Beyond Disadvantage: Disability, Law, and Bioethics

The above is the title of the 2018 Petrie-Flom Center Annual Conference, which took place in June. I had registered for the event because the topic interests me greatly and I have so much to learn in this area. Unfortunately, I turned out to be away and unable to attend after all.

I am delighted that the Petrie-Flom Center not only decided to make some of the lecture materials available beforehand, but recorded the lectures and has made the videos shareable.

Prominent point of discussion at he conference was the question whether a disability is merely a difference, or a bad difference. Putting the question like this is an oversimplification but it is a good starting point. I will discuss this matter and these lectures in greater detail in coming posts.

For now, here are the opening remarks, and first talks.

“Beyond Disadvantage: Disability, Law, and Bioethics” Opening Remarks and Panel 1: Theory and Definitions of Disability from Petrie-Flom Center on Vimeo.

 

 

 

#eugenics #designerbabies We really do need to talk about that

In my book “We need to talk about this” I am not trying to convince you of anything (other than that “we need to talk about this”).

I simply believe that it is important to move toward a global consensus on matters like the new eugenics, on how we see future generations and societies.

To reach a global consensus, we’ll all need to adapt. Some of us will have to take a step back while others have to move forward. A few of us can stay right where we are.

It means that you have to examine your own opinion, to see where exactly it comes from, and where necessary, adjust it. This will help you see where other people’s opinions are coming from, also if they’re not at all like your own.

Then you may suddenly discover that their views aren’t actually as different as you initially thought.

 

We need a global guideline for eugenics – urgently

People are currently focusing on Trump and his silly comments, but perhaps they should be focussing on Britain.

A few days ago, British newspaper The Guardian reported about a eugenics meeting that allegedly had been convened in secret, involving someone who has previously advocated child rape. This meeting is supposed to have taken place at University College London and white supremacists supposedly were present at this meeting. Continue reading

“We need to talk about this” – updated version

I am wrapping up the much improved version of “We need to talk about this“. There is now a chapter on euthanasia, for instance, with a discussion of the Groningen Protocol.

I didn’t write this book to convince you that my views are the right ones, even though I hope you will agree with many of them. I wrote this book to encourage as many people as possible to develop their own opinions in these areas, to go beyond impassioned exclamations like “this is so wrong” or “this is very good” and to make their opinions known to their governments and  academics, and to discuss these issues with their friends, relatives and colleagues. Continue reading

In places where it’s legal, how many people are ending their lives using euthanasia?

 

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One paper reported that between 0.3% to 4.6% of all deaths are reported as euthanasia or physician-assisted suicide in jurisdictions where they are legal.
Flickr/Alberto Biscalchin, CC BY-NC-ND

Andrew McGee, Queensland University of Technology

The Victorian Parliament will consider a bill to legalise euthanasia in the second half of 2017. That follows the South Australian Parliament’s decision to knock back a voluntary euthanasia bill late last year, and the issue has also cropped up in the run-up to the March 11 Western Australian election.

With the issue back in the headlines, federal Labor’s justice spokesperson, Clare O’Neil, told Q&A that in countries where the practice is legal, “very, very small” numbers of people use the laws.

Whether or not you agree with O’Neil’s statement depends largely on your interpretation of the subjective term “very, very small”, but there is a growing body of data available on how many people are using euthanasia or assisted dying laws in places such as the Netherlands, Belgium, Luxembourg, Colombia, Canada and some US states.

Assisted dying, assisted suicide and euthanasia

Many people use the terms “assisted dying”, “assisted suicide” and “euthanasia” interchangeably. But, technically, these phrases can have different meanings.

Assisted dying (sometimes also assisted death) is where the patient himself or herself ultimately takes the medication. Euthanasia, by contrast, is usually where the doctor administers the medication to the patient.

Assisted suicide includes people who are not terminally ill, but who are being helped to commit suicide, whereas assisted dying refers to people who are already dying. Some reports do not, however, distinguish between assisted dying and assisted suicide, and I will not distinguish them here.

In some jurisdictions, the word “euthanasia” is used to refer to both assisted dying/suicide (where the patient himself or herself takes the medication) and to euthanasia (where the doctor administers the medication to the patient). So “euthanasia” can sometimes be used as a broad term to cover a range of actions.

Euthanasia and assisted suicide rates around the world

According to a peer-reviewed paper published last year in the respected journal JAMA:

Between 0.3% to 4.6% of all deaths are reported as euthanasia or physician-assisted suicide in jurisdictions where they are legal. The frequency of these deaths increased after legalization … Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices.

The authors of that paper said that 35,598 people died in Oregon in 2015. Of these deaths, 132, or 0.39%, were reported as physician-assisted suicides. The same paper said that in Washington in 2015 there were 166 reported cases of physician-assisted suicide (equating to 0.32% of all deaths in Washington in that year).

Interestingly, the same paper noted that US data show that:

pain is not the main motivation for PAS (physician-assisted suicide)… The dominant motives are loss of autonomy and dignity and being less able to enjoy life’s activities.

The authors said that in officially reported Belgian cases, pain was the reason for euthanasia in about half of cases. Loss of dignity is mentioned as a reason for 61% of cases in the Netherlands and 52% in Belgium.

A 2016 Victorian parliamentary report has quoted from the UK Commission on Assisted Dying, which in turn referenced the work of John Griffiths, Heleen Weyers and Maurice Adams in their book Euthanasia and Law in Europe. The commission said:

There are no official data in Switzerland on the numbers of assisted suicides that take place each year, as the rate of assisted suicide is not collected centrally. Griffiths et al observe that there are approximately 62,000 deaths in Switzerland each year and academic studies suggest that between 0.3% and 0.4% of these are assisted suicides. This figure increases to 0.5% of all deaths if suicide tourism is included (assisted suicides that involve non‑Swiss nationals).

Around 3.7% of deaths in the Netherlands in 2015 were due to euthanasia. The Netherlands’ regional euthanasia review committees reported that there were 5,516 deaths due to euthanasia in 2015. That is out of a total of around 147,000 – 148,000 deaths in the Netherlands that year.

This figure represents an increase of 4% of deaths due to euthanasia compared to 2014.

A 2012 paper published in The Lancet reported on the results of nationwide surveys on euthanasia in the Netherlands in 1995, 2001, 2005 and 2010. The researchers said:

In 2002, the euthanasia act came into effect in the Netherlands, which was followed by a slight decrease in the euthanasia frequency … In 2010, of all deaths in the Netherlands, 2.8% were the result of euthanasia. This rate is higher than the 1.7% in 2005, but comparable with those in 2001 and 1995.

Another Netherlands-based study published in the journal JAMA Internal Medicine reported in 2015 that:

Certainly, not all requests are granted; studies conducted between 1990 and 2011 report rates of granting requests between 32% and 45%.

A 2015 paper in the New England Journal of Medicine about euthanasia rates in the Flanders region of Belgium (the northern half of the country) noted:

The rate of euthanasia increased significantly between 2007 and 2013, from 1.9% to 4.6% of deaths.

Filling in the bigger picture

It can be hard to put these rates in context, but what is clear is that euthanasia is by no means a leading cause of death in countries where it is legal. For example, Statistics Belgium said that for the year 2012, cardiovascular disease was the most common cause of death (28.8%), and cancer was the second most common cause of death (26%).

And in the Netherlands – where 5,516 of deaths were due to euthanasia in 2015 – more than 12,000 Dutch people died from the effects of dementia in 2014, approximately 10,000 Dutch people died from lung cancer and nearly 9,000 died from a heart attack. In 2013, 30% (about 42,000) of Dutch deaths were from cancer and 27% (about 38,000) of Dutch deaths were from cardiovascular disease.


The ConversationIf this article has raised issues for you or if you’re concerned about someone you know, call Lifeline on 13 11 44.

Andrew McGee, Senior Lecturer, Faculty of Law, Queensland University of Technology

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

How seeing problems in the brain makes stigma disappear

 

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A pair of identical twins. The one on the right has OCD, while the one on the left does not.
Brain Imaging Research Division, Wayne State University School of Medicine, CC BY-SA

David Rosenberg, Wayne State University

As a psychiatrist, I find that one of the hardest parts of my job is telling parents and their children that they are not to blame for their illness.

Children with emotional and behavioral problems continue to suffer considerable stigma. Many in the medical community refer to them as “diagnostic and therapeutic orphans.” Unfortunately, for many, access to high-quality mental health care remains elusive.

An accurate diagnosis is the best way to tell whether or not someone will respond well to treatment, though that can be far more complicated than it sounds.

I have written three textbooks about using medication in children and adolescents with emotional and behavioral problems. I know that this is never a decision to take lightly.

But there’s reason for hope. While not medically able to diagnose any psychiatric condition, dramatic advances in brain imaging, genetics and other technologies are helping us objectively identify mental illness.

Knowing the signs of sadness

All of us experience occasional sadness and anxiety, but persistent problems may be a sign of a deeper issue. Ongoing issues with sleeping, eating, weight, school and pathologic self-doubt may be signs of depression, anxiety or obsessive-compulsive disorder.

Separating out normal behavior from problematic behavior can be challenging. Emotional and behavior problems can also vary with age. For example, depression in pre-adolescent children occurs equally in boys and girls. During adolescence, however, depression rates increase much more dramatically in girls than in boys.

It can be very hard for people to accept that they – or their family member – are not to blame for their mental illness. That’s partly because there are no current objective markers of psychiatric illness, making it difficult to pin down. Imagine diagnosing and treating cancer based on history alone. Inconceivable! But that is exactly what mental health professionals do every day. This can make it harder for parents and their children to accept that they don’t have control over the situation.

Fortunately, there are now excellent online tools that can help parents and their children screen for common mental health issues such as depression, anxiety, panic disorder and more.

Most important of all is making sure your child is assessed by a licensed mental health professional experienced in diagnosing and treating children. This is particularly important when medications that affect the child’s brain are being considered.

Seeing the problem

Thanks to recent developments in genetics, neuroimaging and the science of mental health, it’s becoming easier to characterize patients. New technologies may also make it easier to predict who is more likely to respond to a particular treatment or experience side effects from medication.

Our laboratory has used brain MRI studies to help unlock the underlying anatomy, chemistry and physiology underlying OCD. This repetitive, ritualistic illness – while sometimes used among laypeople to describe someone who is uptight – is actually a serious and often devastating behavioral illness that can paralyze children and their families.

In children with OCD, the brain’s arousal center, the anterior cingulate cortex, is ‘hijacked.’ This causes critical brain networks to stop working properly.
Image adapted from Diwadkar VA, Burgess A, Hong E, Rix C, Arnold PD, Hanna GL, Rosenberg DR. Dysfunctional activation and brain network profiles in youth with Obsessive-Compulsive Disorder: A focus on the dorsal anterior cingulate during working memory. Frontiers in Human Neuroscience. 2015; 9: 1-11., CC BY-SA

Through sophisticated, high-field brain imaging techniques – such as fMRI and magnetic resonance spectroscopy – that have become available recently, we can actually measure the child brain to see malfunctioning areas.

We have found, for example, that children 8 to 19 years old with OCD never get the “all clear signal” from a part of the brain called the anterior cingulate cortex. This signal is essential to feeling safe and secure. That’s why, for example, people with OCD may continue checking that the door is locked or repeatedly wash their hands. They have striking brain abnormalities that appear to normalize with effective treatment.

We have also begun a pilot study with a pair of identical twins. One has OCD and the other does not. We found brain abnormalities in the affected twin, but not in the unaffected twin. Further study is clearly warranted, but the results fit the pattern we have found in larger studies of children with OCD before and after treatment as compared to children without OCD.

Exciting brain MRI and genetic findings are also being reported in childhood depression, non-OCD anxiety, bipolar disorder, ADHD and schizophrenia, among others.

Meanwhile, the field of psychiatry continues to grow. For example, new techniques may soon be able to identify children at increased genetic risk for psychiatric illnesses such as bipolar disorder and schizophrenia.

New, more sophisticated brain imaging and genetics technology actually allows doctors and scientists to see what is going on in a child’s brain and genes. For example, by using MRI, our laboratory discovered that the brain chemical glutamate, which serves as the brain’s “light switch,” plays a critical role in childhood OCD.

What a scan means

When I show families their child’s MRI brain scans, they often tell me they are relieved and reassured to “be able to see it.”

Children with mental illness continue to face enormous stigma. Often when they are hospitalized, families are frightened that others may find out. They may hesitate to let schools, employers or coaches know about a child’s mental illness. They often fear that other parents will not want to let their children spend too much time with a child who has been labeled mentally ill. Terms like “psycho” or “going mental” remain part of our everyday language.

The example I like to give is epilepsy. Epilepsy once had all the stigma that mental illness today has. In the Middle Ages, one was considered to be possessed by the devil. Then, more advanced thinking said that people with epilepsy were crazy. Who else would shake all over their body or urinate and defecate on themselves but a crazy person? Many patients with epilepsy were locked in lunatic asylums.

Then in 1924, psychiatrist Hans Berger discovered something called the electroencephalogram (EEG). This showed that epilepsy was caused by electrical abnormalities in the brain. The specific location of these abnormalities dictated not only the diagnosis but the appropriate treatment.

The ConversationThat is the goal of modern biological psychiatry: to unlock the mysteries of the brain’s chemistry, physiology and structure. This can help better diagnose and precisely treat childhood onset mental illness. Knowledge heals, informs and defeats ignorance and stigma every time.

David Rosenberg, Professor, Psychiatry and Neuroscience, Wayne State University

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

Sex versus death: why marriage equality provokes more heated debate than assisted dying

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While fear suppresses talk about dying, marriage equality involves sex.
AAP/Danny Casey

Julian Savulescu, University of Oxford

The Greek philosopher Epicurus wrote:

Death does not concern us, because as long as we exist, death is not here. And when it does come, we no longer exist.

We are in the midst of two great ethical debates: marriage equality and assisted dying. The results of the marriage equality postal survey will be announced on November 15; meanwhile, the Victorian parliament is this week debating a new law to allow doctor-assisted dying in the last year of life.

What is striking is the volume of the respective public debates. Everyone is talking about marriage equality; very few are discussing assisted dying.

Given that the ethics of assisted dying are more complex than marriage equality, and what happens in Victoria is likely to provide a template for other states, why is it receiving so much less attention?

How fear of death affects public debate

Public ethical debates are fuelled by emotion and psychological biases on both sides. In the case of assisted dying, most of us are not like Epicurus: we fear death. We hate talking about it.

Despite the fact that polls show that 73% of Australians favour assisted dying, it is not clear whether the legislation will pass, although the mood seems to be leaning slightly in favour: 40 out of 87 MPs in the Legislative Assembly told the Herald Sun they would vote yes.


Further reading: As Victorian MPs debate assisted dying, it is vital they examine the evidence, not just the rhetoric


So, there should be an enormous impetus to show MPs the level of public support. But it has been rather muted. Perhaps for similar reasons we post photos of weddings on Facebook, but not funerals: both are important, but only one makes good dinner party conversation.

Terror management theory, evolution and social signalling

Our fear of death might even be linked to our love of marriage, according to terror management theory (TMT). Neuroscientist Claudia Aguirre writes:

When we’re faced with the idea of death, people defensively turn to things they believe will shield them from death, literal or otherwise. Thinking about death also motivates people to indiscriminately uphold and defend their cultural world views, whatever those may be.

TMT has been linked to our development of regulation and rituals around sex.

In evolutionary terms, sex is more important than death, which is one of the reasons marriage equality provokes such heated debate.
Shutterstock

So, a fundamental commitment to marriage being between a man and a woman may be more of an immovable foundation on which group membership is based to guard against our shared fear of death than an ethical position that can be defended or rebutted on rational grounds.

While fear suppresses talk about dying, marriage equality involves sex. People are intensely interested in love and sex. And sex has been more important than death in evolutionary terms.

As evolved animals, we were only here to survive long enough to reproduce. Reproduction is evolution’s goal, and so practices around its rituals and norms are hugely important in evolutionary and religious terms.

Religions and societies seek to control reproduction. In the Judeo-Christian tradition, sex was to occur within marriage between one man and one woman. Death at an old age is of much less evolutionary significance.


Further reading: To Christians arguing ‘no’ on marriage equality: the Bible is not decisive


We are social animals, motivated to support our in-group and reject out-group members. Tribalism can help explain our devotion to football teams, for example. We have developed social signalling to show our group which side we are on and maintain trust.

Add to that a status quo bias, and public debates where the topic in question is seen to express something foundational about ourselves can become little more than cheering for our own team.

Anchoring

Anchoring is a psychological bias that means we evaluate how good or bad something is relative to the anchor of existing examples.

In the UK, the 2013 same-sex marriage legislation was fairly uncontroversial. One reason could be that civil partnerships – same-sex marriage in all but name – were created back in 2004. Each step in the UK’s progress towards marriage equality was a short step from the previous state of being.

In contrast, the Australian campaign against same-sex marriage portrays the choice as a paradigm shift in our culture, extending far beyond marriage. Former prime minister Tony Abbott linked the debate to political correctness, gender fluidity and even the date of Australia Day, saying:

This isn’t just about marriage … there are lots and lots of implications here and we’ve got to think them through before we take this big leap into … the dark.

A better approach

For assisted dying to be an appropriate activity for medicine, we should show that death can be an appropriate therapeutic end and in a patient’s best interests. That is, that their life is no longer worth living.

That is an extremely difficult case to prove, and I haven’t seen any good arguments for how to evaluate that. Why wouldn’t we just go on what a competent person says? If a suffering person believes they’re better off dead, they’re probably right.

But here is another way to think about it. The Victorian legislation will provide assistance only to those in the last year of life from a physical illness. They are effectively in the process of dying.

While palliative care may be able to control pain and suffering, it cannot do everything.
Shutterstock

One major objection to the assisted dying bill is that we don’t need it because good palliative care is sufficient. Relief of suffering is very important, and more should be spent on end-of-life planning and palliative care.

But this objection is complicated for several reasons. If palliative care is outstanding, people won’t request assistance in dying. So there is no need to ban it.

More importantly, while palliative care may be able to control pain and suffering, it cannot do everything.

Together with colleagues at Barwon Health and Oxford University, we surveyed 382 people from the general population and 100 attendees at an advance care planning clinic, where people think about and express their values relating to end-of-life care. We didn’t ask them about assisted dying, but we did ask them to rank four factors at the end of life: pain relief, dignity, independence and living as long as possible.

The highest proportion of both groups ranked the relief of pain and suffering as the most important value, followed by maintaining dignity and remaining independent.

Living as long as possible was ranked as most important by the lowest proportion of participants – only 4% of palliative care patients and 2.6% of the general population (30–35% regarded this as either not important or not very important).

People care not only about pain relief, but also about dignity and independence at the end of life. These are much more subjective and less amenable to control by palliative care. So while palliative care can address part of what people care about, it may not be able to address all their values.

Moreover, people can already shorten their lives by more than a year for any medical condition, or no medical condition at all, by refusing to eat and drink by mouth. It takes around ten days to die of thirst. Such people could be given palliative care to relieve their suffering during this period of suicide.

But surely the Victorian law offers a better way to die? As with the palliative care, this kind of death does not provide the dignified death, or the independence, that people value.

As distressing as public debate on heartfelt, emotive issues like assisted dying and marriage equality can be, it is an important collective exercise. Like many other people, I thought the marriage equality survey was a waste of money. But on reflection, this idea maybe misplaced. When the views of one part of the community are deemed politically incorrect and suppressed, they foment, then erupt in a Brexit or a Trump.

Debate is vitally important to democracy. What we should hope is that people engage in these debates with their heads, not their hearts. It will take considerable effort on both sides to overcome the psychological obstacles to finding the most fair and reasonable policy.

As Epicurus also said:

The ConversationThe art of living well and the art of dying well are one.

Julian Savulescu, Uehiro Chair in Practical Ethics, Visiting Professor in Biomedical Ethics, Murdoch Childrens Research Institute and Distinguished Visiting Professor in Law, Melbourne University, University of Oxford

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

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.

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.
shutterstock

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.

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 spiritually speaking, a universe…) My mother first 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.

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.