A legal matter
Andrew Yates of Think Gene takes issue with my impassioned defense of GINA:
…you say that’s unfair and cite some fringe cases. I of course agree that your examples are unjust. Yet, I have yet to read a good argument why it is theoretically wrong if genetics is used as an objective standard to select people for services, employment, admission, etc. That good argument is not what you wrote.
How about this: It is theoretically wrong because we know that we are more than our genes and because we have a long paper trail of misguided and inappropriate social engineering supposedly based on genes.
How are we more than our genes? I received my Health Compass data from Navigenics the other day (I hope to post about this soon). Of the 17 conditions for which I received reports, heritabilities ranged from 0.13 (glaucoma) to 0.8 (Crohn’s). Most were in the 0.6 range. My lifetime risks, excluding all phenotypic data other than gender, ranged from 0.02% (lupus) to 41% (obesity). The latter is a bummer, of course, but it’s hardly deterministic (my current BMI is 26, FWIW).
The heritability of schizophrenia is on the order of 0.8–yet somehow we still haven’t found a single major susceptibility locus. Meanwhle, we have genotyped tens of thousands of people to find loci that contribute to height. Well, guess what: there are 54 and counting, each affecting height by an average of 2-3 mm (the standard deviation for height in the population is 7 cm).
To exclude a pilot because he carries a highly penetrant mendelian allele for narcolepsy is one thing, but it’s a rare thing. Genetic discrimination may be rare, too, but given the Burlington Northern precedent, given the military’s recent misapplication of genetics, given the entire ugly history of 20th-century eugenics, am I prepared to believe that government and corporate bureaucracies can be trusted to sort the wheat from the chaff and get “objective” genetic testing right without giving those getting tested some explicit legal protection?
Not yet.
I work as an Assistant Professor in the Duke University Institute for Genome Sciences & Policy (although this site and its content are my own).
In 2007 I became the fourth subject in Harvard geneticist George Church's Personal Genome Project. As the PGP moves forward, I am chronicling the dawn of personal genomics, that is, people obtaining their genomic information for whatever reason(s) and figuring out what to do with it. I am interested in the relevant technologies and especially the attendant privacy and other ethical/legal/social issues.
This blog may also discuss some of my non-genome interests or, to paraphrase Dwight Yoakam, "Guitars, Cadillacs, hillbilly music, etc etc."
The header image comes from the Liz Lerman Dance Exchange's multimedia performance piece, "Ferocious Beauty: Genome."
May 25th, 2008 at 1:23 am
I am gonna give you a great big bear hug!
Hooray. I will post on this all too soon.
Thank you.
-Steve
www.thegenesherpa.blogspot.com
May 26th, 2008 at 9:09 am
[…] noisy expression story is another illustration of how we are not just our genes. The DNA-sequence may be a defining starting point, but there are levels and levels of variation on […]
May 26th, 2008 at 9:19 am
Aw, could you at least correct my spelling error?
OK, so we can’t trust irrational bureaucratic risk abhorrence, nor can we trust today’s science.
So “Not yet,” I agree. “But yes,” someday we will trust governments and corporate bureaucracies because genetic tests will eventually be good objective information by which to make decisions.
“It is theoretically wrong because we know that we are more than our genes and because we have a long paper trail of misguided and inappropriate social engineering supposedly based on genes.”
So you are saying that selection by genetics is wrong IN THEORY, even if the science matures, the legal framework exists, and the results are interpreted justly?
Again, I support GINA because I certainly don’t trust governments and corporations to understand nascent science, nor institute just social policy.
But I also support meritocracy and making decisions using objective data.
May 26th, 2008 at 10:11 am
I certainly am not comfortable trusting US corporations with my genome. It is unfortunate, because genomic medicine is a great step forward, but the insurance companies are anxiously awaiting the loopholes that will allow them to profitably discriminate. I don’t think we’re likely to get to the utopia of sharing genetic knowledge as long as private insurance remains dominant. It will be interesting to see how long it take the countries with large socialized healthcare systems to start instituting genomic medicine on a large scale.
We’re a long way off from the time when the average person and their elected officials trust in the sharing of genomic information, so it’s just not going to happen, even if there is useful objective information that can be gained.
May 26th, 2008 at 10:20 am
I stand by my opinion that the problem is that society doesn’t value people beyond than any potential liabilities.
Genetics is merely the latest means by which to disqualify yourself or mark yourself replacement. It’s not special or problematic this way itself.
May 26th, 2008 at 10:37 am
[…] Misha Angrist of Genome Boy writes in response to a comment I made about a challenge to produce an explanation why it is theoretically wrong if genetics is used as an objective standard to select people for services, employment, and admission. How about this: It is theoretically wrong because we know that we are more than our genes and because we have a long paper trail of misguided and inappropriate social engineering supposedly based on genes. […]
May 26th, 2008 at 1:09 pm
“So you are saying that selection by genetics is wrong IN THEORY, even if the science matures, the legal framework exists, and the results are interpreted justly?”
Perhaps I shouldn’t have said “in theory.” But your caveats are huge: the science has not yet matured, without GINA the legal framework doesn’t exist, and we have plenty of evidence that we’re not terribly good at interpreting the results justly. Remember that this whole thread started because Michael Kinsley came out and basically said GINA was stupid and unnecessary. You and I agree that that’s not the case.
Sorry about the sic.
May 27th, 2008 at 11:51 pm
I wouldn’t say GINA is unnecessary, but considering the cavernous loopholes in the law, I wonder if Kinsley’s not right about the other part.
I agree that the necessary body of information necessary for proper interpretation by policymakers and policywriters just isn’t here yet. I also agree that we’ll have a hard time getting a large enough sample of screened individuals without some assurance that they won’t be picked on, but I just don’t think GINA is the way to do it. Worrying about your insurance rates going up or being rejected is a valid worry, but surely for every one risk factor that increases, you’ll have tons of things for which your risk can be shown to be very low, so why wouldn’t insurance companies keep taking your money? Wouldn’t this eventually lower risk, and therefore costs across the board? If you’re worrying about consumer uptake of genetic screening, GINA’s the last thing you’d want, because without it, the insurance companies would make it a part of their initial health screening, insuring massive uptake. That could only be good for patient health and the science, too.
Categorically forbidding insurers from using the results of your genetic screening is artificially keeping the market from being able to price your risk, and it’s going to be pretty much impossible to prove a violation anyways, so considering your suspicion of government ability, working with insurers seems like it would have been a better plan than promoting some unenforceable law.
Don’t get me wrong, some regulatory framework is certainly needed, especially at this early stage, but I really think the current approach is the wrong way to go about things.