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
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(Until relatively recently, I’d vaguely thought that autistic people are shy and quiet, withdrawn.)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.
My microwave finally gave up the ghost a few days ago. There had been one or two earlier occasions when it was using energy but not heating food, so it was no big surprise.
The first thing I did was go online and look for a new one. Old habits die hard. It is very tempting to run out and get for example a new shiny red one right away as I rely pretty heavily on my microwave (and a red or black microwave is prettier than a white one). I very rarely use a stove or oven.
But this one had come from someone else’s kitchen remodelling project, and served me well for years. I’d bought the one before that new, and it did not last long at all.
So, operating from a non-consumerist point of view, I was hoping to find another one that was getting tossed out or already got tossed out during a kitchen renovation. Those microwaves often still work fine but as they usually have no legs and their looks may be a bit less appealing, most people probably don’t want them. They’d look a bit odd in a shiny new kitchen, granted.
So I went on freecycle, posted my request and crossed my fingers. I received three offers! I only needed one – which was very kindly dropped off, too – so that means that two other local people whose microwaves are about to break down will be in luck.
There is still so much stuff sitting around unused in people’s sheds, basements and attics. It means that something else does not actually have to be bought yet, with the various environmental burdens that purchase would entail.
Saifullah turns 72 on 17th August 2019. Tomorrow. He could die in Guantánamo without ever being charged with a crime. He’s been there for 15 years! Help give hope by adding your message of support. https://t.co/mXhu2kuYaa
— Angelina Souren (@littlesandgrain) August 16, 2019
Brain scans in order.
Let’s face it, no people in their right mind – with perfect brain health – would do something like this, knowing fully well they would get arrested and possibly put away for a long time.
Brain-based health conditions carry a huge stigma, but when you think about it that strokes, brain tumors and traumatic brain injuries can alter someone’s personality rather dramatically, you realize that it is the brain that creates any person’s personality and that we have relatively little control over it.
That idea makes us feel uncomfortable and that’s why we prefer to assign blame to other people’s brain-based conditions that make them do bizarre things such as throw a random young boy off a building. It simply makes no sense. Hence, there is some pathology at work here. Period.
Never had any problems with landlords in the Netherlands. Never.
Had three in Florida. The first and the third were fine, but the second one was not and his attorney was rumoured to have mafia ties, I kid you not. But I heard that later. I think it was actually a legal aid lawyer who told me that who I talked with later, long after I’d moved out and his lawyer started pestering me. I’ll spare you the details.
My third landlord was the husband of the person I volunteered with on Saturdays and sometimes Sundays. (He was a builder, built huge places, the way they are in Florida. Nice guy. I think he was in the US Army for a while, and they lived in places like Morocco. ) She stopped by one day – to bring me two birds – and was appalled and suggested I move in to one of their places. They owned a small apartment building that was mostly used by snowbirds (people from for example Canada who take winter vacations in Florida).
Some time later, I moved to Britain.
In Southampton, I knew several landlords. (Only one of them was mine.)
One said that only educated people were decent human beings, and I was too shocked to respond. He called tenants who rang him because the washing machine or heating wasn’t working (properly) “bad tenants”. This was not my own landlord, but someone I met within a business context and was friendly with for a while. Wasn’t actually a bad guy at all, strangely enough.
I also knew one who proudly told me how he had tricked an elderly woman with beginning Alzheimer’s out of her flat, I kid you not.
On another occasion, the same guy was talking with me about a new building he was constructing and then added that it did not have to be very good “as it is only for tenants”.
In Portsmouth, I’ve met two who dump rubbish on other people’s front courts and patios. I caught one red-handed and the other one admitted it.
I have principles.
If I can help make things better for people who come after me who are less strong in some way – okay, except physically as I am getting old and I am feeling it – I will try to do that. And that baffles the hell out of (most) Brits. But that is not my problem.
However, it can come across like that on the disadvantaged side of exclusive solidarity:
I find this talk very enlightening, also with regard to my own situation as a migrant in the UK. I will have to do some thinking about how I can apply this knowledge.
What Rebecca Saxe calls parochialism, I call exclusive solidarity (as opposed to inclusive solidarity). Rebecca Saxe’s talk also explains that scarcity – imagined or real, as opposed to having an abundance mindset – causes it. Parochialism. When you’re afraid that there won’t be enough for all, you will only want to look after your own.
In connection with this topic, this book by Kathleen Taylor, another neuroscientist, is very enlightening as well:
In my latest course, I also talk about stigmas, including the fact that I unsuspectingly became burdened with at least five stigmas after I moved from Amsterdam to England. It’s shocked and hampered me greatly, and it also taught me a lot.
My most embarrassing moments in this respect?
Finding myself wanting to emphasize that I am not eastern European “or something like that”.
Because even worse than being seen as a migrant was being seen as a migrant from eastern Europe “or something like that”, when I was living in Southampton.
“I am not one of them. I am one of you, I am one of us.”
I still cringe when I think back to it.
Nobody is immune to the destructive self-perpetuating power of a stigma.
One of the questions in the course is the following:
Find as many plant-based egg substitutes and (perfect or not) plant-based protein sources as you can find. Here are some responses.
Aquafaba is a good alternative for egg whites:
Beans and rice are a great combo.
Buckwheat is a perfect protein source.
Pea protein powder is pretty awesome.
Taking a twitter break (mostly) while I try and finish the book – “Stigma Machine”- which accompanies this wonderful gif — ( a gif I very much enjoyed designing in collaboration with graphic artist Tom Morris https://t.co/bosmPpuHQv ) pic.twitter.com/yO0z6YOObC
— Imogen Tyler (@ProfImogenTyler) November 30, 2018
The topic of pain is part of the course. Want to know more?
Take a look at videos from the 2015 conference Visible Solutions: How Neuroimaging Helps Law Re-Envision Pain (on Vimeo).
I mention it in may latest course.
It is part of the many examples that it is foolish to embrace everything that looks like “progress” without ever asking questions.