Human rights for just a few, that’s discrimination. Human rights apply to all human beings.

It has just been the 6th anniversary of an important human rights case, that of Mark and Steven Neary. Steven, who is autistic, was detained in local authority care for over a year before his dad used the Human Rights Act to get him home. RightsInfo has made a powerful short film to mark the […]

via A powerful new human rights film  — UK Human Rights Blog

Abortion

Writing the first edition of my essay “We need to talk about this” – the second edition is in the works – forced me to think about issues I had never thought about before in great depth and I had to leave many of them untouched at the time.

For example, I am a feminist and I have always believed in a woman’s right to abortion. While I was considering how we could regulate the new eugenics, I ran into boundaries. It included having to think about how to fit abortion into the topic. That was a significant hurdle.

I was no longer able to say “of course women should be able to have abortions” – which I had always done in the past – but had to think about why and when they should, regardless of my own personal feelings. Because what I was writing about selecting pre-embryos and fetuses clashed with the general ideas that I had always entertained about abortion but had never examined in detail.

Legislation and protocols can sound very cold to people, but it’s not enough to just state something like “we think this is very very good” or “we think this is very bad”. That wouldn’t work in practice. If you want to make sure legislation is solid and leaves little room for abuse (deliberate misinterpretation), you end up with language that can come across as heartless. But that does not mean that the legislation (or protocol) is heartless or that the people who wrote it are!

It can be difficult to get that across, I have seen in various online comments (on for example the Groningen Protocol). It works the same way for traffic rules or rules for building skyscrapers. The law can’t just say something vague like “drivers should be careful” and “buildings should be safe” and leave it at that.

When Obamacare was introduced, a staunch Republican (and stauncher Libertarian) wrote to me that it was ridiculous that its legislation was taking up more than 2,000 pages or something like that. (Who would ever read that?)

I replied to him that I knew a jurist who works in precisely that area in the Netherlands and explained what that kind of legislation has to include. Fortunately, he listened to that explanation.

Unfortunately, I have found that even people who see themselves as the voice of reason (and sometimes as having absolute wisdom, too) aren’t always willing to listen to what someone “from the other side” is saying.

A certain brand of callousness

In my essay “We need to talk about this” I mention that I have on occasion been shocked by a certain brand of callousness that I have seen (too) often in Britain (both in the media and in real life). Here is one example of what I mean.

 

You can only justify such occurrences by applying a tweaked form of utilitarian reasoning. One person was suffering, but “wasn’t really harmed” and the number of people who were enjoying what was being done to George Cheese was greater than 1, hence these occurrences “increased overall happiness”.

The fact that utilitarianism was associated with the higher classes may have given this type of reasoning or events an unfortunate aura of “cleverness”. It could also explain why anyone who condemns the sort of things that were being done to George Cheese is seen by some as “naïve” and “not quite with it”.

Utilitarianism also attached little importance to individual persons’ rights. It would have stopped short from, say, stabbing someone like George Cheese as opposed to setting his clothes on fire and stuffing him into the trunk/boot of a car. This is the kind of background, I think, that enabled Simon Wright to say “It did not go too far.”

In reality, abuse targets like George don’t get to LIVE. All they are allowed to do is wait for their natural deaths. George Cheese said “FUCK THAT!” and stood up for himself in the only way he had left.

At least there is an inquest. That’s good.

 

 

The Charlie Gard case

Ouch.

I ran into the story a while ago, and couldn’t find too much information about it back then. However, the parents have just been turned down by the next court and now apparently plan to take the case to the Supreme Court. That’s resulted in more attention for the story, with more background.

Here are two places where you can read more about the case if you’re not familiar with it:
http://www.bbc.co.uk/news/uk-england-london-40047485

https://researchingreform.net/2017/04/12/london-live-interviews-researching-reform-on-charlie-gard/

http://www.bailii.org/cgi-bin/format.cgi?doc=/ew/cases/EWHC/Fam/2017/972.html

In the online discussions, I see something that I also recently mentioned in an essay I wrote and I feel the need to say something about that. (I have also submitted a comment elsewhere.)

Yes, it is true that the British medical profession can be extremely arrogant. As a Dutchwoman who previously lived in the US and is now based in Britain (in Ashya King’s city, I might add), I too feel that the medical profession generally still has that ridiculously old-fashioned god status in Britain. I’ve for instance been ridiculed by an ophthalmologist for asking about possible side effects of a medication, only to find that it did cause serious problems for me. (Thankfully, we have the internet now, which can help us solve such relatively minor problems and bypass physicians who don’t like assisting emancipated patients.) Some people have mentioned Ashya King’s case within this context.

Having said that, Charlie Gard’s case – heart-breaking and difficult – also has a strong element of the opposite. We are now in an era in which doctors are increasingly often perceived as “playing God” when they do NOT do everything in their power to prolong a baby or an adult’s life artificially, no matter how high the cost to the individual in question.

Charlie Gard’s case is not comparable with Ashya King’s case.

Charlie was born with a condition that normally means the infant won’t live very long. I understand that of the few children with his condition, his situation is the worst. Ouch. One can ask whom prolonging Charlie’s life benefits, Charlie or his parents. This will sound incredibly harsh to many and I understand that. It is okay to be very angry with me for that comment.

(I understand, really. I grew up with illnesses and deaths in my very close surroundings; it concerned my mother, one of her sisters and one of her brothers. They died of different kinds of cancer. My mother suffered greatly and for many years, after having been misdiagnosed twice. My youngest sister almost died after she was misdiagnosed when she was 4 or 5. She ended up in critical condition and had to be cooled with ice to keep her fever alone from killing her.) If it hadn’t been for the persistence of my dad, she would never have had the chance to develop into the successful business owner she is today. So, yes, I do know about losing people and wanting to hold on to them.)

On the other hand, allowing Charlie the experimental treatment in the US could yield very important information that may not benefit Charlie but could benefit future infants with mitochondrial DNA depletion syndrome or even other conditions. Could that be worth it? Hard to say.

What would Charlie want? Can you place yourself in Charlie’s situation for even a moment?

Ashya King, by contrast, was a healthy and much older kid who developed a brain tumor. Even with the traditional treatment, Ashya had a fighting chance and treating Ashya as well as possible was certainly going to benefit Ashya (even though there is never a 100% guarantee).

And it has.

One of our problems is that we badly need global regulations for all kinds of medical situations, regulations that people from all sorts of backgrounds all over the world can agree with. The lack of it currently not only causes medical tourism but also the kind of heartbreak we now see in the Charlie Gard case.

If I put myself in the parents’ shoes, I say that most of the hurt and upset for them is currently coming from the legal process. The uncertainty. Even possibly the knowledge that every day they spend in court is one day on which he is not getting the experimental treatment in the US. Unassisted, nature would have already allowed Charlie to cross the rainbow bridge and be at peace and the parents could have had a more normal mourning process.

Is Charlie at peace now? Is he not? How can we know?

It might be possible to avoid this kind of agony if we had much more clarity about what to do to limit harm to such a child as much as possible. Such regulations will have to be a compromise, obviously, and can never avoid heartbreak (but heartbreak is also a normal part of life; life does not come with guarantees and the losses make us cherish what we have).

Conditions like Charlie Gard’s also play a role in the new eugenics, currently particularly in the selection of embryos for IVF procedures, a rapidly growing practice, and soon in the creation of designer babies. It is an incredibly difficult topic that is screaming for attention. So I just wrote a rather provocative essay on it, in a hurry. It is called “We need to talk about this” (the second edition is already in the works) and includes a definition of what constitutes a life not worth living. I have based it on the principle of humanity, namely that every human being has the right to a life in dignity. During the writing of that essay, I grew very depressed a few times, because it is such a hard and dark topic. But we really do need to talk about this, sooner rather than later.

I wish the judges and the parents wisdom and strength and little Charlie lots of eternal sunshine of every possible kind.

 

 

What do you get if you cross George W. Bush, Nigel Farage, Donald Trump and Geert Wilders?

What do you get if you cross George W. Bush, Nigel Farage, Donald Trump and Geert Wilders?

Ehm… an ethics professor at Oxford University???

I have read a few of Julian Savulescu’s papers and they are certainly all very eloquently written. That said, not only did I sense a vague underlying fear as motivation for some views he expressed in a particular article (Procreative Beneficence: Why We Should Select the Best Children), those views scared me.

Then I ran into a report of a talk he gave in Japan in 2011 and it provided some clues. It appears that he is worried that the human species won’t survive much longer and believes that the solution lies in (tinkering with genes and also) ensuring that persons with so-called undesirable genes no longer come to life.

He is not wrong regarding his fears for the human species. Unfortunately, some of his argumentation is flawed and resembles the kind of reasoning that is sometimes presented by, say, the Daily Mail or the Daily Express and then attacked by scientists for being biased, incomplete and unbalanced.

This gives some of his argumentation a strongly irrational tinge and that is why some of his views scare me. He works at the University of Oxford (and was previously at the Royal Children’s Hospital in Melbourne). I expect a lot more from someone in his position and I certainly expect a lot more from academic papers. He has a responsibility to do much better and is surely capable of it.

For example, eradicating the incidence of asthma by eradicating asthmatics – which he proposed in that paper I refer to above – is like making sure that house fires no longer happen by demolishing all housing.

Bad air quality – one of the factors that play a role in asthma – is generally not caused by asthmatics and so eradicating asthmatics won’t improve air quality. As I am sure he knows, other factors include stress, certain medications, and allergies for wheat and other foods. Poverty – living with mold-covered walls and ceilings – is also a major factor. We should address those issues first, also because they are linked to other negatives and would help ameliorate those as well.

I agree with him that we humans face huge challenges, but I believe that there are currently much better ways of tackling them than eugenics. As two examples, I recommend the TED Talks by his learned colleagues Jane McGonigal and Rutger Bregman. The former has very attractive – and very up-to-date – ideas for how we can boost our problem-solving skills and the latter knows how we can lift the IQs of a very large group of people by roughly 14 points and save a lot of money in the process without too much trouble. It would also help make things better for asthmatics. Both are much more elegant scenarios than the scenario of eugenics (by any name).

His Procreative Beneficence article includes a table that lists 13 traits under the heading “behavioural genetics”:

I feel it is best to refrain from comment on that table. It speaks for itself.

Next, I wanted to take a look at the book he and his Swedish colleague Ingmar Persson published in 2012 (Unfit for the Future) and my jaw dropped when I read the summaries on the Oxford Scholarship site. Literally.

In it, they use the phrase “weapons of mass destruction” many times. They list “weapons of mass destruction” under the heading “catastrophic misuse of science” and combine it with keywords like “xenophobia” and “multiculturalism” but also “biological weapons,” “nuclear weapons” and “terrorism”. They write that “the multiculturalism of current liberal democracies make it likely that they will contain groups of people hostile to their ideology.”

They appear to think that “it might be possible for a well-organized terrorist group” “or even single individuals” to construct “weapons of mass destruction” and that this should be addressed by administering the hormone oxytocin, which they consider a drug. To me, this sounds like a combination of George W. Bush, Nigel Farage, classic Donald Trump and Geert Wilders speaking. I was astonished.

Persson and Savulescu put the cherry on the icing by the following two sentences:

“However, it is admitted that research into biomedical agents of moral enhancement is still in its infancy and that it is too early to judge its fruitfulness. There is also the general difficulty that means of moral enhancement have to be administered by morally imperfect people.”

Will this be developed into the next James Bond film, I wonder?

The book summary starts with the following sentence: “It is easier for us to harm each other than to benefit each other, e.g. easier to kill than to save a life”. That statement does not sound particularly healthy to me and I wonder what a psychologist or psychiatrist might make of it. I see people save other people’s lives on a daily basis and I don’t live that far from Oxford so my environment can’t be that different from Savulescu’s, though there is likely more poverty in my neck of the woods than in and around Oxford. People saving other people’s lives may happen more frequently than he and Persson think, even in countries like Syria.

Thankfully, I found some common ground in half of the chapters. Our planet is in trouble. I agree with that. But is it true that families with babies – young parents tend to produce a lot of oxytocin – are better for the environment than the rest of us?

What would happen if you throw in a bit of extra testosterone, another hormone that seems to be taking the world by storm as a bioenhancer at the moment? Testosterone is linked to aggression, after all. Would that cancel out the effect of the oxytocin? And for women, a bit of progesterone may be better than oxytocin but then again, estrogen is better for memory even though it tends to make women cranky. Less sweet. Testosterone on the other hand generally is not that good for memory.

Coffee is, though, particularly for people at more advanced ages and coffee has a number of other benefits. It is very good for the liver, even helps diseased livers recover, for instance, and it is a mild bronchodilator that works for about four hours after administration.

What does oxytocin do for memory? And, might it cause many women to lactate?

And could the unbridled practice of eugenics negatively influence oxytocin production in parents? Would it pitch hubris (such a powerful word!) and consumerism versus humility and gratitude? Could it push society toward psychopathy on the human diversity spectrum that ranges from extreme altruism to psychopathy?

I don’t think there is a one-pill-fits-all solution for the problems the world faces, with or without administration by morally imperfect people.

I did something similar. I went the other way and wrote a deliberately provocative essay – “We need to talk about this” – that highlights some of the downsides of eugenics. (The booklet has its limitations; I am working on a second edition.) I am just an ordinary educated citizen who believes in embracing (bio)diversity – also because there are good reasons for it – and in inclusive solidarity. I am not a professor at Oxford University. Maybe that’s a good thing.

I have also communicated the above to professor Savulescu. (I don’t expect to hear back from him.)

PS
I would like to add a few words about what the BBC posted on its website on 24 May. Attacks like the one in Manchester – note that this does not involve the biological or nuclear weapons of mass destruction Persson and Savulescu are worried about – take expertise that is difficult to come by and require a lot of planning and preparation, which increases the chance that agencies like MI5 will find out about such plans long before they can be executed, the BBC wrote. The type of individual required– not the type that Persson and Savulescu are concerned about, as that would be much rarer – is “very rare” according to the BBC.