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.

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.