This morning, Michael Cook’s newsletter BioEdge pointed out an assessment by Catalina Devandas-Aguilar, Special Rapporteur on the rights of persons with disabilities at the United Nations.
Here is that article:
And here is the report (PDF) by the Special Rapporteur:
Here it is as a Word file:
I haven’t read her report yet, but her views appear to overlap with mine.
I am currently watching “When They See Us” on Netflix (which I signed up for for a month and which will expire in a few days and I won’t renew it). It is based on real events and contains some vintage Trump. It is about bias and how it can ruin people’s lives.
This morning, I signed up for an online seminar to do with “Disability, Health, Law, and Bioethics”.
Triage and Covid-19. How can you be as fair as possible? By applying non-discrimination. By being as random as possible.
Just like it is not fair to rule against pregnant women because they require more care, it is not fair to rule against people with disabilities and other health challenges in addition to Covid-19.
Unless it is on purely medical grounds.
What do I mean by the latter? An extreme example is that there is no point in treating a dead person for Covid-19. The only rule would have to be whether a treatment would make sense, medically speaking. That’s
likely easy enough to determine is still much easier to type than to do. (I have to define this.)
That a situation might be more complicated should not play a role.
If you were to apply such a biased rule with regard to disabled people, you would also have to apply that rule with regard to pregnant women. (Otherwise you are clearly discriminating against disabled people. That would even be illegal, wouldn’t it?)
But there is not enough staff and there are not enough mechanical ventilators.
So what do you do?
First come, first served. It is the only thing that makes sense.
Because it is more or less random.
You could argue that this would disadvantage the person whose spouse’s car broke down on the way to the hospital. Socioeconomic circumstances are a great discriminator, unfortunately.
Then I thought about it some more.
Well-to-do people generally go to – have access to – different hospitals and health-care providers.
And when I think about disabled people being at a disadvantage because they may for example take more time to get into a car, well, they also tend to have people around them who can assist, even now (I should damn well hope so!), while, say, the dad with two kids also has to manage the kids and get his seriously ill wife into the car.
So that probably more or less evened out.
If an ambulance is called, the process is the same regardless of who the patient is (or damn well should be).
There is the factor of distance to a hospital, but you could get stuck behind an accident in traffic a block from the hospital or have very light traffic from further away. That’s likely more or less random.
Plus, in most places, traffic is light right now.
Seems to me that “first come, first served” and then, while in hospital, those who require a ventilator first get one first.
Nobody should be taken off a vent purely to make way for someone else.
Also, because taking someone off a vent would have meant that the effort spent on the person who gets taken off the ventilator would likely go to waste.
That would not be an efficient use of resources.
(I know that having been on a vent for a while can help a person, but he or she should only be taken off the vent for medical reasons that only have to do with the person in question.)
The only fair way to triage people is severity of complaints, randomly. Skin color or disability or nationality or hair color and even age should have nothing to do with it.
I feel some protest in me when I think about the age factor. That comes from some bias in me.
Shouldn’t a 75-year-old make way for a 36-year-old if they have the same severity of complaints?
I notice that bias, with interest and surprise, and then I override it.
No. That would be discrimination.
And that would not be fair.
(If the older person in question makes that choice and states that he or she does not want the ventilator and states that it should go to someone else, that’s a different matter.)
Severity of complaints and “first come, first served” should be the only principles to base triage on.
I see no other way to keep triage fair.
But abuse the women?
This morning, I responded to an action call from PETA regarding an organization that wants to support polar bears but does so by selling down coats with fur collars, among other things. Abuse of non-human animals lies at the basis of both the down and the fur.
Just now, I received something from OpenDemocracy in my inbox, about its apparently still ongoing struggle with Save the Children concerning this:
I never expected to write the above words as I don’t particularly hold Tory sympathies, but The Guardian did such a stupid disappointing mud-slinging job with this article that I feel I have no choice but to speak up.
First of all, Cummings was thinking out loud. More people should do that as it’s very useful and it’s impossible to have good ideas if you don’t allow yourself to have bad ideas as well. He’d been to an event, in 2014, and he rambled on about what he had heard and what he thought. There is nothing wrong with that per se.
People object to (talking about) “designer babies” but nobody defines it.
I define a designer baby as any baby that is chosen over any other baby or embryo or zygote that would have been viable and would have been able to live into adulthood.
We’ve been making designer babies for decades!
In some countries, people with Down syndrome no longer occur because they’ve been eradicated from the population while they become city councillors and get degrees in other countries.
We used to lock people up and deprive them of normal life experiences because they were different (and we still do, in fact, also in the UK). That kind of treatment would hold anyone back.
“Treat people as if they were what they should be, and you help them become what they are capable of becoming,” Goethe is supposed to have said or, more likely, written a long time ago. Hold someone back and you condemn the person to a life of limitations.
We’ve also seen this happen for women. One of the two founders of the British-born philosophy of utilitarianism considered women “disabled” by society.
Not that long ago, women were not allowed to go to university and not allowed to do many other things, such as have a bank account, own property or run a business.
In March 2017, expert Wendy Savage (a gynaecologist and professor at Cambridge University) allegedly stated in an interview with the Daily Mail that a pregnant woman should always be told the sex of the fetus and should be allowed to abort the fetus if she does not like the baby’s sex.
That too is about designer babies, about picking the pink handbag, not the blue one.
The British celeb who flew to Cyprus because she could pick her baby’s sex (gender) there and was not allowed to do that in the UK, she wanted a designer baby on the basis of her mistaken belief that sex is an either/or switch.
There are several countries in the world in which male children are currently preferably allowed to come into the world at the expense of female children and it’s already changing these countries’ populations too. (That is how we know it is happening.)
Back to Cummings.
At one point in that blog post, he wrote very clearly that he did not have the required knowledge to be able to assess some of what he was writing about:
“There is a great deal of Hsu’s paper – and the subject of IQ and heritability generally – that I do not have the mathematical skills to understand.”
He wrote the word “egg” when he clearly meant “zygote” or “embryo”, and he did not mention that IQ is a relative measure.
But he did mention “junk DNA” which was once mistakenly believed to be just that. Useless junk.
And he also wrote:
“If the poor cannot do the same, then the rich could quickly embed advantages and society could become not only more unequal but also based on biological classes. One response is that if this sort of thing does become possible, then a national health system should fund everybody to do this. (I.e. It would not mandate such a process but it would give everybody a choice of whether to make use of it.)”
He did write:
“The latter will rightly make people deeply worried, given our history, and clearly require extremely serious public debate. One of the reasons I wrote my essay was to try to stimulate such debate on the biggest – and potentially most dangerous – scientific issues. By largely ignoring such issues, Westminster, Whitehall, and the political media are wasting the time we have to discuss them so technological breakthroughs will be unnecessarily shocking when they come.”
I am sure that there is a lot about Cummings’ thinking that I don’t agree with, but neither am I pleased with this childish article in The Guardian.
All over the world, bioethicists are talking about these kinds of topics and you can’t do that effectively if you don’t consider all the angles.
The old eugenics is still continuing. The new eugenics has been with us for a while but is really accelerating now with CRISPR.
I participated in an EDX course by Harvard Law School professor Glenn Cohen who also heads the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, in which we all (about 200 of us) thought hard about these difficult matters.
I have a course on Udemy in which I also challenge people to come up with positive effects of doing something as well as negative effects, in terms of the new eugenics.
If you want an example of this kind of thinking exercise, then consider that eradicating all women from society would eradicate menstrual pain and the majority of breast cancers whereas others might say that women are defective humans anyway, hence that society doesn’t need women and if you couple the latter with continued technological progress, which would make even the biological requirement for having women drop away, you can see a world without women in the future.
If you find this upsetting, then maybe you should remind yourself that we have had no problem applying the same kind of logic with regard to for example people with Down syndrome.
We need to talk about this because we are all biased by definition and unless we are all willing to ponder and discuss these very difficult topics and from all possible angles and reach a consensus, a handful of highly biased people will make up our minds for us.
That could be people like Julian Savulescu at the Oxford Uehiro Centre for Practical Ethics, whose ideas may even be more extreme than those of Cummings (which sadly sometimes obscures the fact that Savulescu also occasionally has brilliant ideas that are much more in line with Michael Sandel’s take on these issues).
It’s why I wrote a book about this stuff. Not because I have all the answers but because I don’t.
Instead of criticizing Cummings over this post, people should follow the example of Cummings and start thinking about this stuff and weighing in.
NOTE: When I say that we need to reach a global consensus regarding the new eugenics, I don’t mean “this month” or even “this year, or decade” but am thinking longer term.
Dillan is a bear who many others and I have been sending e-mails and signing petitions about. It finally worked.
More animals need to be freed from the Union County Sportsmen’s Club in Millmont, PA and I’ve tried to call the facility a few times, but couldn’t get through. I’ve sent e-mails about it and I can’t rule out that I may have missed an update on the other animals, that they’ve been released to a sanctuary too. I sure hope so!
This is Dillan now:
If you know me well, you know that I am not too keen on companies like Amazon tracking and recording every minute of our lives and now adding facial recognition software to that arsenal, wanting to become our bank, our doctor, our police and our insurance company, on top of selling us food, home security and anything else we can think of.
I am even more opposed to the lack of ethics displayed in the ruthless operation of Facebook (read this for details) and I am not too happy with Google and YouTube either.
Yesterday, however, while I attended a webinar on the use of AI in the medical practice, I had to admit that if you were able to track everyone’s whereabouts, you might be able to identify individuals at risk for having encountered the Covid-19 virus much quicker.
Covid-19 was also mentioned at the end of the webinar. (If you want to know more, you’ll need to get in touch with Jon Braun at Children’s Hospital Boston.)
This would need very rigorous legislation, to avoid stigmatization, for example. Don’t balk instantly. Yes, there are obvious downsides to the loss of privacy but there are also upsides. The problem with privacy issues lies in those doing the tracking and using our data having to be 100% transparent.
Openness – loss of privacy – also protects against abuse, but only if it’s 100% (not one-sided).
With regard to AI being unable to replace empathy, it can make up for a lack of empathy (stigmatization and ridicule) coming from certain health care professionals and it also will not molest or abuse you the way a handful of medical professionals have done. (There’s a current case in the UK of a doctor who not only molested some patients, but also told some they had cancer when they didn’t and amputated their breasts and, in other cases, deliberately left tissue behind that led to reoccurrence of breast cancer.)
Globally, around 40 million people live in slavery.
Many of those are in the UK.
They are all around you.
Don’t betray them.
Do not turn them in to the police.
Because there, they will only be victimised again.
Moratoria are sometimes seen as “knee jerk” responses.
But this is what Jennifer Doudna, one of the “inventors” of CRISPR, says:
Doudna “I believe that moratoria are no longer strong enough countermeasures … stakeholders must engage in thoughtfully crafting regulations of the technology.” This demonstrates failure to understand purpose of moratorium—buy time to think carefully https://t.co/ATTH6hI7EL
— Francoise Baylis (@FrancoiseBaylis) November 15, 2019
Economists will be interested in selection of embryos
Cost of picking a “smarter” embryo? About $20,000 including IVF and testing.
Avg. cost of tuition, room, board at private college: more than $40,000 for a year https://t.co/qDuAlhNHUe
— Antonio Regalado (@antonioregalado) November 11, 2019
Children are becoming consumer products.
A series of recent studies have found that many #IVF add-ons, supplementary procedures designed to increase the chance of having a #baby through IVF, are largely based on shaky #science and have no association with increased #fertility. https://t.co/2F3zLAqRXM
— I. Glenn Cohen (@CohenProf) November 7, 2019
“Dalian Atkinson: Police officer charged with murdering footballer. A police officer has been charged with the murder of retired footballer Dalian Atkinson who died after being Tasered.” https://www.bbc.co.uk/news/uk-england-50333081
I mention him in Lecture 16 of my latest course.
The more I read about variations in neurological makeup, the more confusing it becomes at times. Turns out that I really had no idea what autism is.
(Until relatively recently, I’d vaguely thought that autistic people are shy and quiet, withdrawn.)
I’d never heard of PDA. I knew next to nothing about Asperger’s.
But reading up a bit on Asperger’s made me wonder what distinguishes it from borderline personality disorder (BPD). (I have some ideas about that but almost no experience. I’ll come back to that.)
Turns out I am not the only one!
Wow. If that is the case… That raises lots of questions. I’d already heard – and I understand why – that people with Asperger’s are sometimes mistaken for people with a narcissistic personality disorder (NPD) with or without psychopathy or sociopathy. Wow.
And I can imagine that any condition with a Jekyll & Hyde aspect – which apparently Asperger’s can have – can make people with such conditions wonder if they are bipolar. Bipolar disorder is probably not well understood either (certainly by people who don’t have it or don’t have anyone with it in their close surroundings?). Wow.
What I have picked up after admittedly only reading a little bit is that autistic people can display physical symptoms and they do not occur in the other conditions, to my knowledge. Things like clumsiness, “flapping of hands” and avoidance of eye contact. BPD does not have that. Neither does NPD. But I also get the impression that not all autistic people have these physical manifestations.
When you read a lot about these things, and this may particularly hold for the spouses of people with some of these conditions (or in general, people who’ve endured years of abuse/gaslighting and isolation), you can find yourself mentally checking if any of it might apply to yourself… That too can be confusing, I bet.
For a moment, it made me wonder what I thought I was doing when I wrote the book that I wrote some time ago. Luckily, I do have the answer to that question. (Phew.)
Yesterday, I received a petition in my in-box against adding an indication on someone’s driving licence – in the state of New York – that the person is autistic.
I am torn over that.
More confusingly, the e-mail asks me both to help support and oppose the bill and refers a letter in response – by autistic people, that is nowhere to be found (because the link to the document went .
When I searched for it, by clicking on links in the e-mail and clicking on other links, I did find it, here: https://hennykdotcom.files.wordpress.com/2019/10/assembly-bill-a08711-transportation-google-docs-1.pdf.
And upon reading that letter, and the entire e-mail, it becomes clear that the word “support” (the bill) in the e-mail should have been “oppose”. A typo.
I can see both sides and I don’t know what the golden compromise would be.
Discrimination is not a good thing.
But it’s happened – and not just once – that police officers unleashed a lot of violence at someone who was (or still is, if the person survived) autistic. Or simply deaf. Because police officers didn’t realise it.
Would an indication on someone’s driving licence help? On some occasions, yes, I am sure. In many other circumstances, not at all.
For autistic people, I can imagine it might help more if they simply call one of their friends or relatives whenever they encounter misunderstandings. Would that work in practice? I don’t know. Police officers often act first, ask questions later. Someone trying to take a phone out of his pocket, it could easily be misinterpreted as the person going for a gun, in some countries.
It wouldn’t work for deaf people as they might not even be aware that one or more police officers are calling out or yelling.
The main problem appears to be that driving licences are also used as ID in many situations in which disclosing that someone is autistic serves no good purpose, certainly in the States, where most people have no passport as Americans have a giant country at their disposal and rarely have a need to cross an international border.
Any good ideas? Is this a real problem or does this kind of stuff happen just as often to people who are not autistic?
Wearing dorky glasses or having become a bit shy because of some things that happened to you does not mean that you’re autistic. As far as I can tell, people who are autistic have brains that work differently and that makes them look at the world differently. Autistic people may lack abilities that other people have in varying degrees (social skills) but they also have abilities that others lack and they’re certainly far from “stupid” or “naive” or whatever else may be said about that. I too find autism very hard to understand, but I watched a video a few days ago that I first found very confusing, but when I thought about it some more, it became highly enlightening. Maybe it is not that dissimilar from, say, synesthesia (in which the senses overlap and words printed in black and white can have colors or pitch, for example).
People Who Try To Be Environmentally-Friendly By Buying Less Stuff Are Happier, study claims, according to the British Psychological Society.
Click on the link to find out more.
A major film will soon be released with regard to, broadly speaking, the topic of Lecture 23 of my latest course. You can already watch the trailer on YouTube:
The film is called “Dark Waters” and some of the actors are Anne Hathaway, Mark Ruffalo, Tim Robbins, Bill Camp, Victor Garber, Mare Winningham, William Jackson Harper, and Bill Pullman. It was directed by Todd Haynes.
I found out about this because the Netherlands has tightened the environmental standards with regard to PFAS. No PFAS should be found in the soil, at all, according to the new standards. (For the details, watch the video at the bottom at this page, but it’s in Dutch.)
Thousands of Dutch construction projects have been put on hold because of PFAS in the soil. There are protests going on in the country today, mainly organized by the Dutch construction industry, but also dredging companies and others.
I mentioned PFAS in my book “We need to talk about this”, but I did not include it specifically in Lecture 23.
PFAS. PTFE (polytetrafluoroethylene). Teflon. PFOA (perfluorooctanoic acid, also known as C8), which is a PFAS. GenX (HFPO-DA).
If you happen to own pet birds, you’ll know what this is about.
It is about non-stick and relatively heat-resistant materials that are not only used in cookware, but also in for example many space heaters, hair-dryers and, as I just found out, fire-extinguishing foam.
It’s been known for a long time that there were multiple problems with these products and I am pleased to see that this is now officially acknowledged.
I have used Teflon in the form of vials and beakers in the lab, as so little sticks to it. If you’re working with very low concentrations of metals in seawater, as I was at the time, it is important to prevent adsorption to the containers (the vials and beakers etc) you put your seawater in.
Of course, I’ve also had non-stick cookware at home for a while.
Roughly speaking, there are three kinds of problems with these materials:
- During production, toxic compounds are released into the local soils, air and waters and workers in those factories can be exposed to high concentrations of these toxic substances. (By the way, “toxic” is a matter of concentration and quantity. Too much of anything is not good for you; what differs is how much “too much” is. What we consider toxic in daily life concerns substances that cause problems in very low quantities or at low concentrations.)
- Notably new non-stick materials can release toxins into the air when overheated. This has killed many pet birds and also poultry (releases from heat lamps) because the respiratory system of birds is different (much more efficient) and hence birds are much more sensitive to toxins in the air than mammals.
- The related compounds also accumulate in soils and in body tissue.
I haven’t kept up with the topic in the past two years or so and I was not aware of these recent developments in the Netherlands either. So I still have some reading up to do, and maybe some e-mails to write as well.
The point I am making in Lecture 23 and also in this post is that it is impossible to know all the possible consequences of the use of any technological or scientific invention in advance. In the past we have often missed complications that seemed very obvious in retrospect.
This also holds for technologies like CRISPR.
It does not mean that we need to be scared of progress, but that we need to be cautious and use our brains, and also listen to “dissonant” voices.
If you happen to be able to read Dutch or don’t mind automated translations, here are links to Dutch news web pages:
And a link to a report:
And a video:
I just received an e-mail from Henny Kupferstein that was an eye opener. I knew that she works with autistic children via music, often using services like Skype. I had no idea, however, that she too is autistic!
As far as I know, I’ve never met anyone who is autistic or at least interacted with the person extensively. So I’ve been wondering what it is like to be autistic and I’ve watched videos that weren’t very enlightening to me, other than to make me realize that autistic people deal with the world in a different way, and find ways to deal with the expectations of mainstream people.
I’d previously gotten the impression, from Temple Grandin’s TED Talk, that autistic people have different abilities, special abilities.
In this video, Henny explains in detail how the visual/mathematical world works for her and that it is a thing of great beauty.
Now I understand it a lot better!
Many people seem to think that the idea of euthanasia or suicide only plays in the minds of weak people with wonderful lives who experience a mere day of darkness or who run into some difficulty such as a bill they can’t pay or some other challenge that “strong” people would overcome.
And this is brilliant too:
Uh oh! I can’t think of even one single thing. Can you?
I am about to watch a film called “Errors of the human body” that I just ran into at the local Scope charity shop. Although I don’t know yet how much relevance it has within the context of the new eugenics, it reminds me of (the graphics for) a session on 17 October I saw announced on Twitter this afternoon:
Friends in TO come join me Thursday, October 17, 6:00-8:00 pm The Fields Institute for Research in Mathematical Sciences
“Altered Inheritance: extinction, recreation or transformation?
a dialogue and discussion on the implications of genome editing on humans and other organisms” pic.twitter.com/8VStrWi9yT
— Francoise Baylis (@FrancoiseBaylis) October 3, 2019
If you happen to be in Chicago on the 14th, there is also this:
“We have a moral obligation as a society to respond to needs. But I don’t have the same moral obligation to respond to your wants.” See geneticist @FrancoiseBaylis at @ChicagoIdeas on Oct 14 https://t.co/gJfZhYzxkT
— Brad Keywell (@bradkeywell) October 3, 2019
“Orangutan with human rights to begin new life in Florida”
A reminder… The International Commission on the Clinical Use of Human Germline Genome Editing seeks information in response to its call for evidence.
See the link below.
Responses are due by 27 September. That’s three days from now.
Information submitted to the Commission will inform its deliberations as it develops a framework identifying scientific, medical, and ethical requirements to consider as part of a potential pathway from research to clinical use — if society concludes that heritable human genome editing applications are acceptable. The Commission’s report is expected to be released in 2020. Several question in the call invite broad input, while others are more technical in nature. You are encouraged to address those questions most relevant to your particular area(s) of expertise. When appropriate, providing citations and/or links to evidence in support of your responses is greatly appreciated.
The International Commission on the Clinical Use of Human Germline Genome Editing seeks information in response to its call for evidence.
See the link below.
Responses are due by 27 September. Information submitted to the Commission will inform its deliberations as it develops a framework identifying scientific, medical, and ethical requirements to consider as part of a potential pathway from research to clinical use — if society concludes that heritable human genome editing applications are acceptable. The Commission’s report is expected to be released in 2020. Several question in the call invite broad input, while others are more technical in nature. You are encouraged to address those questions most relevant to your particular area(s) of expertise. When appropriate, providing citations and/or links to evidence in support of your responses is greatly appreciated.