Eugenics
Schroedingers Cat
Shipmate, Waving not Drowning Host
in Purgatory
I have been watching a BBC4 series (2 parts) on Eugenics - should still be available on iPlayer if you have that available. It is both incredible and intensely disturbing.
What is clear is that, while very few people would openly admit to be eugenicists, the ideas (which date from Darwin, and were widely accepted and supported in the scientific community across the world) are still very current. This series is actually very good at debunking these core ideas.
Most shocking (maybe) - there are still those in the scientific community who hold onto the eugenics ideas - that our intellegence, life expectancy, success - are genetically defined. They stated that as a species we are far less genetically diverse than most.
In the public view these ideas are even more common. And they are behind much racism (see the far right) and the oppression of the poor and needy (oh look, the right again).
What is clear is that, while very few people would openly admit to be eugenicists, the ideas (which date from Darwin, and were widely accepted and supported in the scientific community across the world) are still very current. This series is actually very good at debunking these core ideas.
Most shocking (maybe) - there are still those in the scientific community who hold onto the eugenics ideas - that our intellegence, life expectancy, success - are genetically defined. They stated that as a species we are far less genetically diverse than most.
In the public view these ideas are even more common. And they are behind much racism (see the far right) and the oppression of the poor and needy (oh look, the right again).
Comments
And (in it's co-option of Darwinism) there is a definitely a contradiction where it complains that the 'fittest' aren't surviving or that the 'unfit' are.
That said if we could do eugenetics on the individual gene level it would be a lot more tempting. Hey you can have a baby that is exactly yours except we've ensured it's got exactly one Sickle-Cell gene. But I know even that would get fubared pretty quickly.
Humans have monkeyed about with plants and livestock for centuries, arguably engendering improvements to benefit our species. We've developed vaccines to prevent certain disabling illnesses like polio. Is there a real moral difference between (A) injecting a child with a vaccine to forestall polio and (B) altering fetal genomes to render a child immune to that particular virus (assuming this could be made possible)?
The real problems with eugenics are three-fold, and have long existed in human society: one, ignorance; two, multiple utility; and three, inequality.
The first problem is we don't know what we don't know, a la Rumsfeld's "unknown unknowns." We risk, as we always do when pursuing the advancement of knowledge and capability, unanticipated, un-planned-for, and potentially dangerous consequences.
The second problem is the simple well-established fact that any technology (in the widest sense of that term) which can be used to good effect can also be used to ill effect and probably will be).
The third problem is that our knowledge-pursuits move forward in a human context already rife with inequality (it's apparently part of our nature, as rank-ordering primates). How can we assure the equitable distribution of new benefits to our species when we create these in an inequitable environment (and, it could be argued, may require inequality to ensure their creation/development in the first place)?
The problem was, they make it clear this was only available for resolving illnesses that would make life problematic. The problem, as I see it, is that this can be applied at any level. Maybe it is problematic for children to have Sickle-Cell. But maybe it is also problematic for children to have mental health problems. And in some cultures, it is problematic for children to be female. Or poor. Or non-white.
@Doublethink - I have seen it, but will go and re-read. Thank you.
Indeed. Remember thalidomide ? An obvious response to that risk would be to limit the proportion of people who receive any particular treatment until the point where the first recipients have seen their children develop normally.
But that would be maybe 60 years ?
And there's the ethical issue.
To a utilitarian, it may well be for the greatest good of the greatest number to adopt a cautious approach. But utilitarianism underpins the old-fashioned idea of eugenics - improving life for everyone for ever after by not allowing those with undesirable genes to reproduce.
If you take the main alternative view - that it's wrong to use people as a means to an end - then arguably you can't morally deny anyone a treatment that would make their life better on the grounds of possible societal-level consequences.
Are there countries that would try to develop a warrior caste of super-soldiers ? Of course there are.
We don't as a species have the wisdom that we would want any user of this technology to have.
See first problem...
I feel you have highlighted an important point for me. Is part of the answer to ask the communities of people with particular characteristics how they feel about interventions?
The Downs Syndrome community has an active campaign against new forms of screening, for example. Based on that kind of example, my reflection is that the acceptability of an intervention may depend on whether the characteristic is associated with identity for those that have it, and whether there are communities gathered around that identity.
The nature of any intervention would be important too. This article makes an argument that selecting for deafness is, for example, acceptable - while deliberately causing it is not. In contrast, for example, I can’t imagine an intervention that nullified genetic predisposition to breast cancer being unwelcome, if the individuals treated could otherwise go on with their lives. This is a latent, unpredictable and potentially life-shortening characteristic.
So might workable ethical controls be as follows?
1. Where the intervention affects or is related to an identity characteristic, it should be considered acceptable by the community of individuals with that characteristic, if it is to be used.
2. No intervention should intentionally remove a capacity or ability from an individual.
3. Where interventions address latent, unpredictable and potentially life-shortening characteristics, there is a positive case for the development and implementation of such interventions.
But some version of @Camerons idea might work - where the baseline is "don't do it". But, of course, some people will ignore the ethical guidelines (He Jiankui a prime example recently).
They interviewed Downs groups, but also a lady who had extreme albinism, which had also caused blindness. She said that the idea that she should not exist was hard to hear. And that is the message of Eugenics - these groups of people should not exist. My worry is that by allowing these ideas to take root we are on a very dangerous path. Conceptually, when we can edit genes to prevent X, and have for 30 years without problems, why do we then not euthanise those with X, just in case? Or at least sterilise these people? And then we are into full-blown Eugenics again.
And yes they interviewed someone from the Romany community who had been sterilised without understanding what they were agreeing to. Something that happened a lot to the Romany community. This is Eugenics being practiced in our lifetime.
The idea that government can properly manage genetic manipulation is laughable in light of how they are currently failing to manage governing at all.
I had friends (both now deceased) who objected to any medical coercion, including compulsory vaccines and even adding elements like fluorine to drinking water? I think that is extreme, and a major point here is that SFAIK no inheritable genetic diseases are contagious, so one could not apply the sort of argument which one might apply to measles vaccination. The only impact on society seems to be cost.
It's very difficult to ask questions as to the morality of bringing children into the world knowing that they will be seriously disadvantaged. I am queasy about it when the resulting outcome is very severe.
This can be alleviated by genetic counselling, and there has been quite a lot of publicity (relating to Rabbi Kushner - I believe) of the attempt to avoid Pillipi's syndrome in a group of conservative Jews (who reject birth control) by DNA analysis to see if a couple would have children with that syndrome. Of course, there only permitted solution is to avoid marriage. I find it difficult even to approach the question of whether it is moral, knowing that any child would be so seriously affected, to then bring one into the world, because pointing any finger of blame at people so out of luck genetically seems so harsh.
I would class that as voluntary eugenics. It is only by belief is Christianity that holds me back from advocating wider programs.
My go-to ethical philosopher for a secular point of view is Peter Singer, and I'm he would see eugenics as a worthy goal but view the sorts of experiments that were highlighted by the BBC programs as morally indefensible, as he is in general against coercion. And I think its disgusting that people try to attach the accusation of Nazi to him for supporting the legitimacy of killing severely handicapped children (with parental consent) when three of his grandparents perished in the camps.
Like Nietzsche, he is much quoted by Christian apologists because he poses a radical view of what godless ethics entail and a lot of atheists are uncomfortable with him (as in his refusal to refuse human status to unborn children in the abortion debate with the corollary that any condition that justifies abortion justifies (in his view) swiftly executed infanticide).
ISTM that if unborn 'children' are accorded human status they must be regarded as bearers of human rights, and as such cannot be murdered i.e. aborted. If, however, they are something different i.e. foetuses they do not have to be accorded human rights. Isn't that the distinction between the approach of anti-abortionists and pro-right to chosers on this highly contentious issue?
Regarding 'swiftly executed infanticide,' isn't it more than less likely to reduce the number of abortions undertaken out of fear of infant abnormality?
Perhaps I should add that my own opinion is that in terms of public policy the choice to abort should rest with the mother rather than the state.
The anti-abortion crowd should be able to persuade mothers to not abort, given material and emotional support. If only they hadn't spent the last 40 years being such assholes in public.
They should ensure that somewhere in the range of $100,000 to 200,000 is given directly to mothers for each child born and not aborted. This amount corresponds to the one year cost to keep a person in maximum security federal custody in Canada. So we know it's affordable. If they won't do that they should STFU completely and permanently.
"Ah," I might reply. "Then you are okay with women who get pregnant as a result of rape getting an abortion. And all women are subject to rape, so all fertile women need contraception. Otherwise STFU about volunteering to have sex."
And another storyline is the BrightBorn foundation, who are practicing eugenics - they can produce babies with none of the the normal defects found randomly in the population. And to do this, they are "terminating" babies with defects. But - as they show clearly - these "ideal" babies are very much sought after. Which - I suspect - reflects the way such an organisation would be greeted.
I think it made a good job of showing the effect of any talk of eugenics on existing people with disabilities who hate the thought of being looked on as inferior in any way. And the program was refreshingly frank in pointing out that the only real continuation of eugenics is abortion practice - removing the genetically unfit.
But still I struggle with seeing all life as a blessing, even despite knowing that the idea of lebensunwertes Leben was a Nazi slogan which nobody want to seem to offer any respectability to. I can't have any sympathy for the idea than "the world would be a better place" had somebody not existed, because the world is a big place and we can absorb things that go wrong. But I do worry about the effect on individuals and especially those who care for them, as there is so little support.
But to be fair the other presenter Adam Pearson (who has neurofibromatosis) was supportive of those who use genetic screening to avoid bringing those with disabilities into the world. Where I may be at odds with many on this ship, and even with Christian ethics, is I see no actual benefit to the existence of disabilities, and I see no logic in seeing a triumph in the elimination of caught conditions like polio, but suspicion of any attempt to rid the gene pool of serious genetic disorders.
I also tired of all the typical BBC breast-beating that this started in England so aren't all English really racist bastards. The conclusion that it was started by Scientists so aren't all scientists racist bastards was at least not drawn.
Define genetic disability.
Trisomy 21 causes Down's syndrome. That's easy to prevent. Test and abort is one response. However, no so fast. Where are lines to be drawn?
HLAs - human leukocyte antigens are proteins which are on white blood cells. Certain HLAs can be tested for, and a group will show positive results. Of that group, only some will show a disorder associated with the antigen.
Example, HLA-B27 is associated with Ankylosing Spondylitis (AS). People who have HLA-B27 positive have an increased frequency of this form or arthritis, which fuses the lower backbone, the ribs to the sternum and the coloured parts of the eye. Quite a serious condition if progressed. However, many people have HLA-B27 and do not have AS. There is suggestion that this genetic condition may be associated with the ability to fight some infections, but no-one knows yet.
So do we abort people with HLA-B27? I used this example because about 5% of people are HLA-B27 positive, but only 0.1% have AS. Who do we eliminate before birth? All of them? Do we wait until they show symptoms? Which is likely not until the early adult years.
Heck, start by defining "disability". There is a fair amount of literature on the idea that it is society that disables people, not that people have an intrinsic disability.
I might suggest a "barriers" model as well. If I'm in a wheelchair and the access is proper, and legal, within Canadian requirements, I have zero disability for an office job. If there are stairs, I have one.
Also the problem is that we as a society need to make society as accessible as possible for the greatest number as possible, hence wheelchair ramps, elevator labelings in braille, etc. If someone with a disability as common as blindness or deafness is being excluded when they could be included, particularly in ways that are known and implementable, then society has failed them.
I was shocked to see when visiting Europe that wealthy countries often make only token efforts at accessibility. These are enforced by law where I live. All public buildings must be accessible. Which means, for example, on a heritage building, the accessible renovations are expensive to make it match.
Probably in a few contexts, one of my disabilities (I have no 3D vision) could be serious, and I believe it makes landing light aircraft, more hairy. And if my colour blindness were more severe, it would bar me from some jobs, rather than just being told that a thing's brown when I think it's grey. As with so many continua is hard to find the dividing line, just like a cliff that's so high at one end you'd be dead if you fell off it, but which you can step off at the other end. When does it start to be high? or dangerous? There'll never be a precise answer.
Although I agree that we can use the term to put people down, I think that the most common need for a definition is when we are trying to access some form of social assistance.
At four feet high. At least in the U.S. that's the OSHA standard for heights where fall protection is required.
No, they aren't. Because the Sami speaker can, if he chooses to move to New Jersey, learn to speak English. A Deaf person can't learn to hear. (Yes, there are things like cochlear implants, so that statement is slightly a lie. There are some in the Deaf community that refuse things like cochlear implants for their children, preferring them to remain deaf. And cochlear implants aren't useful for all causes of deafness.)
Not exactly. The legislation in my jurisdiction reads the equivalent in metres, and also that if falling from less than that creates an injury risk fall protection gear must be worn. Last time I attended a conference about the matter (at least a dozen years ago), of the 50 states in USA and 13 provinces/territories in Canada, 38 had similar regulations (looks like they have lost member jurisdictions, see link below). So yes, the 4 feet is one line, which is the line where employers cannot be fined by workers' compensation boards if the worker doesn't have fall protection gear in use and falls, though their premiums still rise if they have an injury to an employee. I didn't search http://www.aascif.org/ to find any updated guidelines, I hadn't heard they'd changed.
The hierarchy of controls is being used right now in a volunteer board I sit on in the argument for changes in traffic infrastructure including walking and cycling versus requiring cyclists (and peds?) to wear helmets. The other stuff is work.
Alarms can be (and in fact SHOULD be) visual as well as audible (My alarm clock is a light.) Though not deaf, I am hearing-impaired and have a "doorbell" which flashes a light (but makes no noise, so as not to bother neighbors) when someone's at the door. And surely no reasonably prudent person crosses streets without looking first to see if a vehicle is approaching. Car horns, when pressed, should also flash lights. Shouts are often accompanied with arm-waves or other gestures.
As someone with a hearing impairment (but not deaf), I don't regard myself as disabled, but definitely inconvenienced on a regular basis. I belong more fully to the hearing community, not at all to the deaf one (I have perhaps a dozen words of Sign). I do need headphones to use TV or radio so as not to drive my neighbors mad, subtitles to watch movies, and I struggle mightily in class with students who cannot or will not or simply do not speak up on request.
I am not prevented by my hearing deficit from carrying on as people with normal hearing do, though I do need some help from assorted technologies. It's like wearing glasses to correct a vision deficit. Nearsightedness is not regarded as a disability, is it?
Equip human environments with alarms that reach multiple senses. Render them accessible to people who locomote in a variety of ways. Make counter-tops, doors, drawers, etc. usable by people with a variety of grips. Expand the definition of "normal."
In rural communities there have always been families who have had a reputation for producing "funny" children - and in many cases developments in medicine have been able to (a) confirm the "funniness" and (b) give it a name. Similarly, it has always been known that families that keep marrying cousins end up with worse problems with disease - at the moment there are great efforts being made to offer genetic counselling to some New Commonwealth communities where repeated cousin marriage has brought about a greatly increased risk and incidence of severe kidney disease. Is it "practising eugenics" for people to be counselled to avoid cousin marriage, or for prenatal testing to be offered - I think the answer is yes, but I don't think it can be argued that it is a bad thing.
As always, it is the misuse of science, coupled with the misuse of words and descriptions, that end up with eugenics being a dirty word.
Flashing lights in the corner of my eye make me react in a really bad way. The only things that should have flashing lights anywhere near a roadway are emergency vehicles, and their lights should flash when and only when they need to say "get the %$# out of the way, I'm coming through".
There's a digital billboard that I drive past on my way home, and at some point in its cycle, it changes from red to blue. That thing is evil.
Avoiding inbreeding is not eugenics.
The Vadoma tribe in Zimbabwe (Wikipedia) are also known as the "Ostrich people". Many of them have "ectrodactyly", a genetic disorder which causes feet with only two toes, hence a resemblance to an ostrich's feet. It's due to having a very small gene pool of people.
Not sure it's that simple.
What I thought we were talking about here is
A) the possibility of making changes to the DNA of a fertilised egg cell before implantation in the womb (e.g. so as to cure genetically-determined conditions such as certain types of deafness)
C) governments having a list of conditions (such as deafness) for which they permit A) or
Which of those would you consider to be eugenics?
Seems to me that part of the reason for eugenics being a dirty word is the element of sacrificing the rights of the individual for the perceived good of future society.
If we're talking about parents making choices for their yet-unborn offspring, where's the dirt ?