Trump: An analysis

Several people have said that he has a narcissistic personality disorder. Donald Trump, that is. Some think it’s the “malignant” variety.

I am no expert on the topic, but I have had reasons to look into this condition in recent years and think about it. I also took a few (simple online) tests to see if I might have a trace of that disorder myself, just in case. (No.)

Not all narcissists are bad people and some work very hard at being the best people they can be. Some are actually quite nice people, underneath the disorder. You certainly can’t blame them for having this disorder. It is not the result of a choice they made, but caused by genetics or by extreme neglect or excessive spoiling in early childhood. Not all variants of the disorder are severe.

Narcissists have an internal disconnect. This internal disconnect seems to work somewhat as follows.

There is one side that comes across as extreme confidence (arrogance). There is an inflated self-image filled with superlatives. This is what can make them so successful, certainly if they also happen to be very talented in one or more areas. This is the Trump “train” that overrides everybody else’s concerns.

The other side of them is extremely insecure and needs to be reassured all the time.

I suspect that these two sides reinforce each other, somehow, or support each other. The disconnect is not complete, but the disconnect does mean that narcissists have a very limited understanding of themselves.

Some also seem to have an extreme focus on the here and now. I think we see that with Trump when he says things that contradict what he said the day or week before. The things he says often make little sense to the rest of us, but they make sense to him in that particular moment.

Because he’s wealthy, he was able to do or be all of this for a long time. He could tell his staff that the moon is made of lemonade and they’d have to agree with him. Much of his business success is probably due to the people around him, though he’s likely quite good at cooking up business strategies. Good at numbers.

I think that when Donald Trump said he saw huge masses during his inauguration, he was not lying to us. He is not blind, and his brain, his insecure side undoubtedly noted how few people there were. He cannot not have noticed that. It’s physically impossible (unless someone fed him tons of fake news, with images from a different inauguration – and that idea is way too far-fetched, way too crazy, to be true).

As that did not gel with the other side of him, his inflated self-image, the only solution for him was to tell himself that the crowds were immense.

I think we’ve also seen the insecure side of him, namely when he we saw him look over, with suspicion, to check if his wife was really voting for him.

You see it in the above image as well. He has the need to lecture us, explain things to us and to show us how intelligent and well-informed he is, but out comes this childlike gibberish. (I checked it. He really said that, yes.)

Our tendency is to expect this man to behave and function like the rest of us. We want to tell him how stupid he is that he cannot see the things that are right in front of him, we cannot believe that he seems to be telling us lie after lie after lie. They are such blatant lies. however, that they clearly have nothing to do with intellect or normal logical reasoning.

These are the lies he tells himself, often lies in which he has to believe to preserve his own self-image, and they are also extremely spur-of-the-moment, childlike actions and utterances to do with that short focus.

He surrounds himself with people who support that image of himself and as soon as a person ticks him off, that person is likely pushed “out” soon (but about that I am not entirely sure). His Twitter feed follows only a few accounts that support his self-image.

It’s incredibly sad that the American electoral system is so flawed that Donald Trump was able to get into the White House. Unfortunately, remedying this severe flaw would require each individual state to carry out an amendment to be able to implement the required changes, so I understand. I haven’t heard any news that indicates that there are plans in that direction.

Without going into more specifics – speculation – about narcissistic personality disorder, I do think that the fact that he has this disorder means that he can be made to step down.

He does not enjoy being president. Different rules apply now that he’s in the Oval Office relative to when he was merely in business and on TV. He thought he would be an absolute ruler and found out the hard way that now there are courts and judges and many others to whom he can’t instantly say “you’re fired!” when they don’t do what he wants.

He is also getting a lot of negative feedback that his boisterous side will deny categorically, but that his brain cannot help noticing and feeds into his insecure side.

I think that if we flood him massively with the message to step down – although I am not sure if that should be one consistent message or just massive negative feedback – he will become so uncomfortable that he will have to do something “magnanimous” and “heroic” to preserve his self-image.

He may come up with severe illness for his wife or one of his children. Some factory deal that supposedly will bring millions of jobs to a city or state won’t do it because he is already claiming that kind of thing and it would not offer him a “safe retreat”.

I really think we need to flood him massively and incessantly with negative feedback he cannot miss, that his senses cannot miss. Banners all over cities, newspapers plastered with big headlines, chants wherever he goes. No letters, because his aides will open those.

Step down from the US presidency, Donald Trump.

The threat of impeachment is helping. He won’t – can’t – let it get to that point. The idea that a committee may be formed to assess his mental health on a monthly basis probably has not escaped him either. The fact that right now, he chooses to go on a CAMPAIGN RALLY – WTF? – and won’t attend the Kennedy Center Honors event seems to indicate that he feels threatened and is only focusing on preserving his self-image. He wants to be applauded, have the masses around him (and if he can cause some trouble in the process, it will make him feel better, because he will likely feel that as “punishment” of those who don’t support him).

When he was not in office yet, he spoke in support of Joe Arpaio and that was one of those many instances in which he made clear that the main thing that counts for Donald Trump is whether someone supports him or not, believes in him or not. And all of that is crumbling hard all around him.

Thing is… if he does not step down, then someone somewhere will be unable to keep his hands in his pockets and do what that Missouri senator said she hoped would happen. And then we might have a sudden eruption of pockets of trouble that could be unmanageable and unpredictable.

Another positive effect would be that those who feel bolstered by his presidency (such as perhaps Theresa May, Marine LePen, Geert Wilders and Nigel Farage) will also lose some ground.

For the record: This post is not about how to deal with narcissists. This post is about how to deal with Donald Trump, a man who is doing a heck of a lot of damage from the Oval Office and who is in a position to do a heck of a lot more damage.

Of course, it is quite possible that all of the above is complete hogwash. Any better solutions?

 

 

More and more people are joining the chant. Resign! Now Al Gore is saying it too. (No, I didn’t start it, LOL.)

The effects of fascism: you decide

Yesterday, I was in the middle of posting four tweets about Donald Trump when the news about Barcelona came in.

A U.S. president who had just said that the victims of a similar violent occurrence in the U.S. were as much to blame for what happened as the perpetrators is not in a position to then make a statement in support of the victims in Barcelona and still have any credibility. He has none left, completely lost face a long time ago. So he is no longer able to function. Period.

So I flooded Twitter with tweets, asking people to flood Trump’s timeline with demands to step down (also with the aim of working on his psyche, frankly, because the only way he can still retain a little bit of his self-image is probably by stepping down).

Trump was not aware of the Barcelona attack yet at that point. Twitter thought I was a computer sending out automated tweets – do I really type that fast? – and locked my account, but sent me a voice code so that I could unlock it again.

The United States have a violent cartoon character as acting president.

(Unfortunately, he is also rich. Money is power. Money gets to say and do what it wants and get away wit it. No, money is not evil. Just look at what Bill and Melinda Gates do with theirs, and there are plenty of other examples.)

When Trump’s period in office started, I though that he was either going to run himself into the ground or be assassinated. I didn’t say the latter out loud. Yesterday, someone here in town said the same thing. He said that all it took was, for example, a marine or ex-marine with some kind of long-distance rifle. Trump is hurting too many people, driving too many toward the point at which someone will snap.

This morning, I saw the Washington Post report that a Missouri senator in a moment of frustration had posted, on Facebook, that she hoped Trump would be assassinated. No, that is not appropriate behavior from a senator.  No, I don’t know this senator, but I do know that she is black and that “the Trump train” denies too many people she represents their humanity.

I can understand that it is getting harder and harder for many people to keep their fists in their pockets. How would you respond if someone kept spitting into your face?

Here is one of the comments on her Facebook page.

https://www.facebook.com/plugins/comment_embed.php?href=https%3A%2F%2Fwww.facebook.com%2Fmaria.chappellenadal%2Fposts%2F10155667265648980%3Fcomment_id%3D451523865232629&include_parent=false

It is by someone called “Joseph George” (a troll?) and says (just in case the post disappears, as my screen capture does not seem to be working): “This is Obama’s actual legacy: a foul smelling rodent class who vandalizes public property and commits acts of violence against whites. #PresidentDonaldJTrump it is time for action. Declare #blacklivesmatter scum a domestic terrorist organization, arrest and prosecute its leaders.

About a century ago, we had a very bad man in Europe who ended up killing millions and millions and millions of people. Simply because they were from certain countries. Or because they were Roma gypsies, because they were gay or lesbian, disabled, or Jewish.

We let him.

Years later, many people said that they had not known about what had been going on.

We no longer have that excuse. We do know what is going on. No, we can’t and shouldn’t assassinate Donald Trump, but we cannot stand by and watch in silence either. (Thankfully, many Americans seem to be hard at work, using the law to find ways to stop the “Trump train”.)

This is an image I saw in a Utah newspaper, in an article about the “Trump train” cartoons (here).

And this is the image Trump tweeted the other day and then deleted. (I first thought it had actually been made for him, by his people, but apparently, that was not the case.)

Notice how the resistance of the CNN reporter is actually about to derail the “Trump train”?

My grandmother lived through two world wars. She was born at the end of the 19th century and must have been 18 or 19 when World War I started. She was highly politically engaged, always on top of the news, until she passed away in her 90s. I am starting to understand a lot more about that.

I reported and blocked the Twitter accounts of real Donald Trump and of Columbia Bugle. A useless act, I know. But I can’t stand by, watch what happens and later claim that I had no idea what was going on and that that’s why I stayed silent.

(Here in Britain, we have the likes of Nigel Farage and Theresa May and lots of media spitting out Trump’s message, sometimes packaged a little bit smarter, but more times than we should still be comfortable with, or in any case, many more times than I am comfortable with and I am so uncomfortable with it that I am even uncomfortable saying this out loud.)

But I can speak out against what Donald Trump is doing. I wish I could do a lot more, but I am just a lone soul yelling into the desert, it often feels like.

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 I heard last week

I had a conversation with a gentleman who used to work at a very large company. (I won’t indicate what kind of company it was and I certainly won’t say which one it was.)

 

That company, he told me, used to cooperate a lot with a similar large American company. (I won’t say which one that was either.)

At those companies, they used to call their counterparts at the other company instantly when one of them made an exciting discovery. They would ask each other to come over, so that they could teach each other, and share.

Every once in a while, they’d get together and have a conversation that went somewhat like this:

“We gave you that, and well, that’s worth about 50 million. But you gave us this, and that’s also worth about 50 million. You owe us six pence.”

And then they went and had lunch together.

What put a stop to it?

Competitiveness.

Cooperation

What global change and allergies have to do with each other

Some people are angry when TV/radio stations allow people in their programs who don’t believe in anthropogenic climate change. I don’t see what is wrong about listening to what other people think and having conversations with them and I said that on Twitter (while I was on the road). That does not make me Donald Trump’s favorite cousin.

Green roof, part of a hotel in Utrecht, the Netherlands

We don’t have merely climate change. We have GLOBAL change.

Among other things, we appear to be at the brink of the 6th mass extinction, with the difference that this one is entirely caused by the activities of  the human species, including how we see and treat other species. It also indicates that our habitat is likely becoming unsuitable for ourselves too.

I think it’s a stupid excuse to blame people like Donald Trump and some person called Watson Lawson, who apparently was on TV/radio in some program, for what is going on and for what other people are doing.

Companies in the United States have a CHOICE, for example. They can stick to emission targets no matter what Donald Trump says. it’s a matter of taking personal responsibility. They can even make industry-wide decisions, no matter what Donald Trump says.

I don’t know who this Watson Lawson person is, but I can understand why some people don’t want to believe in global change and refuse to believe that it is mostly caused by us. First of all, the idea is scary as hell (because it threatens our own existence as a species). So the idea that it is not happening is much more likeable. So it isn’t stupid for people to stick to such a belief. It means they’re human.

Secondly, because science is big business – requiring and using but also generating loads of money – it is easy for some people to believe that scientists sometimes say things merely to get more money. it’s happened! More than once.

Also, science has fashion trends just like everything else. I remember when more and more people started asking money for CO2-related research. Suddenly, doing that was hot.

Some scientists (Bob Berner, for instance) had already been doing that for a long time but until then, not a lot of attention had been paid to them. Others were (also) experts in topics like ocean pH (Bob Byrne, for instance). CO2 and pH have a heck of a lot to do with each other.

It used to be quite hard to get earth and ocean sciences into Science or Nature. These sciences weren’t deemed of interest to a larger audience. They were for and about people who studied fossils or looked at seals and fishes. Duh.

Fossils writing about fossils for other fossils. Fossils. That was the image a lot of people had about the earth (including ocean) sciences. Stuffy people. (Okay, there were also some who thought “oil and gas” and some who thought “shiny  minerals” and “shells”.)

Suddenly, CO2 (carbon) was where the money was so CO2 was what lots of people wanted to work on.

That does not mean that it’s useless research. Far from it. Neither does it mean that researching something else suddenly became stupid. I have had all sorts of people tell me that earth science was a stupid thing to be interested in. It was never a “sexy” science – until the world started to become aware of global change.

Many other disciplines have since jumped on board of the train, often reinventing wheels that earth scientists had already not only invented but developed. Earth science also had the undeserved stigma of not having any modellers, people able to do complicated calculations. Those other disciplines had no idea how much computer power 3D structural geology modelling took or how much math there was in hydrology or how much thermodynamics in rocks and minerals.

(Not that I mind that those other disciplines have joined because they contribute their own insights.)

It takes time for new discoveries /ideas to grab hold.

There was a time – none of us were around back then – when some dudes started suggesting that the earth wasn’t flat, but round. They met with an incredible amount of resistance! They were banned, vilified, crucified, prosecuted. It was heresy! The earth was flat and that was that.

The notion that the earth isn’t flat has taken a very long time to sink in. I am sure there are still plenty of people who are unable to grasp that we are living on a large sphere. That doesn’t make them evil people. It doesn’t necessarily make them stupid people either.

It makes them HUMAN.

I have other examples. I am sure that the ones who think I am stupid when I say it isn’t stupid to talk with and listen to people who disagree on important issues occasionally get very drunk or pig out on food and then regret it deeply the next day.

They KNOW that they shouldn’t do it. They KNOW that they will get sick. They KNOW that they will regret it the next day. Yet, they still go ahead in spite of knowing all that. Why?

Because they are HUMAN.

To be human means to be fallible. None of us are perfect and none of us are 100% right about everything.

I have a personal example too. I love pasta but I’ve recently discovered that I seem to be allergic to wheat (not gluten-intolerant; that’s something else). So I get “punished” by my body for eating pasta. It’s taking me longer to stay away from wheat than is logical.

it’s like the dialogue with someone who does not believe in human-made climate change. My body says to me: “Do not eat pasta”. I keep responding: “But I like pasta!” I have the evidence, but I like pasta and it’s taking me a while to stop liking pasta and coming around to the idea that maybe I should stop liking pasta. The idea of not liking pasta any longer just seems … odd? My body says: “Eat gnocchi instead!” But I still haven’t fully made the switch.

I don’t know exactly how this works.

All I know is that it makes me HUMAN.

Why cut off communication simply because you don’t agree with someone about a topic as important as this? It is usually not a crime to disagree with someone.

I may be seeing something similar with nanoparticles. There may be people who don’t like it when I point out that we don’t have technologies yet for removing them from waste streams. Some may be thinking that if they don’t reply to me, I will go away, even though we literally used to sit at the same table in the past.

Are they thinking that if they ignore the fact that we don’t have technologies yet for removing them from waste streams long enough, it will go away? I am not saying that this will lead “to the end of the world”, but it does seem pretty stupid to me, with all that we’ve learned from all the mistakes we’ve made in the past, to keep barging ahead with new technologies before we’ve fully figured them out and mastered them.

Yes, progress is cool. Very! I get that! And Donald Trump digs coal. Really digging something isn’t always enough justification for doing it.

I don’t know who this Watson Lawson person is, but I remember a British guy telling me, years ago, that he thought Britain was so small that nothing the British did or didn’t do would make a difference to the planet.

When all the people in the world say “I only have one dollar, so I can’t contribute much, so I won’t contribute” you end up with nothing yet when (almost) all people say “I only have one dollar, so it’s not much but that’s what I can contribute” you get a fortune!

If two or three people want to keep their dollar note to themselves, oh well. I don’t mind hearing what they did with their dollar. Because I know that what I did with my dollar.

But until it’s only two or three people, stopping the conversation does not seem a good idea to me.

In no way does any of the above translate in me saying “Go ahead, trash the planet.”

Do I wish I had much better answers? Hell, yeah! I wish I had a magic wand and could fix the entire planet with one graceful wave of my wand-holding hand. But I can’t. And I feel that the way I live, including all the plastic waste I produce, is horrible, just horrible. And it makes me despair at times.

Instead of buying new shelving, I paint and stack and sometimes first fix small tables I find thrown away along the streets. My microwave is a discard from someone else’s kitchen renovation. It stands on two small cardboard boxes. I catch the cold water when I run a shower till the water gets warm. But it’s too damn little.

Read up on people like Rachel Carson, too.

PS
Sending me a stupid spoofed e-mail about a non-existing job in Germany doesn’t do anything for the planet either, whoever…

PPS
If you don’t get my stupid analogies, reader, that’s okay.

PPPS
No, it is not embarrassing or bad to have dissenting views around the table and have a dialogue. it’s what grown-ups do in a democracy. (It’s also the sort of thing people like Donald Trump don’t do.)

 

 

 

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

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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

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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?
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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.
EPA/Will Oliver

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.
© Lionsgate

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.

The tubs! They’re coming!

Years ago, I had the great pleasure of attending a talk by J. Craig Venter. And as I sat in the audience, looked at the images of metabolic pathways he was displaying on the screen, I suddenly realized I was looking at electronic circuits. Undoubtedly, many others had already seen that before me.

Next I read that some microorganisms use extracellular electron transport, on the sea floor.

And it started to look, to me, like the future may contain tubs of bacteria in our attics or basement spaces. To generate energy for our homes, I mean.

Now that’s happening. That research is underway (methane-producing bioelectrochemical systems, for instance).

I can’t wait to see how this is going to work out in practice.

You can cut the power losses currently sustained during transport to homes, factories and other facilities, but keeping the things running has to be very easy, too. We would also have much fewer power lines that way, which would probably save a bird life or two and the occasional hot air balloon. And it would likely result in much less pollution as is currently still associated with old-fashioned power generation.

 

 

More recommended reading

These are business books that contain a few life lessons as well. The story about RJR Nabisco is a fast-paced account – it’s been called a thriller – about business and banking practices (junk bonds and whatnots) and of course a portrayal of Ross Johnson and others. (It’s not for everyone, and not for every moment because it requires enough time.)

The book about Greggs gives you the inside view of how Greggs came about and grew into what it is today. It’s a good read and may change how you think of Greggs, the big chain it is today that started as a mom & pop undertaking not unlike my own parents’.

Hilary Devey’s Bold as Brass is suitable for everyone – unless you happen to be a misogynist. It’s a touching book, showing you how Hilary grew up in Britain, the many personal and professional challenges she had to overcome and how she developed Pall-Ex. Throughout her life, Hilary climbed many steep cliffs and was pushed off a few too.

  1. Barbarians At The Gate
  2. Bread: The Story of Greggs
  3. Bold As Brass

Unbleached, recycled and 100% biodegradable toilet paper

You’d think it’d be easy to find…

Amazon has it. Unbleached, recycled, biodegradable toilet paper.

The packaging is compostable, too. Made from potato starch.

Ecoleaf, from Suma. Ecoleaf Toilet Tissue 9 Rolls (Pack of 5, Total 45 Rolls)

And while you’re ordering this… why not get the paper towels too?

Ecoleaf Three Play Kitchen Towel (Pack of 12)

Effective city pigeon management

Traditional pest control companies like spreading persistent myths that help keep them in business. Thankfully, humane wildlife deterrence practices – which are much more effective – are slowly gaining traction. Take pigeons.

They’re highly intelligent animals which we took from their native habitats in foreign countries – sea cliffs – and introduced all over the world. I didn’t know that until nearly two years ago. When it comes to pigeons, there seem to be three groups of people: People who hate them, people who love them and people who are indifferent to them.

I used to be in that third category. In the past, I hardly paid any attention to the critters.

If you haven’t seen it yet, watch this documentary:

Deterring pigeons the traditional way is expensive. That’s partly because it works against the intelligence of the animals instead of working with it. Birds have been on the planet much longer than humans – since 150 million years ago, roughly, whereas our oldest ancestors such as Orrorin tugenensis appeared only around 6 million years ago. So birds have built up a vast collective knowledge that we still lack.

Several cities, including Paris and Nottingham, successfully work with pigeons instead of against them. It results in healthier birds and makes – if you want that – controlling pigeon populations much easier (through the use of dummy eggs).

In city parks and on the rooftops of flat buildings, you can provide pigeon roosting, nesting and feeding structures – modern dovecotes – that are so attractive to pigeons – the former rock doves – that they’ll select them over the inferior spots where we humans usually don’t want pigeons.

Such structures can be made from recycled plastic, which is maintenance-free, non-toxic and available in many shapes and colours. You can use them educational facilities for the public too, connect them with their surroundings in a positive and meaningful way that can be highly inspirational.

It makes sense. Would you rather live in a shack that exposes you to the elements from almost all sides or in a nice cosy environment that feels like home?

PS
I’d be very happy to assist any party (city council, park owner, owner of large building with flat roof) who wishes to apply this.

Northern Ireland abortion refugees: Supreme Court — UK Human Rights Blog

R (o.t.a A and B) v. Department of Health [2017] UKSC 41, 14 June 2017 – judgment here. Sometimes The Law comes to the rescue. And by this I do not mean constitutional law versus populism or the rule of law versus raw-knuckled fighting. It just happens that, occasionally, litigation drawn from ordinary life encapsulates more political […]

via Northern Ireland abortion refugees: Supreme Court — UK Human Rights Blog

Foreign criminals’ deportation scheme ruled unlawful — UK Human Rights Blog

R (Kiarie) v Secretary of State for the Home Department; R (Byndloss) v Secretary of State for the Home Department [2017] UKSC 42 In a nutshell The Government’s flagship scheme to deport foreign criminals first and hear their appeals later was ruled by the Supreme Court to be incompatible with the appellants’ right to respect for […]

via Foreign criminals’ deportation scheme ruled unlawful — UK Human Rights Blog

Five books about Britain

I haven’t read the fifth one yet, but take for granted that it’s highly informative. The first one is pretty heavy reading, more suitable to browse and read when anything catches your eye about how the tea tradition came about for instance or that alcohol used to be seen as good sustenance for hard-working people. Do that often and you’ll learn a few things you didn’t know yet.

The other four are much easier reads.

The Making of the English Working Class (Penguin Modern Classics)

Rich Britain

The Making of Modern Britain

SHOPPED: The Shocking Power of British Supermarkets

A History of Modern Britain