock

Jessica Potter, Queen Mary University of London

When I first qualified as a doctor more than ten years ago, it was simple – my duty was to provide the best possible care to the patient in front of me. Evidence and clinical experience were my guides. Unlike in a commercialised health system, such as the US or India, I was not torn between doing the right thing and demands from a profit-making paymaster, or concerns over whether my patient could afford the care.

Identity checks at the front door and upfront charging have changed all that. They compromise my duty to “show respect for human life” by prioritising British lives over all others, regardless of the wider implications.

According to the NHS constitution, healthcare should be “available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status”. It is a service that provides care “based on need, not an individual’s ability to pay”. It is these first two fundamental principles that I, along with many other NHS staff, am so proud of.

For the first time since its inception, Jeremy Hunt has said “we should all expect to be asked questions that confirm our eligibility for free healthcare”. This statement came as part of the Migrant and Visitor Cost Recovery Programme, first rolled out in 2014. It sets in place a series of policies that restrict access to healthcare for those not born in the UK. The NHS cannot be available to all, as the constitution states. A line must be drawn somewhere, and that line is the UK border.

An immigration health surcharge has been one of the least controversial measures introduced, attached to the visa application process for long-term non-European Economic Area migrants and students.

However, the second part of the cost recovery programme has been to incentivise NHS trusts to identify ineligible patients and charge them 50% more than the actual cost of their care. Critics argue that the cost of managing this scheme does not justify the 0.3% dent in the annual NHS budget attributable to health tourism. Furthermore, there have been reports of patients wrongfully billed. This would be stressful in itself, but more concerning are the reports of racial profiling that has been used to aid the identification of chargeable patients. With the introduction of charges upfront in an NHS that is already running on empty, snap decisions on who will actually be asked to provide identification are likely to be based on identifiers of difference, such as skin colour or accent.

To add to this hostile environment for migrants, in February this year the assumption of confidentiality – a sacred cornerstone of medical practice and a foundation of the trust that is so vital to the doctor-patient relationship – was placed on shaky ground with an agreement that patient details could be passed on to the Home Office. This memorandum of understanding, along with a hotline which charged the NHS 80 pence per minute (just to add insult to injury), is aimed at identifying people for deportation.

A public health risk

Despite the Department of Health’s claim that evidence is lacking, there is a significant body of knowledge that demonstrates that charging and data-sharing deter people from seeking help when they are unwell. These barriers to obtaining health – which, by the way, the UK government has signed up to protect as part of the EU convention on human rights – extend way beyond those who, in the eyes of the law, are ineligible for care. From a public health perspective, delaying diagnosis and treatment of infectious diseases increases the risk of spread to the wider community. Bacteria, I assure you, pay no heed to arbitrary notions of birth rights and citizenship.

From an economic perspective, prevention is better than cure. Those deterred from accessing healthcare by these policies are the least able to pay. By the time their treatment is life-threatening, you can be sure that, had we treated them sooner, the outcome would be better and cheaper for all. It will be those who look different, sound different, or dress differently from an “average British citizen” (in the head of the person in front of them) who will be caught in the wider net of eligibility checks.

The ConversationThese policies do not protect human rights. They are not in line with my General Medical Council duties as a doctor or with NHS principles. They are not economically sound. They will not protect the health of the public. These policies feed a narrative that the NHS crisis has been caused by migrants – not the rich people who broke the banks and heralded in a period of austerity. We must look up and hold those people in power to account and look around at our fellow human beings with compassion and kindness.

Jessica Potter, MRC Doctoral Clinical Research Fellow, Queen Mary University of London

This article was originally published on The Conversation. Read the original article.

Pets and you

The science behind why some people love animals and others couldn’t care less

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xkunclova/Shutterstock.com

John Bradshaw, University of Bristol

The recent popularity of “designer” dogs, cats, micro-pigs and other pets may seem to suggest that pet keeping is no more than a fad. Indeed, it is often assumed that pets are a Western affectation, a weird relic of the working animals kept by communities of the past.

About half of the households in Britain alone include some kind of pet; roughly 10m of those are dogs while cats make up another 10m. Pets cost time and money, and nowadays bring little in the way of material benefits. But during the 2008 financial crisis, spending on pets remained almost unaffected, which suggests that for most owners pets are not a luxury but an integral and deeply loved part of the family.

Some people are into pets, however, while others simply aren’t interested. Why is this the case? It is highly probable that our desire for the company of animals actually goes back tens of thousands of years and has played an important part in our evolution. If so, then genetics might help explain why a love of animals is something some people just don’t get.

Micro pigs in skirts.
PanyaStudio / Shutterstock.com

The health question

In recent times, much attention has been devoted to the notion that keeping a dog (or possibly a cat) can benefit the owner’s health in multiple ways – reducing the risk of heart disease, combating loneliness, and alleviating depression and the symptoms of depression and dementia.

As I explore in my new book, there are two problems with these claims. First, there are a similar number of studies that suggest that pets have no or even a slight negative impact on health. Second, pet owners don’t live any longer than those who have never entertained the idea of having an animal about the house, which they should if the claims were true. And even if they were real, these supposed health benefits only apply to today’s stressed urbanites, not their hunter-gatherer ancestors, so they cannot be considered as the reason that we began keeping pets in the first place.

Illustration of a Japanese cat cemetery.
Penguin, Author provided

The urge to bring animals into our homes is so widespread that it’s tempting to think of it as a universal feature of human nature, but not all societies have a tradition of pet-keeping. Even in the West there are plenty of people who feel no particular affinity for animals, whether pets or no.

The pet-keeping habit often runs in families: this was once ascribed to children coming to imitate their parents’ lifestyles when they leave home, but recent research has suggested that it also has a genetic basis. Some people, whatever their upbringing, seem predisposed to seek out the company of animals, others less so.

So the genes that promote pet-keeping may be unique to humans, but they are not universal, suggesting that in the past some societies or individuals – but not all – thrived due to an instinctive rapport with animals.

Pet lovers of the future.
Conrado/Shutterstock.com

Pet DNA

The DNA of today’s domesticated animals reveals that each species separated from its wild counterpart between 15,000 and 5,000 years ago, in the late Palaeolithic and Neolithic periods. Yes, this was also when we started breeding livestock. But it is not easy to see how this could have been achieved if those first dogs, cats, cattle and pigs were treated as mere commodities.

If this were so, the technologies available would have been inadequate to prevent unwanted interbreeding of domestic and wild stock, which in the early stages would have had ready access to one another, endlessly diluting the genes for “tameness” and thus slowing further domestication to a crawl – or even reversing it. Also, periods of famine would also have encouraged the slaughter of the breeding stock, locally wiping out the “tame” genes entirely.

But if at least some of these early domestic animals had been treated as pets, physical containment within human habitations would have prevented wild males from having their way with domesticated females; special social status, as afforded to some extant hunter-gatherer pets, would have inhibited their consumption as food. Kept isolated in these ways, the new semi-domesticated animals would have been able to evolve away from their ancestors’ wild ways, and become the pliable beasts we know today.

The pug – a long way removed from its ancestors.
Penguin, Author provided

The very same genes which today predispose some people to take on their first cat or dog would have spread among those early farmers. Groups which included people with empathy for animals and an understanding of animal husbandry would have flourished at the expense of those without, who would have had to continue to rely on hunting to obtain meat. Why doesn’t everyone feel the same way? Probably because at some point in history the alternative strategies of stealing domestic animals or enslaving their human carers became viable.

There’s a final twist to this story: recent studies have shown that affection for pets goes hand-in-hand with concern for the natural world. It seems that people can be roughly divided into those that feel little affinity for animals or the environment, and those who are predisposed to delight in both, adopting pet-keeping as one of the few available outlets in today’s urbanised society.

The ConversationAs such, pets may help us to reconnect with the world of nature from which we evolved.

John Bradshaw, Visiting Fellow in Anthrozoology, University of Bristol

This article was originally published on The Conversation. Read the original article.

The science behind… coffee!

Brewing a great cup of coffee depends on chemistry and physics

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What can you do to ensure a more perfect brew?
Chris Hendon, CC BY-ND

Christopher H. Hendon, University of Oregon

Coffee is unique among artisanal beverages in that the brewer plays a significant role in its quality at the point of consumption. In contrast, drinkers buy draft beer and wine as finished products; their only consumer-controlled variable is the temperature at which you drink them.

Why is it that coffee produced by a barista at a cafe always tastes different than the same beans brewed at home?

It may be down to their years of training, but more likely it’s their ability to harness the principles of chemistry and physics. I am a materials chemist by day, and many of the physical considerations I apply to other solids apply here. The variables of temperature, water chemistry, particle size distribution, ratio of water to coffee, time and, perhaps most importantly, the quality of the green coffee all play crucial roles in producing a tasty cup. It’s how we control these variables that allows for that cup to be reproducible.

How strong a cup of joe?

Besides the psychological and environmental contributions to why a barista-prepared cup of coffee tastes so good in the cafe, we need to consider the brew method itself.

Science helps optimize the coffee.
Chris Hendon, CC BY-ND

We humans seem to like drinks that contain coffee constituents (organic acids, Maillard products, esters and heterocycles, to name a few) at 1.2 to 1.5 percent by mass (as in filter coffee), and also favor drinks containing 8 to 10 percent by mass (as in espresso). Concentrations outside of these ranges are challenging to execute. There are a limited number of technologies that achieve 8 to 10 percent concentrations, the espresso machine being the most familiar.

There are many ways, though, to achieve a drink containing 1.2 to 1.5 percent coffee. A pour-over, Turkish, Arabic, Aeropress, French press, siphon or batch brew (that is, regular drip) apparatus – each produces coffee that tastes good around these concentrations. These brew methods also boast an advantage over their espresso counterpart: They are cheap. An espresso machine can produce a beverage of this concentration: the Americano, which is just an espresso shot diluted with water to the concentration of filter coffee.

All of these methods result in roughly the same amount of coffee in the cup. So why can they taste so different?

When coffee meets water

There are two families of brewing device within the low-concentration methods – those that fully immerse the coffee in the brew water and those that flow the water through the coffee bed.

From a physical perspective, the major difference is that the temperature of the coffee particulates is higher in the full immersion system. The slowest part of coffee extraction is not the rate at which compounds dissolve from the particulate surface. Rather, it’s the speed at which coffee flavor moves through the solid particle to the water-coffee interface, and this speed is increased with temperature.

The Coffee Taster’s Flavor Wheel provides a way to name various tastes within the beverage.
Specialty Coffee Association of America, CC BY-NC-ND

A higher particulate temperature means that more of the tasty compounds trapped within the coffee particulates will be extracted. But higher temperature also lets more of the unwanted compounds dissolve in the water, too. The Specialty Coffee Association presents a flavor wheel to help us talk about these flavors – from green/vegetative or papery/musty through to brown sugar or dried fruit.

Pour-overs and other flow-through systems are more complex. Unlike full immersion methods where time is controlled, flow-through brew times depend on the grind size since the grounds control the flow rate.

The water-to-coffee ratio matters, too, in the brew time. Simply grinding more fine to increase extraction invariably changes the brew time, as the water seeps more slowly through finer grounds. One can increase the water-to-coffee ratio by using less coffee, but as the mass of coffee is reduced, the brew time also decreases. Optimization of filter coffee brewing is hence multidimensional and more tricky than full immersion methods.

What do they know that we don’t?
Redd Angelo on Unsplash, CC BY

Other variables to try to control

Even if you can optimize your brew method and apparatus to precisely mimic your favorite barista, there is still a near-certain chance that your home brew will taste different from the cafe’s. There are three subtleties that have tremendous impact on the coffee quality: water chemistry, particle size distribution produced by the grinder and coffee freshness.

First, water chemistry: Given coffee is an acidic beverage, the acidity of your brew water can have a big effect. Brew water containing low levels of both calcium ions and bicarbonate (HCO₃⁻) – that is, soft water – will result in a highly acidic cup, sometimes described as sour. Brew water containing high levels of HCO₃⁻ – typically, hard water – will produce a chalky cup, as the bicarbonate has neutralized most of the flavorsome acids in the coffee.

Ideally we want to brew coffee with water containing chemistry somewhere in the middle. But there’s a good chance you don’t know the bicarbonate concentration in your own tap water, and a small change makes a big difference. To taste the impact, try brewing coffee with Evian – one of the highest bicarbonate concentration bottled waters, at 360 mg/L.

The particle size distribution your grinder produces is critical, too.

Every coffee enthusiast will rightly tell you that blade grinders are disfavored because they produce a seemingly random particle size distribution; there can be both powder and essentially whole coffee beans coexisting. The alternative, a burr grinder, features two pieces of metal with teeth that cut the coffee into progressively smaller pieces. They allow ground particulates through an aperture only once they are small enough.

Looking for a more even grind.
Aaron Itzerott on Unsplash, CC BY

There is contention over how to optimize grind settings when using a burr grinder, though. One school of thought supports grinding the coffee as fine as possible to maximize the surface area, which lets you extract the most delicious flavors in higher concentrations. The rival school advocates grinding as coarse as possible to minimize the production of fine particles that impart negative flavors. Perhaps the most useful advice here is to determine what you like best based on your taste preference.

Finally, the freshness of the coffee itself is crucial. Roasted coffee contains a significant amount of CO₂ and other volatiles trapped within the solid coffee matrix: Over time these gaseous organic molecules will escape the bean. Fewer volatiles means a less flavorful cup of coffee. Most cafes will not serve coffee more than four weeks out from the roast date, emphasizing the importance of using freshly roasted beans.

One can mitigate the rate of staling by cooling the coffee (as described by the Arrhenius equation). While you shouldn’t chill your coffee in an open vessel (unless you want fish finger brews), storing coffee in an airtight container in the freezer will significantly prolong freshness.

The ConversationSo don’t feel bad that your carefully brewed cup of coffee at home never stacks up to what you buy at the café. There are a lot of variables – scientific and otherwise – that must be wrangled to produce a single superlative cup. Take comfort that most of these variables are not optimized by some mathematical algorithm, but rather by somebody’s tongue. What’s most important is that your coffee tastes good to you… brew after brew.

Christopher H. Hendon, Assistant Professor of Computational Materials and Chemistry, University of Oregon

This article was originally published on The Conversation. Read the original article.

What you look like matters – but should it?

What our faces can tell other people about the state of our health

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Glowing with health.
Shutterstock/Luba V Nel

Alex Jones, Swansea University

Our facial appearance influences how we feel about ourselves – and other people’s faces influence who we choose to approach or avoid and who we’d like to form romantic relationships with. At a glance, a face reveals a wealth of information about how we are feeling, or the kinds of behaviours we might be about to engage in – but what does it say about us when we aren’t expressing emotion? As it turns out, it’s more than you could imagine.

Over the past few years I’ve learned how aspects of our personality are present in our faces, how symptoms of depression cause faces to appear less socially desirable, and how wearing make-up changes perceptions of social traits – but the most important signals that our faces can give are of health.

The face is a biological billboard and we are expert readers, always interested in what it has to say. We are attracted to healthy-looking faces and avoid those who are unhealthy –- think of the sensation you might have had the last time you were on the train or a bus near someone who looked unwell – but it is the question of what makes a face look “healthy” in our eyes that is the most intriguing.

There are many historical examples of people altering their facial appearance to appear healthier. Things like the influence of body mass index (BMI) on face shape, or the smoothness of skin texture play a role in how healthy we are viewed to be, but it is actually facial colouration that seems to be the most important.

The lighter areas show where the skin of healthier looking faces are brighter (left), redder (middle), and yellower (right).

Early research has identified that faces with lighter, redder, and yellower skin were seen as the healthiest – and this was consistent across all ethnicities. There also seemed to be relevant biological processes associated with these colours: for example, lighter skin is associated with the ability to absorb more vitamin D. Greater redness, particularly when from oxygenated blood, may indicate more efficient circulation and blood supply to the skin.

But it is yellowness that seems to be particularly relevant for health, and for good reason: people with yellower skin tend to have healthier diets, rich in fruit and vegetables. The organic pigments in these foods, known as carotenoids, are hugely beneficial for health, and seem to be responsible for producing that desirable healthy glow. Intriguingly, tanning also increases skin yellowness and makes faces appear healthier, but the yellowness conferred by carotenoids (as a result, perhaps, of a healthy diet) is preferred to the yellowness brought about by tanning.

Healthy glow

The secret to a healthy appearance isn’t as simple as eating more fruit and vegetables, however, it’s a bit more complicated than that – and healthy face colouration may be more nuanced than previously thought. Skin conditions such as dark circles under the eyes or rosacea, a condition which causes the skin to flush and redden, cause great concern to sufferers – Google searches of treatments or remedies return millions of hits. Both these conditions are also localised to areas of the face, which suggests colours in certain areas of faces could be relevant for looking healthy. Might these patterns of colour in faces, rather than the colour of the entirety of facial skin, be more relevant for looking healthy?

To answer this questions, we asked observers to rate faces for how healthy they thought they were, and calculated the colour differences between faces seen as very healthy and very unhealthy. We used Caucasian faces for the comparison, but there is some evidence that suggests how the overall skin colours of yellowness, redness, and lightness are seen as healthy in non-Caucasian faces too: it seems that everyone, regardless of race, finds these tones to be healthy.

Our research found that while yellowness across the whole face was a contributor to looking healthy, confirming earlier findings, lighter skin under the eyes and redder skin on the cheeks seemed to play larger roles. That colouration, in those areas, seemed to account for a lot more variation in health ratings than skin yellowness.

We subtly changed photographed faces to have lighter under-eye skin and redder cheeks – and also the reverse effect: darker under-eye skin and greener cheeks. Asking people to pick which they found the healthiest revealed a strong preference for the former pattern.

One a picture of health, the other, not so much – which do you think looks healthier?

Interestingly, when we reversed the location of the colouration – lighter cheeks and redder under-eyes or darker cheeks and greener under-eyes – there was no clear preference. Given the wealth of research showing lighter skin and redder skin across the whole face is perceived as healthier this result was surprising. What this work suggests is that lightness and redness in our facial skin is seen as healthy, but only when it is under the eyes or in the cheeks, respectively.

Red cheeks are healthy, red eyes not – do you think one looks healthier than the other?

In a final study, I looked at which facial area and colour was seen as the healthiest. While having redder cheeks and light skin under the eyes came out as looking equally healthy, dark skin under the eyes made people think the faces looked quite unhealthy, even more so than sickly-looking greener cheeks.

The ConversationIt is no surprise that cosmetic products such as concealer and blusher are so popular, since they increase a healthy looking colouration in the areas that matter the most to health perception – but nothing could ever beat a good night’s sleep and regular exercise.

Alex Jones, Lecturer, Swansea University

This article was originally published on The Conversation. Read the original article.

Why we have a problem with narcissism

When you search the internet on narcissistic personality disorder, you will run into lots of angry comments from people who have been hurt (“burned”) by one or more persons with the disorder. These persons are often charming and anything but boring. That is far from the only reason why persons can end up with narcissists in their lives, however, and no one is to blame for ending up in such a situation.

After a while, it becomes obvious that there is another side to persons who have the disorder. And that is when the problems start.

Because the rest of us, we want to change these persons. We want them to “behave”. We want them to learn. And that is simply not possible. Many also want justification for some of the less  nice things they do (and probably aren’t able to find it).

It’s worse than accusing a person who grew up in Japan of being guilty of speaking Japanese and wanting them to speak English instantly because a person who speaks Japanese can start learning English. But a narcissist can’t do that (although some narcissists are able to benefit from therapy).

Essentially, what we do is like blaming the colour red for being red, the sea for being the sea, a cloud for being a cloud, or blaming a heap of rocks for being a heap of rocks, or bricks.

Again, I am not trying to put the blame on people, merely trying to show the futility of wanting to change a narcissist.

The heap of bricks usually gets angry and/or confused, feels hurt and starts throwing bricks.

He or she is a perfect heap of bricks but we want them to be neat, well-organized stacks of bricks. It is just not what they are.

By the way, I am not trying to suggest that a stack of bricks is better than a heap of bricks or the other way around.

One is not better than the other. Both exist. That’s the way it is.

In many cases, something went wrong for the person with narcissistic personality disorder in early childhood when his or her personality was being formed. If you see a normal personality as a well-organized stack of bricks, well, then maybe someone pulled one of the lower bricks out of the stack, resulting in a perfect heap of bricks. (That can be called trauma in psychology, or injury, which can be confusing.)

Some people who got hurt by a narcissist may get angry when they read what I wrote above, and I think I understand that. To them it may feel as if I am saying that it is okay that they got hurt. Or that I am somehow “justifying” what narcissists do and are. (They may also think that I have never lost anything in my life and aren’t familiar with the havoc narcissists can wreak.)

That is not at all what I am trying to say, or do.

You cannot change a narcissist.

That is where a lot of the problems come from, us wanting to fix them, heal them, make them whole, change them, correct them, make them more like us, make them behave better, make them see the truth, make them grow up, be more mature, less this, more that and so on.

But – generally speaking -you can only avoid the clashes – or make them less severe – if a) you have some understanding of what narcissistic personality disorder is like and b) if you are able to recognize the disorder in someone else early enough. The latter is very hard, in my experience.

I used to think that narcissists are people who spend a lot of time in front of the mirror. I based that on some Greek mythology I was taught about in high school. Clearly, I was clueless.

In the course of my life, I have come across a few persons with the disorder without having an idea of what was going on. Sometimes, it was perfectly fine. At other times, the situation was much more complicated.

I think I’ve just recognized another one in my geographical vicinity. Hopefully, this means that from now on, I’ll be able to avoid clashes with that person. In hindsight, I’ve been really stupid in my dealings with that person so far, in fact. In hindsight, why didn’t I see it? In hindsight, it is so blatantly obvious! In hindsight, it also taught me a tough lesson about myself. To others, my “helpfulness” can be an arrogant declaration of their incapability (and that can trigger a lot of anger in some people, which may not be visible on the surface but can turn into contempt and viciousness, which maybe isn’t so surprising if you think about it a bit more).

Will I be able to spot this disorder right away in the future? Doubtful! But I will probably recognize it much sooner from now on. So that I can avoid the clashes, spot the games before I get drawn into them, and for instance won’t even begin to give them helpful suggestions when they complain about this or that because that only enrages them as it suggests to them they aren’t perfect.

Reading up on the disorder is not pleasant, for instance because it almost unavoidably makes you wonder if you might have the disorder yourself. And if you’ve had someone with the disorder in your life, chances are that you have adopted some of the person’s behaviour and emotions. Fortunately, that does not make you a narcissist.

But please, stop trying to change narcissists. It’s impossible.

And don’t blame them. They did not choose to be this way. That is not a “justification”. That is  saying things the way they are. A daffodil is a daffodil, a rose a rose and a tulip a tulip. It’s as simple as that. There is no justification, and no blame, for a tulip being a tulip. A tulip is just the way a tulip is.

PS
I suspect that as long as you keep showering a narcissist with positive feedback, things go much better. If you’re a well-balanced person, showering someone else with praise to keep them happy and balanced too does not have to be the end of the world. Is this easy to say? Yes. Is this easy to do? No! But it gets progressively easier.

For me personally, some “problems” started after I read a lot of very negative posts and comments from those who have been burned by narcissists because it led to accusations from me, and some fear. It can be very unsettling to read about how “evil” some people are supposed to be when you have them in your life and have been getting along with them okay. It can make you doubt yourself. The word “evil” is probably used much too quickly in this context. That doesn’t mean that the word never applies. Narcissists can become dangerous, says a clinical psychologist in Australia (see my previous posts), if they experience great internal turmoil as a result of external triggers. Yet another reason to try and understand the disorder better.

 

 

However, “working with a narcissist can also be extremely rewarding and inspiring”

See also this post.

When you start reading up on narcissistic personality disorder, you may find yourself wondering if you have it yourself, which can be unsettling at first. But after those first moments of concern, you will probably very quickly be able to decide that no, it isn’t the case.

You can also start to feel that it is wrong of you, that you are making a mistake or are weak or gullible if you are actually trying to find out how you can get along with a narcissist, for which it is necessary – or at least very helpful – to understand the disorder. (After all, the golden rule is “No contact”, which applies to people who are trying to break out of a close relationship.)

However, working with a narcissist can also be extremely rewarding and inspiring because of their nearly superhuman skills for getting things done — when they want it and how they want it.

From an article in Entrepreneur: https://www.entrepreneur.com/article/241355

Narcissists are part of society so you will run into them.

  • One could become that neighbor from hell who seemed so nice when he or she moved in if you don’t recognize the manipulative disorder hence don’t know how to deal with it.
  • One can turn up as your new boss or a new colleague at the desk next to yours.
  • If you’re self-employed, that strange client with inflated ideas about the importance of his work who suggests that if it becomes known you are working for him, burglary is likely and who suddenly starts calling you names for no reason at all may be one too. A little bit of extra knowledge may enable you to avoid the energy-draining conflict situations narcissists are famous for. That benefits everyone in the situation.

When you look into narcissistic personality disorder (or similar disorders), you may end up developing much greater insight into yourself. What your weaknesses are, which are usually strengths at the same time. You may discover a few highly surprising ones. That can cause you to stand much firmer.

You also have to decide for yourself what you need in life, what you want or like, what you are willing to accept (put up with) and where you absolutely put your foot down and draw the line if you want to be able to get along well with narcissists.

Narcissistic personality disorder explained – very good!

The “very good” refers to the videos below.

I talked about this disorder in relation to Donald Trump, before. Please, do remember that persons with narcissistic personality disorder DID NOT CHOOSE to have this disorder. In most cases, something happened in early childhood while the person’s personality was being formed. (There is a video below about that.)

It’s my interest in bioethics in combination with a zen tinge of acceptance, among other things (including two personal situations), that is causing me to look deeper into particularly these personality disorders.

Bioethicist Julian Savulescu, for instance, advocates for removing essentially all disorders and diseases from the human gene pool, even when we can do a lot to prevent certain conditions or keep them under control (think asthma and air quality). A lot of what he wants is like demolishing homes to prevent that they ever burn down. He also is highly critical with regard to various personality disorders.

If you are able to be compassionate and keep in mind that the line between compassion and stupidity is very thin, you may find that dealing with a narcissist becomes much easier. Also, not everyone with narcissistic personality disorder has the affliction to the same degree or in the same way.

It is, for instance, possible to be friends with someone with narcissistic personality disorder. You have to be very steady on your feet and recognize every instance you’re being played so that you can stop each manipulative game before it starts (such as being told that you’re wrong, that red is black and then when you agree it’s black, being told it’s red).

Recognize the toddler part in narcissists when they behave like toddlers. Respond the way you would respond to a toddler. (Calmly.)

You also have to be aware of what may be happening behind your back (lies that are being told about you) and realize that if you try to talk to third parties about the disorder or about what is going on, YOU will sound like the “crazy” and “jealous” one. Can you handle that?

I am not recommending that we all become friends with narcissists, but they are a part of human diversity so we run into them whether we like it or not. Being able to deal with them well is better for everyone.

You can often choose how you respond emotionally to all sorts of occurrences and being able to choose how you respond can make a great difference. Often, you can either choose to get upset and feel victimized or shrug, smile and calmly carry on with whatever you were doing (or walk away). Understanding more about narcissistic personality disorder can facilitate this ability to choose your own responses.

The upside? Narcissists may all have a great sense of humor and no one can ever accuse them of being boring. Sometimes, you can actually learn from them, or from having encountered them.

The downside? They may have ruined you (your life) completely before you even know what hit you. Taking the zen approach of mentally letting go of what you lost and acceptance can help you deal with it and enable you to stay “whole” (but that is hard to explain without sounding shallow or even flippant or, worse, as an encouragement for accepting abuse).

Video 1: How to understand people who irritate or upset you

Video 2: Understanding the mind of a narcissist

Video 3: The emotion at the heart of narcissism

Video 4: The childhood origins of narcissism

Video 5: 5 key strategies for dealing with narcissists

Video 6: How the narcissist destroys your physical health

Video 7: 5 destructive fantasies empaths have after the narcissist has left.
(This is a video about lingering beliefs or ideas some people have after the breakup of a relationship with a narcissist.)

Video 8: The hidden emotion that makes empaths vulnerable to narcissists

Video 9: 7 traits of Narcissistic Abuse Victim Syndrome

Also, this happens when you ignore a narcissist, apparently:

Knowing how manipulation works is helpful too.

Below is an example of a behavior that narcissistic personality disorder can also result in, apparently. (Notice that no one seems to have realized yet that hackers can also have narcissistic personality disorder.) I am not sure yet how that comes about. Perhaps from the realization that in real life, relationships are too hard for someone with such a personality disorder?

I post the following from the work of Dr Lorraine Sheridan.

Typology 4: Sadistic stalking (12.9%)

Characteristics

· victim is an obsessive target of the offender, and who’s life is seen as quarry and prey (incremental orientation)
· victim selection criteria is primarily rooted in the victim being:

(i) someone worthy of spoiling, i.e. someone who is perceived by the stalker at the commencement as being: – happy – ‘good’ – stable – content and
(ii) lacking in the victim’s perception any just rationale as to why she was targeted

· initial low level acquaintance

· apparently benign initially but unlike infatuation harassment the means of intervention tend to have negative orientation designed to disconcert, unnerve, and ergo take power away from the victim

– notes left in victim’s locked car in order to unsettle target (cf. billet-doux of infatuated harassment)
– subtle evidence being left of having been in contact with the victim’s personal items e.g. rifled underwear drawer, re-ordering/removal of private papers, cigarette ends left in ash trays, toilet having been used etc.
– ‘helping’ mend victims car that stalker had previously disabled · thereafter progressive escalation of control over all aspects (i.e. social, historical, professional, financial, physical) of the victim’s life

· offender gratification is rooted in the desire to extract evidence of the victim’s powerlessness with inverse implications for his power => sadism
· additional implication => self-perpetuating in desire to hone down relentlessly on individual victim(s)
· emotional coldness, deliberateness and psychopathy (cf. the heated nature of ex-partner harassment)
· tended to have a history of stalking behaviour and the controlling of others · stalker tended to broaden out targets to family and friends in a bid to isolate the victim and further enhance his control
· communications tended to be a blend of loving and threatening (not hate) designed to de-stabilise and confuse the victim
· threats were either overt (“We’re going to die together”) or subtle (delivery of dead roses)
· stalker could be highly dangerous

– in particular with psychological violence geared to the controlling of the victim with fear, loss of privacy and the curtailment of her social world

· physical violence was also entirely possible

– especially by means which undermine the victim’s confidence in matters normally taken for granted e.g. disabling brake cables, disarming safety equipment, cutting power off

· sexual content of communications was aimed primarily to intimidate through the victim’s humiliation, disgust and general undermining of self-esteem
· the older the offender, the more likely he would have enacted sadistic stalking before and would not be likely to offend after 40 years of age if not engaged in such stalking before
· victim was likely to be re-visited after a seeming hiatus

Case management implications

· should be taken very seriously
· acknowledge from outset that the stalker activity will be very difficult to eradicate
· acknowledge that there is no point whatsoever in appealing to the offender – indeed will exacerbate the problem
· never believe any assurances, alternative versions of events etc. which are given by the offender
· however, record them for use in legal action later
· the victim should be given as much understanding and support as can be made available
· the victim should not be given false or unrealistic assurance or guarantees that s/he will be protected
· the victim should carefully consider relocation. Geographical emphasis being less on distance per se, and more on where the offender is least able to find the victim
· the police should have in mind that the sadistic stalker will be likely to:

(i) carefully construct and calculate their activity to simultaneously minimise the risk of intervention by authorities while retaining maximum impact on victim,
(ii) be almost impervious to intervention since the overcoming of obstacles provides
(iii) new and potent means of demonstrating the victim’s powerlessness (ergo self-perpetuating) and,
(iiii) if jailed will continue both personally and vicariously with the use of a network.

http://www.le.ac.uk/press/ebulletin/archive/speaker_sheridan.html

http://www.le.ac.uk/ebulletin-archive/ebulletin/features/2000-2009/2007/07/nparticle.2007-07-17.html

http://news.bbc.co.uk/1/hi/uk/6300291.stm

http://www.le.ac.uk/press/stalkingsurvey.htm

The snow birds

Once upon a time, I had two Canadian snow birds as neighbors. And every morning, they pinched my newspaper! That meant I usually didn’t get to see it until after I returned home from the lab where I was working on my PhD.

Snow birds are people who make the trek to a warmer climate to escape from the snow in their usual environment. They’re often retired. These particular snow birds were two elderly sisters whose husbands had passed away and who had decided to spend some time in Florida.

Then something happened.

One of the sisters changed her ticket and returned to Canada earlier than planned. It turned out that the other sister was in the early stages of Alzheimer’s disease, and it was suddenly progressing. She had been randomly accusing people – including her sister – of theft and other unkind deeds and it simply got to be too much for the other sister, understandably.

When people have Alzheimer’s and can’t remember where they’ve left things, and what day it is, it is not that surprising that they think someone has stolen something from them when they can’t find what they are looking for – because it’s in another place or in another time period.

So, the landlord we had in common (Paul, a guy I knew from another setting) and I started looking after the lady. I discovered that merely keeping track of the days for her was greatly reassuring to her, but also how draining it can be to look after someone with Alzheimer’s. It requires your complete attention, and a lot of patience. It is not something you can do “on the side”, while doing something else at the same time. It requires dedication.

The landlord got in touch with the airline and arranged that the ticket date got changed and that someone would ensure that the woman in question wouldn’t return to Nova Scotia, where she used to live, but travel to the city in which she was now living. It got critical at some point when the airline asked whether the woman was actually able to travel on her own.

And I called the woman’s daughter, to keep her up to date and liaise with her too.

The woman – let’s call her Peggy – was actually a wonderful person who used to be very happy and who was also quite aware of what happening to her, which saddened me. Looking after her wasn’t nowhere as bad as I may have made it sound above. She was often lucid, and helping her keep track of time actually also seemed to help her stay lucid, because it eased the stress on her.

There was a second critical moment, though, when she arranged to have money wired from her account in Canada to a local bank. I informed one of the professors that I was going with her to the bank, and why. Just in case. And at the bank I kept my distance from the counter, on purpose.

But everything went fine.

For some reason, Peggy trusted me, even though I was in fact a complete stranger. Not even once, not even for a second, did she become  suspicious or distrustful about me in the days I looked after her, and I was very grateful for that.

It all happened decades ago on another continent, and I am sure she has passed away by now, so I don’t feel I am violating her privacy by posting the photos Paul took of the two of us at the airport. Yep, we’d gotten coffee. I am holding the coffee in that image on the left.

I was reminded of it this afternoon when I got a phone call related to another woman who needs to have a practical problem solved. That’s what Alzheimer’s is like in the beginning. A practical problem that others can help with.

Last week, I went shopping with an elderly woman in an electric wheelchair. I had spotted her in front of a busy shop with narrow aisles, clearly debating whether to go in or not, as the shop would close within 45 minutes. I offered to go into the shop with her and she accepted. I checked and cleared aisles, scouted products for her.

Heck, why not? I wasn’t going anywhere at the time and it didn’t even interrupt anything at all. (It’s important to give the other person enough space in such a situation, and I think I did that sufficiently too.) No, it wasn’t something I’ve done before. It was a spur-of-the-moment heck-why-not thing. A here-is-a-practical-problem-I-can-help-with-right-now thing.

 

Tasering of patients

Dutch daily Trouw prominently featured anger about a human rights violation on its 6 September front page (online version).

Not only had Dutch police tasered a patient in so-called drive-stun mode (“pain compliance“), the patient in question already was in solitary confinement.

I was shocked when I read this. It seems to signal a return to practices I thought we had left behind a long time ago, and it particularly worries me that this happened in the Netherlands of all places.

“This is torture,” say Amnesty International as well as organizations of patients and their relatives, and Amnesty has called for an immediate suspension of the use of this type of weapon by Dutch police, so I understand. According to Trouw, the taser’s manufacturer advises against use on psychiatric patients and Amnesty believes taser use may actually be life-threatening in such cases.

This is likely the first time a taser was used to subdue a hospitalized psychiatric patient in the Netherlands, where three-hundred police officers are currently testing tasers.

The following appears to have transpired.

On 17 July, police officers were called to a hospital in Cappelle aan de IJssel, in which a male patient in his twenties was having a psychotic episode. (When Dutch police are called to a hospital for a problem with a patient, police take over responsibility.)

The patient was having a bad day, apparently, and had refused to take his antipsychotic medicines. Rotterdam police were first called to force the patient into solitary confinement (to reduce sensory input and calm the patient down).

In the evening, police were called again, for unknown reasons. That’s when the tasering occurred.

The patient’s mother, Marijke Bos, found out about the incident a few days later during a visit on her son’s birthday. Her son had dark bruises under his eyes, several bruises on one of his hips and roughly thirty small taser-related lesions on his back. The patient had also been tasered on one of his feet.

The patient’s mother has filed several formal complaints.

The hospital staff reportedly is also extremely dismayed about the taser use.

Solitary confinement in itself can be damaging and can be seen as a human rights violation. Tasering a patient who already is in solitary confinement and clearly no danger to anyone else raises eyebrows, to put it mildly.

It seems to me that tasering in drive-stun mode is even worse than using a baseball bat to knock someone out as it deliberately causes pain, so it is more comparable to stabbing someone with a knife or throwing scalding water or oil.

The incident made me wonder about taser use on patients in other countries and I did a quick web search. It is not clear whether other reports of taser use on patients concern drive-stun mode or probe mode, but probe mode is the usual taser mode.

New Zealand police used a taser on a mentally ill man earlier this year as well and it was the country’s second case this year in which taser use against a mentally ill person was ruled (excessive and) unjustified:

“Police told the 21-year-old he would need to be strip searched, the man repeatedly refused to remove his clothes telling the officers he had a history of sexual abuse and didn’t feel comfortable being touched by males.”

In Britain, even taser use in general has turned out to concern mainly mentally ill persons, according to Home Office figures:

Taser use against patients in hospitals has already around in Britain for more than ten years:

The consensus appears to be that this is a big no-no:

I agree with Matilda MacAttram (director of Black Mental Health UK and writer of the above article in the Guardian) that there is no role for police in mental healthcare, just like police have no business in heart surgeries and appendectomies either.

See also this article:

Big algal bloom off southern English coast?

An unusually hot day yesterday and, I think, this was the first time in a long time that we’ve had hot weather on a bank holiday weekend. So lots of people made the trip to the coast.

This photo is from a different year, looking east from Southsea (Portsmouth).

Yesterday evening, a “chemical haze” suddenly rolled in from the sea in southeastern England. People’s eyes and throats were irritated by it and some people are reported to have vomited (but I wonder if that was actually caused by whatever was in the air).

Whatever it is, it is present in Portsmouth as well. During the day, I had noticed that my throat was achy, for no reason that I could identify. In the afternoon/evening, I first smelled something that I quickly recognized as barbecue fumes and later I smelled something else that I couldn’t identify and shrugged off. Maybe someone did something weird with a barbecue.

Then I saw a tweet… After I read about a chlorine-like chemical haze, I wondered if I was merely imagining smelling something. Seems easy enough to do. I later went to the window, saw that the windows were wet on the outside so some cold air (mist) had definitely rolled in, and what I smelled was like the smell of seaweed that I smell when I hang out on the shore.

Anyway, chlorine seemed very unlikely to me and I started thinking ozone build-up. But it seemed too massive for that (and would likely have required a reversal of wind direction during the day).

What I ended up wondering is: Could it have been DMS from a massive algal bloom? (“gas production during the senescence phase is 7–26 times higher than during the growth phase”) And next: Could it have come from E hux? (And, could it be related to global warming, maybe? It’s likely to soon for it to be related to Harvey somehow.)

If that is the case, then surely active marine scientists have already contacted the authorities with their speculations.

As usual, the British authorities were saying little more than to close windows and not to worry.

Also, wouldn’t the substance spike have shown up in one of the automatic air quality monitoring stations?

Likewise, if the haze was due to some kind of industrial event in France, then surely the authorities would have already found that out. (There is a windfarm construction project off Brighton, but it seems very very very unlikely to me that that has anything to do with it, lol.)

Some people must still be very busy studying satellite images of the English Channel right now.

An E hux bloom should show up in those easily enough, but such an observation would then have to be linked to “ground truth”. If it’s some other kind of bloom, it might be more difficult to detect.

If there is a bloom, wouldn’t one of the ferries have noticed something? If not, then a bloom could be further out.

They’re working on it: https://www.sussex.police.uk/news/hundreds-affected-as-gas-cloud-hits-sussex-coast/

I am highly intrigued!

A phytoplankton bloom in the English Channel as seen by SeaWiFS (2002) (The light area near the Thames, that is sediment, however.)

 

Will future parents need a license?

I ran into a discussion on Kialo, to which I quickly contributed the first paragraph below and penned what I have added below, all within about five minutes. I later edited it a bit, to make it easier to read.

I am so pleased someone started this discussion. I promote non-discrimination of embryos and fetuses. A child is not a consumer product but a human being who must be loved and encouraged to flourish. How can you love one child but not another if the latter is non-mainstream? I’ve been thinking about that and it’s made me wonder if it actually means that the parents aren’t fit to be parents. I haven’t dared say that out loud yet, but this discussion clears the road for me.

So yes, maybe parents-to-be should require vetting.

Within a few decades, we will no longer require sex to create babies, but will make our offspring in the lab, possibly on the basis of skin cells from each of the parents. We’ll probably look after our little gestating (incubating) children as if they are rare orchids that we want to bring to bloom.

(So by that time, women will no longer have a need for abortions and they won’t have to menstruate and experience PMS any longer either.)

I can imagine very well that you will require a license in the future in order to have a child. Somehow, that feels like an automatic consequence of the possibilities we will have then.

And also, indeed, why should adoptive parents be scrutinized but are natural parents free to do whatever they want?

And after all, in that distant future, anyone who wants can probably have a child (technically speaking). Even adoption may slowly become a thing of the past, that is, if we get to the point that we no longer succumb to illnesses and accidents and maybe even can choose when our lives end.

I hasten to add that at the moment, natural parents are not always free to do as they please either, of course. For example, in countries with a great deal of inequality, the state may step in on the basis of what is no more than prejudice in practice.

Nowadays, some children suffer horribly, either because of their parents or because of someone else. Sometimes before children are removed from their parents and sometimes afterward.

In practice, perhaps it won’t be an actual license but a training program that must be completed with good results. If that training is tough and long enough, that alone will already sort committed parents from parents who aren’t ready for a child.

Would they have to get a license or go through some kind of training program every time they want to have a child? Yes, I think so. Insights change.

It’s even possible that parenting will eventually become a profession.

PS
Unfortunately, Kialo may not work very well with Linux. I was able to post my contribution, but seem unable to comment on other people’s contributions. Maybe it’s part of the learning curve, but I did see the intro video and the comment option mentioned in it simply does not seem to exist for me.

Effects of gene editing: you decide

Techniques like gene editing may bring more equality, but can just as easily bring less. Now is the time to make up our minds about the future because we can’t leave this up to a handful of experts who advise the government.

Most of you will have heard about the recent CRISPR-Cas9 breakthrough. On 26 July, scientists in Oregon successfully used the technique to replace a defective piece of DNA with a regular piece of DNA. It concerned a gene with faulty DNA that normally results in heart disease.

This was only one small step, involving fertilized egg cells that were allowed to develop for no more than a few days and weren’t implanted in a womb.

But when techniques like CRISPR become routine, which “defects” are we going to edit out and which ones will we leave intact? And will this be the domain of commercial enterprises who sell their services or should this be part of everyone’s health care?

At the moment, we have the practice that fetuses are tested for certain conditions. To give you an idea of what this means in practice, in 2009, the abortion rate for fetuses diagnosed with Down’s syndrome in the UK was 92%.

Also, embryos created with IVF are subjected to PGD (pre-implantation genetic diagnosis), which has been around for decades. The use of IVF is rising.

Right now, the UK’s Human Fertilisation and Embryology Act 2008 states that “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop: (a) a serious physical or mental disability, (b) a serious illness, or (c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”

Who decides what a serious physical or mental disability, a serious illness, or any other serious medical condition is? In practice, that’s the UK Human Fertilisation & Embryology Authority. Currently, embryos with one of 400 conditions such as a genetic form of dwarfism called achondraplasia or Down’s syndrome are never used in IVF in Britain. Deselection of embryos with other conditions is awaiting approval.

Will the same eventually happen when techniques like CRISPR go mainstream?

This may all sound far off right now, but within the next few decades, human procreation is bound to change drastically. It is likely that we will eventually stop using sex to create babies. Instead, we will make all our babies “in the lab” and let the embryo develop in an artificial womb.

There is nothing wrong with that. We’ll get used to it, just like we got used to cars, trains and planes or the fact that women can attend universities now whereas they weren’t allowed to in the not too distant past.

But it will also mean that we’ll be able to do a lot more genetic tweaking. We need to start thinking about these upcoming changes now. What kind of society do we want to see develop? Do we want people to resemble each other more and behave in similar ways?

There are several reasons for not eagerly fixing too many “defects” that lead to viable human beings who live worthwhile lives, other than that groups of people are starting to demand the right not to be “edited out”.

  • The first is that there are currently several ongoing trends of emancipation. This includes the emancipation of persons with a wide range of conditions who we used to lock up and keep out of society. Deaf people and blind people, people with learning disabilities and so on. This emancipation is leading to accomplishments that we didn’t consider possible only a very short while ago. Particularly people with Down’s syndrome currently keep astonishing us all. Many have jobs now, and some serve as city councillor, become artists or are getting academic degrees.
  • A second reason is that we don’t know whether we may have a particular need for persons with various conditions such as autism spectrum disorder in the future. It is unlikely that we will continue to communicate the way we do now. Maybe we’ll end up communicating solely via images. We may well discover that those of us who now seem best suited for keeping up in society will fall behind then because they lack certain talents. We need the greatest neurodiversity possible.
  • A third reason is that lots of so-called impairments are nothing more but hindrances created by society. Better education and continued emancipation will see many of these hurdles disappear.
  • A fourth reason is that technological progress itself will come up with a wide range of solutions to accommodate everyone. Once more humans start integrating technology into their bodies – we are already seeing some of that – there soon won’t be any remaining limitations for those currently still considered impaired.

For more on the topic, see also this article in Nature, by David Cyranoski:
China’s embrace of embryo selection raises thorny questions (16 August 2017).

What do I know about pain and suffering, you ask?

What do I know about pain and suffering, you ask?

In view of what I have been saying and will still write about little Charlie Gard’s situation and other topics in bioethics, I feel that it is justified when people ask what experience I have with pain and suffering in (physical) medical situations.

Here are answers.

Personally, I’ve been very lucky. I have a bunch of allergies, but none very serious, and the worst medical situations I’ve had were a traffic accident that led to a very serious concussion and a broken nose (in my teens) and pneumonia (in early 2017). I’ve also undergone a simple procedure to drain my sinuses (in my early 20s). Oh, and I have pigment dispersion syndrome, a fairly mechanical eye condition that is a high risk factor for glaucoma. I don’t have children of my own, by the way.

I was born in 1960 – I am a Libra – and am the eldest of three daughters; we are 3 years and 6 years apart (and a universe, it seems). My mother had a miscarriage after me, a baby boy who would have been called Paul, which is why the name of my teddy bear was Paul. (I didn’t name him.) Shortly after my birth or my sister’s birth – I don’t remember which it was; she told me about this much later – my mother found a lump in one of her breasts. She was told it was just a swollen milk gland and went on with her life.

There is a possibility that my mother was given DES (diethylstilbestrol) after that miscarriage. Both my sisters (and I) are cancer-free, to my knowledge. My sister has had two C-sections, however, and in theory, DES may have played a role in my mother’s illness, if it was given to her, though even then, it is only associated with a modestly increased risk of breast cancer.

(My other sister has no children either.)

As my mother’s was the only case of breast cancer in my maternal family that I am aware of, there clearly doesn’t seem to be a particular gene involved. My sisters and I have long passed the age at which my mother contracted breast cancer.

My mother had all her teeth removed surgically as was still often done in those days, after which she came home in an ambulance and spit a lot of blood into a bucket beside her bed. She had surgery for a large kidney stone which she got to take home in a little tube and which had caused a pain in her flank. I think that kidney surgery was in 1968.

(Off and on, you can hear from my phrasing how young I was at the time, how much or little I understood about what was going on.)

She became increasingly unwell and was unfortunately sent to physical therapy… sigh… because her cancer had already metastasised so much that it had gotten into her bones. She’d come home in incredible pain. I don’t remember what got “them” (whoever) to figure out that something else was going on.

The breast was surgically removed and the wound never healed, no matter how much ointment was applied. The cancer also affected my mother’s vocal chords; she told me that if she’d been for example a teacher, she would have needed surgery for that as well. She was treated by Dr Lokkerbol (who received training in the UK, by the way), underwent radiation (cobalt) and had some kind of chemo (not “real” chemo, but I can’t explain what wasn’t “real” about it, other than maybe it was less aggressive and didn’t make her go bald). It was (also) administered at home, by a nurse.

It was a slightly yellowish fluid that came in glass ampoules. It was not very stable and I’ve had to tell the pharmacy several times to return it when I could see that it had already gone bad (flocculation/crystallization). My mother’s white cells were monitored because the chemo made them go down and when the number of white cells declined too much, the administration of the chemo had to stop. This was the opposite of leukemia, my mother explained to me, because then you had too many white cells.

She had increasingly trouble walking, needed a cane, and in the end couldn’t even go to the bathroom unassisted. I remember helping her, holding her arm, steadying her, and wondering how my mother was feeling about her daughter helping her go to the bathroom. My mother had had a very happy childhood, but was raised in a fairly old-fashioned manner, after all. One did not talk about periods, for instance. They were a dark secret best kept to oneself. Sanitary napkins as big as diapers were provided and a special kind of (horrible) lined underwear, and that was that.

Also, my youngest sister almost died too in the meantime when her appendicitis was misdiagnosed as a bladder problem. That misdiagnosis is quite common, but if it hadn’t been for my father’s vigilance, my sister really might have died. Her fever ran up to nearly 42 degrees C and the hospital was cooling her with ice. They couldn’t operate, had to wait for my sister to stabilize first. I think my sister was 4 or 5 at the time. (Children visitors weren’t allowed on the ward, by the way.)

Anyway, I must have been in my 5th year in primary school (which has 6 years in total) when my mother became increasingly unwell as I was taking French conversation classes in our local city centre – my mother loved how the language sounded and loved saying mu-sjuh even though its proper pronunciation is muss-yuh – and I had to be taken there and collected again. I was able to finish the first year, but there was a second year, in my 6th year in primary school, from which I had to drop out pretty soon. Taking me to the language school and collecting me often was arranged in conjunction with hospital visits one way or another until that was no longer possible. (I later also sometimes or often accompanied my mother to the hospital shortly before she died, by the way. I had Wednesday mornings off in the school year in which my mother passed away. There were so many students that year that the school was forced to introduce early and late classes.)

Meanwhile, our dog got cancer too and had to be put down. She was 6 months older than I was.

Then one day, my mother’s favourite sister stopped by. She sat on the wooden bench in our large kitchen, in a serious conversation with my mother. I don’t remember whether she was on her way to or on her way back from a hospital visit. I think she was on her way home, though, and had decided to stop in on my mother to tell her about how she’d been bleeding. The bus she took passed our house and the bus stop was very close to our home. My mom’s sister – my aunt – died shortly after that visit. That must have been cervical or uterine cancer.

During one of her many hospital stays, my mother said no and put her foot down when they wanted to place her in the room in which her sister had died. (My mother had also said no and put her foot down when the kindergarten teachers wanted to keep me for another year because I was so young, at 5. I went on to be the youngest in my class and the one with the best grades for 6 consecutive years in primary school, so thanks, Mams.)

Meanwhile, one of my mother’s older brothers had been diagnosed with a brain tumour after he developed problems with an arm. The doctors didn’t tell him at the time; presumably the tumour was inoperable. I don’t know which symptoms that eventually resulted in, but when the decline came, it happened fast. He passed away shortly after my mother, who passed away in her sleep at home in February 1975, my dad and one of my mother’s brothers sitting next to her, my dad asleep at the time, but awoken by my uncle. My mother was only 42.

Everybody responds to these situations in their own way. There is no right or wrong about it. My mother’s family seemed to deal with her death in their characteristic cold manner (stiff upper lip). One evening, I found them arguing outside with my dad over the exact wording in an announcement that had already appeared in a newspaper (so the arguing served no purpose, in my eyes). It got too much for my dad (complete lack of stiff upper lip) who literally ran off, onto the moors behind our home. I shouted at my aunt and uncle that they had to understand that the man had just lost his wife, for crying out loud, and went to retrieve my dad. I was angry with my relatives, back then, but I can see now that they merely were dealing with the situation in the only way they knew. My dad was often angry with the medical profession. It wasn’t always justified – sometimes it was just his powerlessness talking – but in some cases, he certainly did have a point.

Both my parents had little education beyond primary school, by the way.

The farm on which my mother grew up.

By contrast, my mother’s mother passed away at 91 or thereabouts, after these three of her children had died. She had already lost several children at very young ages as well as her husband. I have a lot of my grandmother in me, which is only becoming clearer as I am getting older. It is a very interesting observation, one that makes me smile and makes me feel more connected with her, and with my family in general.

My other experiences with medical situations are fairly “remote”.

My mother’s remaining sister passed away of stomach cancer, but she was in her 80s then. Stomach cancer is often diet-related, so I understand. One of her remaining brothers passed away from lung cancer in his 70s. He’d been exposed to a lot of dust and had been a smoker (cigars, though he probably smoked cigarettes when he was younger). He also was incredibly stubborn. (I can’t help but wondering whether he perhaps was also allergic to wheat, barley and rye, which can cause lung problems, and which wouldn’t have helped. Besides cancer, allergies seem to run on my mother’s side of the family.) The remaining brother passed away “from old age” as far as I know. I wasn’t around for any of that as, again, I was out of the country.

My father was diagnosed with pneumonia in October last year, and with lung cancer in November; he passed away shortly before Christmas, and was 83 at the time. I wasn’t around for that either.

I know that one of my French-born cousins on my father’s side contracted lung cancer in her 50s or so and passed away shortly after that, leaving a child of only 12-years old or so behind. My cousin’s husband had died shortly before her. Another cousin then adopted the child, bless him.

I know of and knew 5 or 6 women in science who fell ill in their 50s, were diagnosed with cancer and passed away shortly after. I’ve been to the homes of a few of them. A business partner contracted prostate cancer at an age much younger than usual, seemed cured and then succumbed after all. Dammit. He called me in 2010, and explained to me everything that had been going on and I am still grateful for and touched by the vulnerability he was willing to show during that conversation. (I wish I could have been there for him a little bit more than I was able to at the time.) I know one brilliant woman in science who was also a dedicated and talented modern dancer who very cruelly developed progressive MS and my heart bleeds for her as I am typing this. (This situation particularly makes me feel angry and powerless, by the way.)

I also used to have an older friend whose health started to falter when she was only in her 50s. She already needed a hip replacement then. During the surgery, the surgeon accidentally cut through a muscle, which was discovered during a second surgery after she had fallen and needed surgery to repair the damage of the fall. After that, she was so happy she could walk normally again. (I can still see her in her flat, proudly and delightedly showing me that she could walk again, walking back and forth. Look, look! “Ik loop weer als een kieviet!”) She later contracted two kinds of cancer (one of which was leukemia) and passed away too, but I was not around for that. (Her partner, whom I also used to know, developed cancer of the esophagus. He passed away at home, made comfortable with a lot of morphine, his feet being massaged at the time. Some things were definitely done right in that case. I was not around, not in the country.)

Yes, I also know a few people who had their gallbladders removed, usually very urgently, but that’s different. There are other people, of course, who have crossed my path and who have experienced medical tribulations – one of them a Dutchwoman in France who beat a very bad cancer prognosis – but I can’t really claim them as part of their life. And of course, there are other kinds of pain and suffering, but I am leaving that for another time (see this post).

Having seen my mother suffer for so long, witness her be in pain for so many years, made me immensely relieved for her when she passed away (though for myself I despaired). I therefore must always be aware of having an emotional response when someone is seriously ill. I do not believe in extending life artificially as long as possible in all situations. It can be very selfish and be the expression of a consumerist view of medicine. Doctors are not omniscient and omnipotent. They are mere humans, just like all of us. Nature – life – is still the real head honcho, when it comes to the crunch.

(But, I’d probably have loved to be a veterinarian, I realized late in life. A false belief that I was squeamish – am not – and couldn’t handle the sigh of blood – I sure can – kept me out of it. When I was volunteering in wild-bird rehab and they called me inside after someone else had fainted, that slowly became clear to me and I did explore that. So I can probably put myself in the shoes of the doctor somewhat and for instance understand that what may come across as arrogance in doctors often isn’t. This does not mean that I don’t get ticked off at physicians who really are out of line, of course.)

So like I said, I have to be aware of my own feelings (a gut response which I may not always notice right away) and therefore I try to apply logical reasoning – which can come across as very cold – as much as possible. That is also the way to arrive at just (fair, unbiased) conclusions and definitions that hold up regardless of feelings or believes and protects against abuse and arbitrariness. It has a highly clarifying function. It makes things a lot clearer. It is also highly practical.

There was a time when we pointed the fingers at doctors and accused them of playing God when they helped patients stay alive. Now we’re often quick to accuse doctors of playing God when doctors don’t want to force anyone who isn’t viable to stay alive. Technology is starting to make crucial differences. This leads to many very difficult questions about which we – preferably in a global consensus – have to make decisions. We need to start agreeing on what we do want to do and what we don’t want to do. We need good guidelines.

For the record: Notably my middle sister will remember a different past. She had a persistent skin (yeast?) infection as a newborn, I think, but as I was 3 at the time, can I really have remembered that? May it have concerned my youngest sister around whose birth I was sent to stay with an aunt and uncle? I remember that I was not sure if she was real, at first, as a newborn baby. (She looked like a doll!)

But my middle sister also had children’s diseases that my youngest sister and I did not contract. She experienced mumps, whereas we all fell ill with measles at the same time. She also was ill with jaundice as a child (presumably due to some kind of liver infection; the common Dutch phrase was “yellow paint”). Both my sisters got chickenpox as children, which I had when I was in my early 20s. And, my middle sister was sent away to stay with an aunt and uncle around the time of my mother’s death; she once told me that herself and I had not remembered that. So her memories are very different.

That must have been very hard for her because I do remember that when she was 4 or 5, she insisted on seeing our paternal granddad before he died, tubes and all, in hospital, and fought to be kept out of school that afternoon. (None of us three had been close to him; I don’t think he was a pleasant man at all.)

We all deal with pain, suffering and death in our own way. There is no “right” way or “wrong” way.

Both my sisters saw my mother after she had passed away, at the funeral home. I never saw her dead. I didn’t want to. I wanted to preserve the memory I had from when she was still alive. She used to sing often. and was often pictured with a very broad smile in various photos before she became really ill.

My response to Dr Seidel’s post on the BMJ blog (Baby genome screening—paving the way to genetic discrimination?)

I just submitted the following comment, here:
http://blogs.bmj.com/bmj/2017/07/05/markus-g-seidel-baby-genome-screening-paving-the-way-to-genetic-discrimination/
It is still in moderation. has been accepted. Yes, it was far from flawless – I wrote most of it at the spur of the moment – but I think that what I mean is clear enough. I have done some editing in the version below.

Dear Dr Seidel, thank you for making these very important points.

I am taking the opportunity to offer a few suggestions for discussion and invite more views on these issues. Some of what I write below only emerged during the writing of this response and may not be watertight. Can you withhold initial judgement, think along with me and see it as an exercise in exploring the various angles?

But first of all, please forgive me my shortcomings; I phrase various concepts differently than you do as my background is not in medicine and I tend to shy away from jargon. Also, what I say is not limited to newborns, but that will be obvious to this audience. The principles largely remain the same, whether we are talking about a pre-embryo, a fetus or a newborn, and whether I call them person, individual or child. (Legally, this is currently much more complex, as you know.) My focus in this discussion does not extend to persons beyond the age of majority (likely not even beyond 8 or 10, in practice) and I am also keeping the concept of euthanasia out of the discussion even though it is related. Worst of all, I throw all techniques related to genetic material into one big pot because it enables me to see the bigger picture better.

I write from my own perspective of an opinionated white woman in the west, but when I say “we”, my intention is to refer to the human species. People from other cultures will undoubtedly spot biases in my western views; I would like those people to point out those biases.

You ask whether genome screening for newborns will pave the way to genetic discrimination. You also raise the question of the interpretation (and reliability) of such data and you have privacy concerns.

With regard to the latter, I think that we will slowly have to accept that the digital age comes with the loss of privacy in many ways. That does not have to be as dramatic as it sounds. Privacy is a changing concept anyway, which also has a cultural angle to it. The realization that people from different generations and from different cultures have slightly different views on what privacy is may add some perspective that can make us breathe easier. So we should probably become more relaxed about the loss of privacy as we knew it and focus more on preventing and ameliorating potential negative consequences of that loss, if any. The real issue is not the loss of privacy, but abuse of personal information.

In my opinion, what we need to do is ensure non-discrimination and make certain that genomic information will only be used to improve any individual’s (medical) care. (The data can become part of studies, anonymized or not; we also need to redefine consent, but I am going to leave that out of this discussion too.) In other words, genomic information must only be used to enable and allow human beings to flourish.

Even a word like “flourish” or “thrive” is highly ambiguous, though. I mean it in a non-materialistic manner, whereas some others do not at all. Perhaps I can break it all down into stages to show what I mean within this specific context. Perhaps I can break it down to show what I mean within this context.

You mention the Hippocratic Oath, which some define as “Do no harm”. Harm is another concept that we don’t agree on yet and that we – therefore? – haven’t been able to define well.

I think that we need to start applying the principle of non-discrimination to all new human life. I believe that we should consider every human individual is just as valuable – in a non-materialistic manner – as every other human individual.

When I toss this around, I run into a peculiar dilemma. While I must see a deaf or a blind person (as an example) as equally valuable as a hearing or sighted person, I cannot accept it when a hearing or sighted person is deliberately made (permanently) deaf or blind, for instance during a mugging or a work-related accident. This also applies with regard to so-called augmentations. I cannot take a human being against his or her wishes and carry out a nose reconstruction or even inject botox. That makes me realize that harm done to a human appears to be any interference or change that occurs against that human being’s wishes and is implemented by someone else.

For now, I have to limit this to physical changes because the area of psychological changes is too complicated. (Just think of schools; we do not take bad teachers to court for being bad teachers, but we do take bad surgeons and physicians to court for being bad doctors, also because the evidence related to the latter is often much clearer.) Physical interference that occurs against a person’s wishes can of course also result in psychological changes, but that does not actually matter for the concept of harm within this context.

The next problem I then run into is the fact that particularly an embryo, fetus or newborn has a very limited ability to express wishes, but and that also holds for young children. If I try to put myself in the shoes of a child, however, it becomes possible to define harm in spite of that limitation.

This – putting themselves in the shoes of the child, as adults – is what parents, guardians and other carers do all the time, of course. They sometimes have to make the decisions for the child and express the child’s wishes for the child, as if they were the child, using the knowledge they have as adults, knowledge that the child will have in the future but does not possess yet.

So, lLet’s step into a child’s feet, then. It is hard to imagine a sick or injured child that would want to get sicker and sicker and sicker or want to have a permanently festering wound resulting from an injury caused by a fall. So it is fair to say that anything we do toward remedying such a situation is in accordance with the child’s wishes, in essence, even in cases in which the child cannot even say “please make the pain go away”. It is what the child would want if it possessed the knowledge and abilities of an adult.

So, the first step in part of enabling a human – a child – to flourish is to attempt to prevent any deterioration of the child’s health.

We may have to start agreeing that this cannot be considered harm within this context, even if the chance of success is small, certainly in cases for which there are no alternative remedies. We may even have to decide that doing nothing constitutes harm when there is still an option of doing something.

If a child has appendicitis, a surgeon will have to cut into the child’s abdomen in order to remove the appendix to prevent deterioration of the child’s health or even death. Strictly speaking, cutting into a child’s abdomen constitutes inflicting an injury, but in this case, as it is done with the intention of preventing greater harm, namely the deterioration of the child’s health, it does not constitute harm within this context we do not see it as harm. (This may be be an example of where I display a western bias?)

(Of course, we can still take the surgeon to court if his or her work fails to meet professional standards, but that is a different type of harm. We certainly need professional standards.)

We can also take a child to the dentist and the dentist may have to inflict some discomfort in order to prevent deterioration of the child’s health.

By contrast, we should not, however, drag a child along kicking and screaming to have its ears pierced as this is not done with the aim of preventing a deterioration of health. (If a child asks to have its ears pierced, there is a clear wish on the side of the child.)

Note that the intention matters. When a procedure is carried out with the intention of wanting to prevent deterioration of health, we never have 100% certainty that the intended result will be achieved. (This may have implications for how we think about practices carried out in other cultures. Keep this at the back of your mind. Our own western views are not the only views that hold value.)

The second step vital part of enabling a human being to flourish is to do everything we can within a daily-life context to allow that person to thrive on the basis of the person’s given physical (and mental) situation.

We send children to playgrounds to let them play with other children and test their physical limits, we feed them, clothe them and provide shelter as well as love and all those other concepts that are hard to measure but easy to grasp. In essence, this is no different for children who are, say, blind or deaf or who have Down syndrome.

The BBC news site just highlighted a very nice albeit exceptional example of what I mean by flourishing within this context: http://www.bbc.co.uk/news/m…

To do everything we can to allow that child to thrive is also required for children who are born with a medical condition that requires some form of medication or extra nutritional care to prevent deterioration of health. This, I think, is where standard genomic testing of newborns can play a pivotal role. These days, parents still too often have to conclude that something is seriously genetically wrong with their child on the basis of the deterioration of the child’s health, which in some cases means that irreversible damage has already occurred to the child’s health.

So, failure to provide such testing (screening) from the point in the future at which we know how to do and use this properly and reliably could perhaps also be seen as harm as it could lead to the preventable deterioration of a child’s health and would not encourage the child to thrive.

The third step next level within this context of enabling someone to flourish – and this is where it gets even trickier – is interfering with the child’s genetic make-up.

We may feel that the child is flawed, whereas the child is actually viable and does will not suffer a deterioration of health or be at great risk of certain complications if we allow it to live. At the moment, we often prevent such a child from coming into the world. This is where, I think, we need to draw the line and have to take a step back. It is a discriminatory practice because it appears to express a value judgement.

I also think that because of limited resources, we may need to approach this in a stepped manner.

What I mean is that if we initially limit techniques like CRISPR and gene therapy to all situations in which a resulting child would have “a life not worth living”, then we might have a fairly just and affordable way to start implementing CRISPR, gene therapy and anything else that may come along. Once we’ve done that, we can slowly start to take it forward, extend it to other conditions. The costs of such techniques will come down. and if we start with rare diseases that are currently incurable, we also limit the initial costs of implementation.

The loss of privacy may actually become an advantage because openness makes it also much easier to detect abuse of information and to safeguard against discrimination.

One of the reasons why I strongly believe that we need to start implementing non-discrimination for all new human life is the following. Once humans start interfacing with technology, other so-called impairments – which are currently often either biased opinions or restrictions imposed by society – cease to be impairments, taking away much of the motivation for “correcting” these individuals.

Moreover, not only do we – the human race as well as society – need diversity, we may have future needs for abilities of which we currently don’t realize that some people possess them. Those may well be people who are currently considered “impaired” or “flawed”. Junk DNA was once considered just that, too.

As I already indicated, we need a workable definition of what constitutes a life not worth living and once we have one (I may have found one, by the way, based on the principle of humanity), we may end up concluding that these are the primary cases in which we actually have a duty to interfere with the child’s genetic make-up.

So I agree with you that we have to exercise restraint, in spite of all the enormously exciting developments we currently see around us. Discrimination is not the only concern and neither are interpretation and costs. We don’t know all the possible consequences yet of the application of any of those new developments, even if we think we do.

We have made many decisions in the past without asking questions that now are so blatantly obvious in hindsight. Did nobody foresee that insecticides might also affect bees and birds and amphibians, to name just one example of a past mistake, albeit a highly significant one that now also affects human fertility?

We have another reason to take it slow, namely the fact that laws and regulations lag behind, evolve in response to arising situations in real life, and rarely anticipate on what may happen in the future. Legal professionals, too, tend to think conservatively and in a geographically limited manner. It’s probably the UN and WHO who should start taking the lead in this area, and guide us into the future. Do they need a push? Should we apply pressure?

Because perhaps more than anything else, we need to work toward reaching a global consensus (including legislation) on such important matters, irrespective of how challenging and impossible that may seem. It was also once completely unimaginable that we’d have humans land on the moon, so if we did that, then we can accomplish so much more than we think we can.

Reblogged: Human genome editing: We should all have a say

File 20170731 22134 1s9uda
Controversial gene editing should not proceed without citizen input and societal consensus.
(Shutterstock)

Françoise Baylis, Dalhousie University

Shoukhrat Mitalipov, a reproductive biologist at Oregon Health and Science University, is nothing if not a pioneer. In 2007, his team published proof-of-principle research in primates showing it was possible to derive stem cells from cloned primate embryos. In 2013, his team was the first to create human embryonic stem cells by cloning. Now, in 2017, his team has reported safely and effectively modifying human embryos with the MYBPC3 mutation (which causes myocardial disease) using the gene editing technique CRISPR.

Mitalipov’s team is not the first to genetically modify human embryos. This was first accomplished in 2015 by a group of Chinese scientists led by Junjiu Huang. Mitalipov’s team, however, may be the first to demonstrate basic safety and efficacy using the CRISPR technique.

This has serious implications for the ethics debate on human germline modification which involves inserting, deleting or replacing the DNA of human sperm, eggs or embryos to change the genes of future children.

Ethically controversial

Those who support human embryo research will argue that Mitalipov’s research to alter human embryos is ethically acceptable because the embryos were not allowed to develop beyond 14 days (the widely accepted international limit on human embryo research) and because the modified embryos were not used to initiate a pregnancy. They will also point to the future potential benefit of correcting defective genes that cause inherited disease.

This research is ethically controversial, however, because it is a clear step on the path to making heritable modifications – genetic changes that can be passed down through subsequent generations.

Beyond safety and efficacy

Internationally, UNESCO has called for a ban on human germline gene editing. And the “Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine” – the Oviedo Convention – specifies that “an intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants.”

In a move away from the positions taken by UNESCO and included in the Oviedo Convention, in 2015 the 12-person Organizing Committee of the first International Summit on Human Gene Editing (of which I was a member) issued a statement endorsing basic and preclinical gene editing research involving human embryos.

The statement further stipulated, however, that: “It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application.”

Mitalipov’s research aims to address the first condition about safety and efficacy. But what of the second condition which effectively recognizes that the human genome belongs to all of us and that it is not for scientists or other elites to decree what should or should not happen to it?

Modification endorsed

Since the 2015 statement was issued, many individuals and groups have tried to set aside the recommendation calling for a broad societal consensus.

For example, in February 2017, the U.S. National Academy of Sciences and National Academy of Medicine published a report endorsing germline modification. It states unequivocally that “clinical trials using heritable germline genome editing should be permitted” provided the research is only for compelling reasons and under strict oversight limiting uses of the technology to specified criteria.

Seeds of change in Canada

In Canada, it is illegal to modify human germ cells. Altering “the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants” is among the activities prohibited in the 2004 Assisted Human Reproduction Act.

Worried that “Canadian researchers may fall behind on the international scene” and that “restrictive research policies may lead to medical tourism,” the Canadian Institutes for Health Research (with input from the Canadian Stem Cell Network) has begun to plant the seeds of change.

In its Human Germline Gene Editing report, CIHR hints at the benefits of changing the legislation. It also suggests professional self-regulation and research funding guidelines could replace the current federal statutory prohibition.

Future of the species

With Mitalipov’s technological advances and increasing suggestions from researchers that heritable modifications to human embryos be permitted, it is essential that citizens be given opportunities to think through the ethical issues and to work towards broad societal consensus.

We are talking about nothing less than the future of the human species. No decisions about the modification of the germline should be made without broad societal consultation.

The ConversationNothing about us without us!

Françoise Baylis, Professor and Canada Research Chair in Bioethics and Philosophy, Dalhousie University

This article was originally published on The Conversation. Read the original article.

Reblogged: Super-intelligence and eternal life: transhumanism’s faithful follow it blindly into a future for the elite

File 20170609 32437 9sfejw
Distant Earth.

Alexander Thomas, University of East London

The rapid development of so-called NBIC technologies – nanotechnology, biotechnology, information technology and cognitive science – are giving rise to possibilities that have long been the domain of science fiction. Disease, ageing and even death are all human realities that these technologies seek to end.

They may enable us to enjoy greater “morphological freedom” – we could take on new forms through prosthetics or genetic engineering. Or advance our cognitive capacities. We could use brain-computer interfaces to link us to advanced artificial intelligence (AI).

Nanobots could roam our bloodstream to monitor our health and enhance our emotional propensities for joy, love or other emotions. Advances in one area often raise new possibilities in others, and this “convergence” may bring about radical changes to our world in the near-future.

“Transhumanism” is the idea that humans should transcend their current natural state and limitations through the use of technology – that we should embrace self-directed human evolution. If the history of technological progress can be seen as humankind’s attempt to tame nature to better serve its needs, transhumanism is the logical continuation: the revision of humankind’s nature to better serve its fantasies.

As David Pearce, a leading proponent of transhumanism and co-founder of Humanity+, says:

If we want to live in paradise, we will have to engineer it ourselves. If we want eternal life, then we’ll need to rewrite our bug-ridden genetic code and become god-like … only hi-tech solutions can ever eradicate suffering from the world. Compassion alone is not enough.

But there is a darker side to the naive faith that Pearce and other proponents have in transhumanism – one that is decidedly dystopian.

There is unlikely to be a clear moment when we emerge as transhuman. Rather technologies will become more intrusive and integrate seamlessly with the human body. Technology has long been thought of as an extension of the self. Many aspects of our social world, not least our financial systems, are already largely machine-based. There is much to learn from these evolving human/machine hybrid systems.

Yet the often Utopian language and expectations that surround and shape our understanding of these developments have been under-interrogated. The profound changes that lie ahead are often talked about in abstract ways, because evolutionary “advancements” are deemed so radical that they ignore the reality of current social conditions.

In this way, transhumanism becomes a kind of “techno-anthropocentrism”, in which transhumanists often underestimate the complexity of our relationship with technology. They see it as a controllable, malleable tool that, with the correct logic and scientific rigour, can be turned to any end. In fact, just as technological developments are dependent on and reflective of the environment in which they arise, they in turn feed back into the culture and create new dynamics – often imperceptibly.

Situating transhumanism, then, within the broader social, cultural, political, and economic contexts within which it emerges is vital to understanding how ethical it is.

Competitive environments

Max More and Natasha Vita-More, in their edited volume The Transhumanist Reader, claim the need in transhumanism “for inclusivity, plurality and continuous questioning of our knowledge”.

Yet these three principles are incompatible with developing transformative technologies within the prevailing system from which they are currently emerging: advanced capitalism.

Perpetual doper or evolutionary defunct?
Shutterstock

One problem is that a highly competitive social environment doesn’t lend itself to diverse ways of being. Instead it demands increasingly efficient behaviour. Take students, for example. If some have access to pills that allow them to achieve better results, can other students afford not to follow? This is already a quandary. Increasing numbers of students reportedly pop performance-enhancing pills. And if pills become more powerful, or if the enhancements involve genetic engineering or intrusive nanotechnology that offer even stronger competitive advantages, what then? Rejecting an advanced technological orthodoxy could potentially render someone socially and economically moribund (perhaps evolutionarily so), while everyone with access is effectively forced to participate to keep up.

Going beyond everyday limits is suggestive of some kind of liberation. However, here it is an imprisoning compulsion to act a certain way. We literally have to transcend in order to conform (and survive). The more extreme the transcendence, the more profound the decision to conform and the imperative to do so.

The systemic forces cajoling the individual into being “upgraded” to remain competitive also play out on a geo-political level. One area where technology R&D has the greatest transhumanist potential is defence. DARPA (the US defence department responsible for developing military technologies), which is attempting to create “metabolically dominant soldiers”, is a clear example of how vested interests of a particular social system could determine the development of radically powerful transformative technologies that have destructive rather than Utopian applications.

Designing super-soldiers.
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The rush to develop super-intelligent AI by globally competitive and mutually distrustful nation states could also become an arms race. In Radical Evolution, novelist Verner Vinge describes a scenario in which superhuman intelligence is the “ultimate weapon”. Ideally, mankind would proceed with the utmost care in developing such a powerful and transformative innovation.

There is quite rightly a huge amount of trepidation around the creation of super-intelligence and the emergence of “the singularity” – the idea that once AI reaches a certain level it will rapidly redesign itself, leading to an explosion of intelligence that will quickly surpass that of humans (something that will happen by 2029 according to futurist Ray Kurzweil). If the world takes the shape of whatever the most powerful AI is programmed (or reprograms itself) to desire, it even opens the possibility of evolution taking a turn for the entirely banal – could an AI destroy humankind from a desire to produce the most paperclips for example?

It’s also difficult to conceive of any aspect of humanity that could not be “improved” by being made more efficient at satisfying the demands of a competitive system. It is the system, then, that determines humanity’s evolution – without taking any view on what humans are or what they should be. One of the ways in which advanced capitalism proves extremely dynamic is in its ideology of moral and metaphysical neutrality. As philosopher Michael Sandel says: markets don’t wag fingers. In advanced capitalism, maximising one’s spending power maximises one’s ability to flourish – hence shopping could be said to be a primary moral imperative of the individual.

Philosopher Bob Doede rightly suggests it is this banal logic of the market that will dominate:

If biotech has rendered human nature entirely revisable, then it has no grain to direct or constrain our designs on it. And so whose designs will our successor post-human artefacts likely bear? I have little doubt that in our vastly consumerist, media-saturated capitalist economy, market forces will have their way. So – the commercial imperative would be the true architect of the future human.

System-led evolution.
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Whether the evolutionary process is determined by a super-intelligent AI or advanced capitalism, we may be compelled to conform to a perpetual transcendence that only makes us more efficient at activities demanded by the most powerful system. The end point is predictably an entirely nonhuman – though very efficient – technological entity derived from humanity that doesn’t necessarily serve a purpose that a modern-day human would value in any way. The ability to serve the system effectively will be the driving force. This is also true of natural evolution – technology is not a simple tool that allows us to engineer ourselves out of this conundrum. But transhumanism could amplify the speed and least desirable aspects of the process.

Information authoritarianism

For bioethicist Julian Savulescu, the main reason humans must be enhanced is for our species to survive. He says we face a Bermuda Triangle of extinction: radical technological power, liberal democracy and our moral nature. As a transhumanist, Savulescu extols technological progress, also deeming it inevitable and unstoppable. It is liberal democracy – and particularly our moral nature – that should alter.

The failings of humankind to deal with global problems are increasingly obvious. But Savulescu neglects to situate our moral failings within their wider cultural, political and economic context, instead believing that solutions lie within our biological make up.

Yet how would Savulescu’s morality-enhancing technologies be disseminated, prescribed and potentially enforced to address the moral failings they seek to “cure”? This would likely reside in the power structures that may well bear much of the responsibility for these failings in the first place. He’s also quickly drawn into revealing how relative and contestable the concept of “morality” is:

We will need to relax our commitment to maximum protection of privacy. We’re seeing an increase in the surveillance of individuals and that will be necessary if we are to avert the threats that those with antisocial personality disorder, fanaticism, represent through their access to radically enhanced technology.

Such surveillance allows corporations and governments to access and make use of extremely valuable information. In Who Owns the Future, internet pioneer Jaron Lanier explains:

Troves of dossiers on the private lives and inner beings of ordinary people, collected over digital networks, are packaged into a new private form of elite money … It is a new kind of security the rich trade in, and the value is naturally driven up. It becomes a giant-scale levee inaccessible to ordinary people.

Crucially, this levee is also invisible to most people. Its impacts extend beyond skewing the economic system towards elites to significantly altering the very conception of liberty, because the authority of power is both radically more effective and dispersed.

Foucault’s notion that we live in a panoptic society – one in which the sense of being perpetually watched instils discipline – is now stretched to the point where today’s incessant machinery has been called a “superpanopticon”. The knowledge and information that transhumanist technologies will tend to create could strengthen existing power structures that cement the inherent logic of the system in which the knowledge arises.

This is in part evident in the tendency of algorithms toward race and gender bias, which reflects our already existing social failings. Information technology tends to interpret the world in defined ways: it privileges information that is easily measurable, such as GDP, at the expense of unquantifiable information such as human happiness or well-being. As invasive technologies provide ever more granular data about us, this data may in a very real sense come to define the world – and intangible information may not maintain its rightful place in human affairs.

Systemic dehumanisation

Existing inequities will surely be magnified with the introduction of highly effective psycho-pharmaceuticals, genetic modification, super intelligence, brain-computer interfaces, nanotechnology, robotic prosthetics, and the possible development of life expansion. They are all fundamentally inegalitarian, based on a notion of limitlessness rather than a standard level of physical and mental well-being we’ve come to assume in healthcare. It’s not easy to conceive of a way in which these potentialities can be enjoyed by all.

Will they come along for the ride?
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Sociologist Saskia Sassen talks of the “new logics of expulsion”, that capture “the pathologies of today’s global capitalism”. The expelled include the more than 60,000 migrants who have lost their lives on fatal journeys in the past 20 years, and the victims of the racially skewed profile of the increasing prison population.

Grenfell Tower, London, 2017.
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In Britain, they include the 30,000 people whose deaths in 2015 were linked to health and social care cuts and the many who perished in the Grenfell Tower fire. Their deaths can be said to have resulted from systematic marginalisation.

Unprecedented acute concentration of wealth happens alongside these expulsions. Advanced economic and technical achievements enable this wealth and the expulsion of surplus groups. At the same time, Sassen writes, they create a kind of nebulous centrelessness as the locus of power:

The oppressed have often risen against their masters. But today the oppressed have mostly been expelled and survive a great distance from their oppressors … The “oppressor” is increasingly a complex system that combines persons, networks, and machines with no obvious centre.

Surplus populations removed from the productive aspects of the social world may rapidly increase in the near future as improvements in AI and robotics potentially result in significant automation unemployment. Large swaths of society may become productively and economically redundant. For historian Yuval Noah Harari “the most important question in 21st-century economics may well be: what should we do with all the superfluous people?”

We would be left with the scenario of a small elite that has an almost total concentration of wealth with access to the most powerfully transformative technologies in world history and a redundant mass of people, no longer suited to the evolutionary environment in which they find themselves and entirely dependent on the benevolence of that elite. The dehumanising treatment of today’s expelled groups shows that prevailing liberal values in developed countries don’t always extend to those who don’t share the same privilege, race, culture or religion.

In an era of radical technological power, the masses may even represent a significant security threat to the elite, which could be used to justify aggressive and authoritarian actions (perhaps enabled further by a culture of surveillance).

Life in the Hunger Games.
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In their transhumanist tract, The Proactionary Imperative, Steve Fuller and Veronika Lipinska argue that we are obliged to pursue techno-scientific progress relentlessly, until we achieve our god-like destiny or infinite power – effectively to serve God by becoming God. They unabashedly reveal the incipient violence and destruction such Promethean aims would require: “replacing the natural with the artificial is so key to proactionary strategy … at least as a serious possibility if not a likelihood [it will lead to] the long-term environmental degradation of the Earth.”

The extent of suffering they would be willing to gamble in their cosmic casino is only fully evident when analysing what their project would mean for individual human beings:

A proactionary world would not merely tolerate risk-taking but outright encourage it, as people are provided with legal incentives to speculate with their bio-economic assets. Living riskily would amount to an entrepreneurship of the self … [proactionaries] seek large long-term benefits for survivors of a revolutionary regime that would permit many harms along the way.

Progress on overdrive will require sacrifices.

God-like elites.
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The economic fragility that humans may soon be faced with as a result of automation unemployment would likely prove extremely useful to proactionary goals. In a society where vast swaths of people are reliant on handouts for survival, market forces would determine that less social security means people will risk more for a lower reward, so “proactionaries would reinvent the welfare state as a vehicle for fostering securitised risk taking” while “the proactionary state would operate like a venture capitalist writ large”.

At the heart of this is the removal of basic rights for “Humanity 1.0”, Fuller’s term for modern, non-augmented human beings, replaced with duties towards the future augmented Humanity 2.0. Hence the very code of our being can and perhaps must be monetised: “personal autonomy should be seen as a politically licensed franchise whereby individuals understand their bodies as akin to plots of land in what might be called the ‘genetic commons’”.

The neoliberal preoccupation with privatisation would so extend to human beings. Indeed, the lifetime of debt that is the reality for most citizens in developed advanced capitalist nations, takes a further step when you are born into debt – simply by being alive “you are invested with capital on which a return is expected”.

Socially moribund masses may thus be forced to serve the technoscientific super-project of Humanity 2.0, which uses the ideology of market fundamentalism in its quest for perpetual progress and maximum productivity. The only significant difference is that the stated aim of godlike capabilities in Humanity 2.0 is overt, as opposed to the undefined end determined by the infinite “progress” of an ever more efficient market logic that we have now.

A new politics

Some transhumanists are beginning to understand that the most serious limitations to what humans can achieve are social and cultural – not technical. However, all too often their reframing of politics falls into the same trap as their techno-centric worldview. They commonly argue the new political poles are not left-right but techno-conservative or techno-progressive (and even techno-libertarian and techno-sceptic). Meanwhile Fuller and Lipinska argue that the new political poles will be up and down instead of left and right: those who want to dominate the skies and became all powerful, and those who want to preserve the Earth and its species-rich diversity. It is a false dichotomy. Preservation of the latter is likely to be necessary for any hope of achieving the former.

The ConversationTranshumanism and advanced capitalism are two processes which value “progress” and “efficiency” above everything else. The former as a means to power and the latter as a means to profit. Humans become vessels to serve these values. Transhuman possibilities urgently call for a politics with more clearly delineated and explicit humane values to provide a safer environment in which to foster these profound changes. Where we stand on questions of social justice and environmental sustainability has never been more important. Technology doesn’t allow us to escape these questions – it doesn’t permit political neutrality. The contrary is true. It determines that our politics have never been more important. Savulescu is right when he says radical technologies are coming. He is wrong in thinking they will fix our morality. They will reflect it.

Alexander Thomas, PhD Candidate, University of East London

This article was originally published on The Conversation. Read the original article.

How do we approach the future?

In the science, health and environment section of thehindu.com, an article appeared under the heading “Do we understand the genome well enough to let Big Pharma jump into it?”.

I left the following brief reply.

You make important points.

Markus G. Seidel, who works at the Department of Pediatrics and Adolescent Medicine of Medical University Graz in Austria, just wrote something similar on the site of the BMJ, with regard to babies. He asks whether genome screening for newborns will pave the way to genetic discrimination. He too raises the question about interpretation (and reliability) of such data. He also discusses privacy issues.

http://blogs.bmj.com/bmj/2017/07/05/markus-g-seidel-baby-genome-screening-paving-the-way-to-genetic-discrimination/

But I wanted to write more…

With regard to the latter, I think that humanity will slowly have to accept that the digital age comes with the loss of privacy in many ways. Privacy is a changing concept and there also is a cultural angle to it, so people from different generations and from different cultures have slightly different views on what privacy is. We probably should become more relaxed about the loss of privacy as we knew it and focus more on preventing and ameliorating potential negative consequences.

In my opinion, what we need to do is ensure non-discrimination and ensure that genomic information will only be used to improve any individual’s (medical) care. In other words, genomic information must only be used to enable and allow human beings to flourish. All human beings. In a non-materialistic way.

(Note that this is not the same as eradicating everything we may not like. But we seem to have a tendency to want to do that, unfortunately, and we need to curb that urge. We need a great deal of diversity to function well as a species and as a society, for many reasons. Good and bad cannot exist without each other – as cheesy as it may sound. There simply is too much we don’t know yet, and we therefore cannot foresee all possible consequences of everything we do. Eradicating everything that seems bad to us may be bad too.)

That will require two things: good legislation and regulations and a global consensus on these issues.

Particularly the latter is a major challenge. That is why we need to discuss these topics broadly and entice people to move out of their mental comfort zone, allowing them to explore other people’s views without instantly rejecting them. Our own views aren’t the only valid or even valuable views, but they tend to feel that way to us.

Legislation, however, also has a problem as it currently tends to display a big lag relative to what’s technologically possible. It does not anticipate (much), but responds after what is happening in practice forces it to respond. Also, legal scholars still tend to contemplate situations and consequences with regard to their own jurisdictions only.

So it looks like there is a great need for discussions pervaded by a spirit of tolerance (the willingness to step out of one’s mental comfort zone and listen to people from other cultures and generations) and a forward-thinking attitude.

By “forward-thinking”, I don’t mean “blindly embracing everything science and technology have to offer” because in the past, we’ve often forgotten to ask many questions we should have asked. That, for example, appears to have happened when we embraced pesticides. They seemed such a good thing, initially, that we never considered their obvious potential for bad.

Do you agree or do you see it differently? Do you think we also need to change big pharma, and if so, in which ways, and how could we approach that?

PS
I write from my own perspective of an opinionated white woman in the west without ties to big pharma.

Charlie Gard finally at peace

Initially, it felt wrong to say much more about it than that. So I didn’t.

A day has passed.

Many lessons are being learned, and Charlie Gard’s life and death have not been in vain. I too will be doing a write-up. For the sake of future Charlies and future babies’ parents, but also for the sake – I hope – of all the people who were touched by Charlie Gard’s short life. Towards greater understanding, I hope. Towards more compassion, too.

(Personally, I primarily do it to learn from it and because I enjoy the analytical process and the reasoning. But all the people who write about these issues help pave the way to a future in which we deal with such situations much more elegantly.)

I too felt torn the way everybody else seemed to be torn, and I too generally responded more emotionally rather than rationally to what I read here and there, and I too, like almost everybody else, didn’t have many facts.

Charlie Gard’s condition fell within my definition – not my feelings! – of what constitutes a life not worth living. We need objective definitions to prevent inequality and injustice, and, more importantly, to prevent harm.

I also seem to have managed to define harm for situations like these a while back, and having let Charlie Gard try the nucleoside therapy does not appear to qualify as such within my definition (which I need to write up properly). Whether or not Michio Hirano had a financial interest in the matter is immaterial.

So I have a lot of thinking – and writing – ahead of me, but it looks like my definitions continue to hold up. That comes as a surprise. It makes me conclude that I may be doing something good and useful, something worthwhile exploring.

That’s scary – for several reasons – and powerful – empowering – at the same time.

I will soon post something about my own experiences with this kind of pain and suffering – the medical kinds of pain of suffering – in view of the fact that I say so many things about other people’s pain and suffering in such situations, in what may occasionally come across as a cold and calculated manner to some.