Friday, June 15, 2012

Direct-to-consumer racism?

Ken and I have often cautioned here on MT and elsewhere that society may be flirting with a new era of eugenics with our new genetic technologies that claim to be able to assess our ancestry and our risk of disease or other traits.  More ominous are these new technologies coupled with current attitudes about genetic determinism.  History shows the horrors that the misuse of science in this way have been visited on millions of people.  This could be a legitimate concern even if scientists, today, unlike the past, would  cringe at the thought of such uses of their work.  But are we wiser, kinder, and gentler than our benighted forebears, or is vigilance just as needed now as ever?

A story in this week's Nature, "Genome test slammed for assessing 'racial purity', is a case in point, suggesting that this isn't just hysteria on our part. A genetic diagnosis company in Hungary, licensed to do genetic testing for health purposes, has certified a far right member of the Hungarian parliament to be free of Roma or Jewish heritage.  The company scanned 18 loci for variants that they say are at higher frequency in Roma and Jewish populations.  They produced certification of the candidate's pure Hungarian ancestry in time for the election, which this candidate went on to win.  How much the certification had to do with the win, who knows, but that's not the point. 

Nature reports that the company argues on its website that it “rejects all forms of discrimination, so it has no right to judge the purpose for which an individual will use his or her test result, and so for ethical reasons it could not have refused to carry out the test."  Even so, many in Hungary have reacted negatively -- the government has condemned this misuse of genetic testing, Hungary's Medical Research Council secretary says it's "professionally wrong, ethically unacceptable -- and illegal," a Jewish member of the company's board resigned. 
“The council’s stand is important,” says Lydia Gall, an Eastern Europe and Balkans researcher at civil-rights group Human Rights Watch, who is based in Amsterdam. In Hungary, “there have been many violent crimes against Roma and acts of anti-Semitism in the past few years”, she says. Politicians who try to use genetic tests to prove they are ‘pure’ Hungarian fan the flames of racial hatred, she adds.
It's important to note that the testing did not precede the racial hatred, but it does serve to feed the frenzy.  This is why we have so often cautioned that scientists need to be very careful about the kinds of uses for which they use or advocate genetic testing.  Not long ago similar ancestry testing was proposed for screening immigrants to the UK--for national 'security' purposes.  Sound familiar?  It's just what the British eugenicists were up to 85 years ago. 

The problem is that when the horse is out of the barn, it's too late.  So, indeed, it's a very delicate and difficult issue, but there are arenas into which scientists should not tread -- or not without some clear and controlling societal agreement on what can and cannot be investigated.  


Holly Dunsworth said...

DTC for everyone would take all the thunder out of the racist use and all the fear of determinism out as well. DTC for all... it's the only way.

Ken Weiss said...

I wish I could agree, Holly. The thunder might lessen, but the problem would remain that then the information can be used in a discriminatory way by governments or other groups, doing it openly or otherwise.

Whether it's worse than surname or skin color or neighborhood, or gender, etc., or other similar sorts of equivalent discrimination is a legitimate question.

The potential for abuse, and countries' clear history of abuse, past and present, shows that it's a serious one. Maybe with no answers.

JKW said...

The problem is not the availability of DTC testing and personal genomics services. Genetic determinism and exceptionalism is unfortunately perpetuated by many bioethical articles, professional association position statements, and regulatory policies. The longer we neglect the scientific illiteracy problem (which includes genetic illiteracy), the worse off we all will be. Anthropologists have a very serious and urgent duty to educate everyone (particularly those off university campus!) on our rich human diversity and heritage (our very distant and more recent pasts alike). DNA ancestry tests coupled with education, in my opinion, can serve an important role in mitigating racism.

Anne Buchanan said...

Of course, it's not the information that's racist, it's what's done with it. Science can't be blamed for that -- and whether the Hungarian genetic testing knew what this test was going to be used for and should have refused to do it is a question that society has to answer (I know my own answer). But at the very least scientists need to think long and hard about what can be done with the fruits of their labor. This isn't a new issue or responsibility for science of course, and of course ethical issues in science overlap with ethical issues in society in general so science can't decide these questions alone.

Unfortunately, genetic determinism has become an ideology , and equally unfortunately this is in part with support from scientists themselves. Far too often determinism is assumed, and goes way beyond the evidence. Here's where scientists need to be, but aren't, extra vigilant when popularizing -- and now selling -- their work.

Anne Buchanan said...

I agree, except that I'd also say that there are too many determinist scientists, both within Anthropology and without, and too many DTC companies selling results that aren't really ready for prime time that are an additional part of the problem.

James Goetz said...

I think we need to accept that the genie is out of the bottle and will not go back into the bottle. The best we can do is educate the world about the illusions of the genie and the potential abuse while using the genie. Also, that is scary that a politician in Hungary ran a campaign with a a focus on "racial purity," regardless of what he used for evidence of his "purity."

Anne Buchanan said...

I agree.

Ken Weiss said...

It's just what history shows happens. "Genie's out of the bottle, nothing we can do about it, have to accept reality, just be careful..."

Famous last words. It's a kind of acquiescence because trying to stop something that might turn very bad when it hasn't really (yet), is difficult, but it's the step by step way that really bad things build when they do.

Will we have to go through another round, or will people behave themselves this time? Is education really any different of a factor now than it has ever been? I hope you're right.