eugenics etiketine sahip kayıtlar gösteriliyor. Tüm kayıtları göster
eugenics etiketine sahip kayıtlar gösteriliyor. Tüm kayıtları göster

Eugenics, such an old-fashioned idea

It's the age of genetics.  Billions of dollars have been spent on identifying genes for important traits like diseases, fun traits like ear wax type and hair color, politically-charged traits like who we vote for and whether we're criminals, and much more.  "Precision Medicine," the idea that with bigger and better genetic data we'll be able to predict future diseases and then, presumably, prevent them, is au courant, and well-funded.

The assumption that genes determine not only our disease futures but our personalities, our preferences, and our behavior, appeals to a lot of people; some of us are naturally good and some of us are naturally bad.  And this has lead many of us to worry about the return of eugenics, the darwinian idea that populations can be improved by controlled reproduction.  That is, that we control their reproduction.  Those of us who are naturally bad just shouldn't be allowed to reproduce.  This was an idea that early 20th century America translated into the forced sterilization of the intellectually or socially inferior other, and that the Nazis translated (in many ways copying our lead) into mass murder of anyone they didn't like.

It turns out, though, that the worry about eugenics is now out-of-date.  It's too finely-honed a tool. The Republican majority in the US House of Representatives, with the enthusiastic support of our 45th president, has just passed a bill to repeal and replace the Affordable Care Act (ACA), President Obama's signature program to expand affordable access to medical care to 45 million people who had no health insurance, and to those for whom it was prohibitively expensive.

One of the most humane, important, and best-liked provisions of the ACA was that it did not allow insurers to discriminate against people who had "pre-existing conditions", illnesses that preceded their insurance coverage.  Insurance companies don't like to have to cover sick people because they cost money.  Fair enough, I suppose, given that insurers are businesses, not philanthropies, and have to make a profit (unlike a civilized country's national healthcare system, which is by and for the people rather than the plutocrats).  But, this is how all insurance works, car, home, flood and otherwise -- we all pay in, some of us cost more than we pay in, and some of us cost less.  If it's only sick people, or bad drivers, or people in hurricane zones who buy insurance, insurance companies would all quickly be out of business, which of course is why we all are required to buy car and home insurance.

But it turns out that there are good moral reasons to discriminate against people with pre-existing conditions -- according to a member of the Republican, white, male "Freedom Caucus", the extreme, and let's be honest, extremely ill-informed right-wingers in the House, pre-existing conditions don't happen to people who live good lives.  (Funny how their new list of pre-existing conditions includes pregnancy, rape, sexual harassment, breast cancer, among many other things, but not erectile dysfunction or prostate cancer. Nice discussion of this topic here.)

To ensure that covering actual sick people was going to be affordable, the ACA mandated that everyone have health insurance.  The political right never liked this provision of the law -- depending on your reading, this was due to the libertarian view that governments shouldn't be able to require that we do anything, or because they didn't want their money covering them, or perhaps a toxic mix of both -- and they've been fighting it ever since.  It's long been clear that that have no idea why a mandate was essential.  Because, who knew that health care was so complicated?

As is well known, the Republicans voted at least a zillion times to repeal the ACA while Obama was president.  Finally, yesterday, under the caring leadership of our current president, the Republican-led House passed a repeal-and-replace bill that would essentially eliminate protection for people with pre-existing conditions, as well as the requirement that healthy people purchase insurance.  And, in an ugly and cynical move that makes abundantly clear the racist and other lies behind this bill, they voted to exempt themselves from its new constraints (of course, because they're the good guys!).

This bill is bad medicine.  But that's irrelevant to Republicans and their supporters.  It's not meant to be much more than a tax cut for the rich (protecting wealth being the only core tenet of that party). And a thumb in the eye of anyone who benefitted from the ACA; the poor, the sick, and the Democrats.  It will definitely be a money saver, when 24 million people lose coverage, and then die of things that those with money don't have to die of.  As Jimmy Kimmel said in his emotional defense of insurance for all.

And this is what brings us back to eugenics.  Who needs the kind of very expensive, targeted precision promised by knowledge of genes to cherrypick those who should live and those who should die?  Let's just take away access to medical care from all of Them.  And make our country great for the oligarchs again.

Higher resolution discrimination: The GOP wants to allow employers to require genetic testing

This morning, Ed Yong published an article that takes on issues that we at the The Mermaid's Tale care very deeply about.
Link to article
The consequences for important medical research are not going to be pretty.

And I can't help but be angry about this for threatening to take away the fun of genetics too. If we can't have some control over our genetic testing, we can't do it for fun, for education, for finding out more about ourselves, for the awe of it, for innerspace exploration in the technology age. They're taking that away from us by eroding GINA.

I have lots of other thoughts... like about how this fits in so nicely with (not all of) the right's racist/eugenics inclinations.

And juxtapose this view from the political right where there is full-on acceptance of actually-more-than-genetics-can-even-deliver against their anti-science politics and policy...

It's like science is totally fine for Republicans as long as Mother Nature is a dictator.

If it's more complicated than that, then deny it, defund it, bulldoze it. The reality is, genetics is largely probabilistic; it is not a dictatorship. It's just so hard to convince people that it isn't. The ideological drive to justify behavioral differences and socioeconomic inequality with Nature above all is just too strong. If it's Nature, then we don't have to do the hard work of addressing the problems because Nature is Nature is Nature. This is really old thinking that really new knowledge (both through lots of science and lots of lived experience and lots of humanities and lots of art) has overturned but has not managed to catch on all that well. Along with new knowledge we get increasing understanding of genetics so these ancient beliefs can just be spouted by politicians using new-fangled science jargon.

This is really hard to write about today as all the stories about the proposed (and highly probable) budget cuts to science and the arts are blasting through my newsfeeds. It's overwhelming me today. I'm feeling hopeless and angry on behalf of science, art, knowledge, medicine, humanity, humans, children, teenagers, grown-ups, geezers. It's too much today.

But, back to Ed's article, I do need to put this here because it mentions that I have taught with 23andMe and longtime readers of the MT might know about that:

I don't teach with 23andMe anymore. I was doing it for as long as my university would pay for the kits. It was totally voluntary and students had to read Misha Angrist's book and endure long discussions and pass a quiz before deciding whether to go through with the testing. It was so powerful for teaching evolution, genetics, anthropology, etc... and we critiqued the hell out of it. My university said I needed to pay for the kits through course fees from now on. Before any of these threats to GINA, I decided not to do that and to stop using 23andMe. Now, even if my university reconsidered and funded the kits, I still wouldn't take it up again as a teaching tool.

Rare Disease Day and the promises of personalized medicine

O ur daughter Ellen wrote the post that I republish below 3 years ago, and we've reposted it in commemoration of Rare Disease Day, Febru...