Wednesday, April 21, 2010

Is Eugene coming or going?

I knew a girl called Eugenie once.  She was the slightly younger sister of a girlfriend I had in high school.  Eugenie was a robustly constructed, strong and athletic woman who (notwithstanding any possible difficulty about the flame-red hair) would have been a superb candidate for the Nazi's master-race breeding program.  So would her sister, for that matter.



The concept of eugenics is a fraught one, especially since the Nazis took to it with such murderous zeal.  This has effectively poisoned the word for all uses now.  However, this has not stopped humanity from having to deal with the moral and practical issues around eugenics.  It's a debate that is going on all around us, but mainly by stealth, or by proxy.  Because it's a really unpalatable subject for many and not often conducive to modern notions of political correctness.

Could be time we had more of a public chat about it all though, to lay all the ideological cards on the table.

What is eugenics?  You may be asking at this point.  the word has had its meaning shift a little since the height of its usage in the early 20th century, but broadly we can define eugenics as (thanks wikipedia)

"...the study and practice of selective breeding as applied to humans with the aim of improving the species."

Easy enough then.  In practice in its ideological heyday, this meant not just policies designed to have "superior specimens" breed on at a high rate, but also to prevent "inferior or defective" specimens from breeding at all.  Just like you'd do in a herd of domesticated animals.  Improve the breed.

Certainly couldn't improve the cuteness factor here.

Now, once we get to the definitions of superior, inferior, defective, and improve, we're already in murky water.  Sweden (for example) carried out over 60,000 mainly 'voluntary' sterilizations of people between 1934 and 1975, targeting mentally ill and 'deviant' people in the main.  Versions of eugenic practices and policies were embraced and enacted by the governments of many countries in the 20th century including Britain, USA, Australia, Canada, Germany, Japan, China, Sweden, Norway, France, Finland, Denmark, Estonia, Iceland, Switzerland and Singapore (that I am aware of at least, there are certainly more) and of course any sort of 'ethnic cleansing' counts too.  As we all know, in some countries it went way beyond sterilization into mass killing.  Economically a very effective use of and savings in resources.  Why sterilize and continue to feed?  If it were a herd, we'd just eat the cull, yes?

Eugenics as a modern concept fits into a wider areas of Utilitarianism and Utilitarian Bioethics.  Don't be afraid of the nasty academic words, we'll chunk 'em down together.  Utilitarianism is essentially a school of philosophy about making choices based on doing "the greatest good for the greatest number of people", or in a slightly more recent sense 'Negative' Utilitarianism aims to "prevent the greatest amount of harm/suffering for the greatest number of people."  The addition of the 'bioethics' tag takes this stuff straight into the worlds of the biosphere, medicine, health, and reproduction.  Hence the eugenics crossover.

Think of the arguments currently about 'curing' asperger's syndrome and autism, and how that would rob their 'sufferers' of something special that the rest of us cannot experience but also may need, as a society?

When you go to the emergency room with an injury or illness, you are triaged.  This means that the first person to see you will make a recommendation about the urgency with which you should be seen by a doctor based mainly on the severity of your apparent condition and its probable prognosis.  Heart attacks get seen pretty fast, and small flesh wounds further down the chain.  You might have seen a variation on this theme many times in M*A*S*H when the choppers and ambulances bring in more wounded than they can handle.  This triage is different in that they are first looking to rule out those who almost certainly won't make it anyway, medicate them as best as possible, and get them out of the way of those who probably will make it if treated.

Triage in war.  Decisions people never want to have to make.

I so don't fancy making those sorts of decisions, do you?  But I can fully appreciate their necessity.  It is eugenics in a short-term small-population scenario.  Resources are scarce.  Spend them where they'll do the greatest good.  Bad luck for those who require too much looking after, or who have a small chance of survival (or of 'meaningful' life beyond surviving).  We accept this as necessary, in general.  So we subsume our claimed 'rights' to be treated equally to a notion of resource deployment for the common good, in these sorts of situations.

Oh, by the way, I don't have any answers to this stuff.  I'm just trying to lay it out so we can all see it.  Or so I can, at any rate.  Because there's a big personal question coming.

Despite our acceptance of emergency triage, seen from a wider perspective we as a society (I'm talking about the monetarily affluent Western world here) have a real problem with this deployment of resources for the "best outcomes for our species into the future."  It gets all tangled into the 'sanctity of life' stuff from religious and spiritual viewpoints, and the 'equality of rights' from libertarian political thought.  We spend the vast bulk of our health resources on economically and genetically non-productive members of our society.  The elderly, the disabled, the chronically ill.  We do our damnedest in so many cases to ensure the survival of the weakest, most defective babies and damaged adults who will require constant lifelong care.

Is this just social selfishness on behalf of the society of 'haves?'  We can do it, so we should? 


So, my big question:  do I continue to 'deserve' to live?


As an aside, here's an interesting set of conundra, to do with the conservative Republican movement in the USA.  They tend to go for things like Right To Life (ie anti-abortion) which means in some cases carrying to term and caring for resource-depleting high-needs babies, which of course also take an otherwise productive parent/s and/or carer out of the economy too.  They also opposed mandatory health insurance and especially opposed a form of public health insurance, preferring instead that the market mechanism stealthily 'weeded out' those people who had proved their inferior worth to society by not having been able to afford adequate health cover.  So they force life on the helpless on one hand, and deny it cruelly on the other.

Well, am I a valuable and contributing member of society?  Is a heavily resource-dependent special-needs child likewise valuable?  Or are these questions irrelevant, and if so, why?  The common answer to this last question is where we get stuck.  It tends to go along the lines of

"God says all life is sacred, ergo we should always protect it at all costs."

I would say that then it logically follows that our emergency room triage system goes against God's apparent will.  Because we are judging worthiness.  We are taking chances with people's lives.  My headache (low urgency) may well be an aneurysm just about to go whose swift diagnosis and treatment may save my life.  Oops.  I played God and had that broken finger seen to first.

I don't have a solution, as I said.  But I can see where part of the issue lies, and that's in the attempt to systematise stuff.  There can really be no authoritarian response that respects individuals' choices while attempting to muster resource usage for the common good.  People just won't fit that box easily.  We can only find out how we feel, how we would act.

OK, so I'm going to go hypothetical.

We all live in a valley village ecosystem, with a fairly stable and sustainable life.  But it's only sustainable as long as each member of our village can contribute in a practical way to the work of our survival.  I now have an injury or illness that presently and for the future prevents me from doing so, and furthermore requires that I have a carer, who would be taken out of the production cycle too.  My valley village does not judge me badly, and will of course (they say) support me in my needs.  We are all family as it were.  It's just going to be harder on everybody.  What do I do?  Another simple one: same village, ultrasound and genetic tests confirm a seriously defective fetus in my womb (assuming I had one), which will most certainly die young and be extremely impaired in life whilst requiring full-time care.  What do I do?

Do shared resources mean shared responsibility?

Impossible to say, because all the infinite variables of human existence and experience come in to play.  But there will be extreme situations that arise where my decision would be social euthanasia, rather than knowingly condemning my fellow villagers to severe hardship or danger of starvation.  If it happened a lot, the village would over time develop a history of experience of this, and may become proactive.  It's happened all over the world that we've made population control decisions, and not just with reproduction, but with the elderly and infirm.  We have responded as other species do to their environment.  We accept when it cannot sustain us.

I'll recall just one small example.  A certain indigenous tribe in rainforested South America somewhere, living as they had for centuries.  Spanish or Portuguese slavers discovered them, and  would make raids to round them up and sell them.  They started killing the very young children.  Because the adults could only run effectively with one child apiece.

Now, get big.  6 billion big.  2 to 4 degrees celsius bigger.  Scale up this thinking and ponder the choices ahead if (when) environmental or other resource-pressure shit hits the fan.

Is this why we're not talking openly about it?  We don't want to have to make choices to not have babies or allow chronically ill people to die sooner but perhaps better?  We just want a magic alpha-male figure to do all the hard stuff for us?

That's what armageddon is all about, abdication of responsibility.  Letting it happen to you through some arms-length agency beyond your influence entirely.  Not having to face the fundamental truths of your own volition, and your own mortality.  Procrastination about suffering.  Would we rather not go through the pain of being honest about death being everywhere all the time, and suffering being inevitable in life, and it all being outside our controllability, for as long as possible?

So I don't know, is Eugene coming, or going?  Are we headed for some big global (or lots of small local) conversations about all this stuff?  Or are we just letting it be subsumed in proxy talk of religious fundamentalism, carbon trading and GM crop organisms?

People are angry, all over.  And many of them don't really know exactly what they're angry about.  There is a deep frustration and fear.  We feel strapped in to this hurtling thing, and many of our fellow travellers seem hell-bent on making a total hash of any attempt to steer a half-decent course.  All in?  Or every man for himself?

I don't know.  What do you think?

I know many of my readers have situations that in some ways mirror my own, or harder still, care for those with extra needs.  Please know I am making no judgements on the decisions made by anybody.   My exploration has been about the Utilitarian ethic only as it applies to eugenicist and bioethical questions.

My personal conclusions (for now) are that one size may truly fit all, from a Utilitarian point of view.  But that only those for whom a Utilitarian ideal is right and true can make such decisions for themselves and their unborn.  I resist the notion that any authority can tell us what we should do about our lives, and their continuance.  Regardless of whether I agree that such a directive makes sense to me, it may not to another.  If I do not respect that, I would have no reason to expect my desires to be respected either.

Here endeth the rant.  Please accept these flowers for peace and make happy.



Eugene?  Are you there, Eugene?

9 comments:

  1. I think about and deal with (and hence, answer them for my family at least) these questions on a constant basis. My own opinions come from a deep place of spirituality/religion and my own understanding of social contract at its most basic.

    Having cared for a child with special needs who was told initially that her "contribution" and "quality of life" would be such that, at the least, a DNR would be recommended, I have loved a "worthless" member of society. She is anything but. :-) Knowing that we are all interdependent and part of a great cycle of "life" also colors things. "Contributing" can have many facets. It doesn't always mean adding to the GDP. Having these pieces of knowledge, however, don't make the decisions any easier.

    It's good to have these ideas brought up and out into the open. Realizing that the issues you mentioned, such as triage, public health care and some other health decisions recognized for what they are: a form of eugenics, helps us to articulate how we feel and remember that mercy and compassion are also a part of the human condition.

    I often feel that some who don't ever ask themselves these questions or don't have to live these questions are the ones making sweeping, one-size-fits-all statements. It is a great disservice to them. Re-examining our thoughts and feelings regarding these issues keeps us human. :-)

    Thanks for the reminder.

    ReplyDelete
  2. So many of these kinds of 'pressure' issues are dealt with in an -off-the-radar way, through the experiences of women who wish to be, or are, mothers.
    Through the experiences of women who, though sexually active, find themselves without the structural support necessary in their lives for following through a pregnancy.

    Through the experiences of a pregnant woman, who, because she is over 30 years of age, is put through a series of increasingly risky tests to nominate a risk of Down Syndrome for her unborn child.

    For the woman who, upon finding her risk is very high, is then offered the 'opportunity' to abort at three months.

    All of these tests are, at base level, 'voluntary'. Apparently 90 per cent of women put in this position do abort. Hmm.

    If we are interconnected, and so have a high motivation to 'co-operate' with each other, (presumably by taking actions we see as supported by the group, and avoiding actions which may see us punished by the group) does that mean Law of the Jungle generally reigns supreme?

    ReplyDelete
  3. It's a good question there. In the Swedish experience, 'voluntary' did not necessarily mean 'not pressured' or 'not exhorted.' From the late 90's they started to pay some compensation to those who were sterilized 'involuntarily.'

    The 'Law of the Jungle' question in the context of social pressures about pregnancy and abortion can go both ways these days, can't it? In some parts of society you would be shunned for choosing not to bring to term a knowingly 'defective' and high-needs child, but in other sectors, there is as you mention a pressure not to increase our population of such children.

    Maybe my point is about there not being a 'Jungle', about the lack of social cohesivity in these matters. We don't have a good set of accepted standards, excwpt by stealth and proxy, and we don't often want to examine this stuff.

    And maybe that's for the best. I feel that every such decision is unique, and notions of social conscience in the decision-making process is most usefully and respectfully left to the beliefs and inspirations of those directly involved. Not a good place for systemic authority at all, imo.

    ReplyDelete
  4. Providing a choice in many cases necessitates the involvement of systemic authority, doesn't it, though. As in... the doctor who recommends the cerebral palsy series of tests to the 35-year-old mother and the government which commissons and pays for the tests.
    Both of these necessary agents are authority agents.
    The woman, often unaccompanied at her appointment, who until that moment is uninformed of even the reality of these tests, and has a limited time with her doctor, who at this stage may still be largely unknown to her, finds herself being booked in as she is hearing of the technology for the first time.
    And yet... if there is to be a choice to abort a (potentially) disabled child, how else is the choice to be presented except by official sanction?
    Interesting discussion, btw :)

    ReplyDelete
  5. Sure, I see what you're saying here. That the 'choice' of abortion in this instance has been co-opted into officialdom by virtue of an inferred sanctioning. It's another example of what I'm saying about stealth and proxy.

    Here's a thought. Let's start to reclaim the organs of authority with a simple little linguistic revisionism. The last decade or so, encouraged by business lobby groups, we've started to refer to *the* government almost exclusively (this applies in the US, Britain and Australia, not sure about elsewhere) Let's go back to referring to it as *our* government.

    I also love the word 'sanction.' One of those rare words which has completely opposite common meanings. Sanctioning abortion (ie allowing it). Sanctions against Iran.

    Anyway, as you can guess, my urge in this is towards individual consideration and empowerment. What's often termed these days as 'voluntary eugenics.' But without the pressure of 'shoulds'.

    ReplyDelete
  6. Great comments.
    In the end, though, it a lot about the company you keep is it not?
    If we accept that each 'individual' within our society is actually a group player, tending towards actions we see as supported by the group, and avoiding actions which see us punished or excluded by the group.

    Abortion is an interesting focus of this discussion in both eugenics and individual/group dynamics because a small community (of lovers, extended family etc) have a very meaningful interest in what 'the individual' decides to do with her pregnancy.

    ReplyDelete
  7. Very interesting topic, and, having a child with special needs, something I have thought about. I wish I had something intelligent to add. I've thought about the meaning of "contributing member of society" and agree that this most certainly does not mean only contributing to the gdp.

    I was a woman of AMA (advanced maternal age) when I got pregnant with my third child. There was, obviously, an increased risk for down syndrome. Since we planned on having the child either way we opted not to do further testing other than ultrasounds because we didn't want to add risk.

    He doesn't have D.S., but he does have a genetic disorder with a lot of special needs. I don't know that he'll ever have a job, or 'contribute' to society in any financial or physical way. But what he has contributed in a human, emotional, spiritual level, not just with me, but to so many people who know him is invaluable.

    Knowing him, caring for him, meeting the people I have met because of him, the places I've gone, seeing how he affects people around him, seeing how his siblings look at the world with more compassion and acceptance...I wouldn't trade it. He has contributed more to society in his own way than I could have ever done without him.

    Because of him, I'm here on this blog. It truly scares me leaving decisions about who lives or dies to "the" government. I know the bulk of health care funds are spent on children like mine, and the elderly, as well as those with severe medical issues, but I can't make sense of the solution to 'disallow' that care in the interest of society as a whole. I truly believe all of these people have something to contribute, but I understand the dilemma.

    Great topic Eric. For the record, I find you a very valuable member of society and I'm glad to know you.

    ReplyDelete
  8. Fascinating discussion. Complex - everyone has made interesting and valid points. I echo cdlspa's comments… gdp is only one type of contribution. My special needs daughter will never be able to feed herself or tie her own shoes, yet people who haven't seen her for a while inquire about her and say they miss seeing her smiling face and her dancing! She brings giggles, smiles, and happy sighs to my life. and yes - her siblings have benefited tremendously from her life intertwined with theirs.
    Eric, I do not know you, but your blog alone makes your existence a valuable contribution to society. I love reading it. It makes me think, laugh, cry, and feel grateful.
    all the best to you.

    ReplyDelete
  9. This is a fascinating topic to explore, which I believe has become so mired in people's fears & ideas of political correctness that its difficult to discuss now. I think that when people think about eugenics, they see it only as a proactive choice where an evil government entity would start sterilizing or executing people deemed as "unfit." What they dont realize is that every choice that effects the lives of individuals and societies has eugenic (positive) or dysgenic (negative) consequences. People are terrified by the idea of proactive eugenics because they get visions of innocent, developmentally challenged children being murdered by the state. What they don't see, as you mentioned here, is that modern industrialized societies and environmental policies are having immense genetic consequences - often dysgenic in nature. We really are facing an eventual Armageddon because of overpopulation and the rape of our planet's natural resources. We are also preying on each other. I believe the massive increase in American crime since the relatively idyllic 1950's, especially extreme violent and sexually violent crime, has a genetic component. I also believe our continually falling test scores are a part of this, & that America will never catch up with the rest of the world educationally, no matter how much money we spend on education. This assertion is obviously quite controversial, but was predicted accurately by virtually all of the 19th and 20th century eugenics writers. I believe that for humanity to survive, we will eventually have to face the truth that there are genetic components to our personalities and behavior, just as has been observed in virtually every other species of life on the planet. Our ability to deal with this truth both constructively & compassionately will mark the true evolution of our species.

    ReplyDelete