Although we take seriously the threat of genetic discrimination, there aren’t a lot of examples you can offer. In my ethics class, I discuss the Burlington Northern Santa Fe Railroad case — everyone discusses the Burlington Northern Santa Fe Railroad case, not because it is such an interesting precedent but because it is all we’ve got. BNSF secretly tested their employees for genetic liability to carpal tunnel syndrome. The fact that it was genetic testing was almost beside the point. Can ever you secretly test your employees? No, you cannot. But the genetic testing angle made it extra creepy. Why? Because we are primed to worry about genetics. It is too new and too powerful not to carry with it the seeds of some unspecified disaster. We just don’t know what it is yet. We are heading out into the wilderness here, the wilderness within. How can we set about to tinker with the machinery of life without wondering if we run the risk of turning our tears acid and drowning our good intentions in our own rising tide?
Sometimes I wonder if genetic discrimination is a Yeti, a word we whisper around the campfire to give shape to our fears of the great unknown. After all, formlessness does not diminish fear, it makes it worse. If you don’t know what you are looking for it could be anything. It leads us into a state of vigilance that is both laudable and incredibly annoying, since every step forward is met by cheers and then, at the back of the crowd, a sideways glance and a muttered, “what could possibly go wrong?”
This is why I was so struck by Jay Belsky’s article, the Downside of Resilience, published in the New York Times Sunday Review this past week. Belsky points to work, his own included, that suggests some genes that may predispose children to do badly under stressful conditions – abuse, trauma, etc – are not so much “bad” genes as “responsive” genes – and that the same genetic inheritance makes them equally responsive to good parenting or helpful interventions. It is called the orchid and the dandelion theory, with the idea being that some kids do fine in all circumstances – the dandelions, growing like proverbial weeds – while others are hothouse flowers, dying in adverse conditions and blooming in the right hands. If this interests you, read more in this article from the Atlantic by the inimitable David Dobbs (and really just read anything the man writes; you can’t go wrong).
Belsky goes on to propose that we identify children with this genetic predisposition to responsiveness and target them – a good use for our “scarce intervention and service dollars.” We’re not ready to do that, he concedes. But, he asks, “if we get to the point where we can identify those more and less likely to benefit from a costly intervention with reasonable confidence, why shouldn’t we do this?”
Well, okay. A few reasons. First of all, the proposal implies a level of genetic determinism that is unsupported by the facts and fundamentally misleading when it shows up in a place like the NY Times. These are population-based observations, very interesting as to the nature of the genes and how they work, but not valid predictors of individual performance. There are too many confounding variables in the lives and the genetic makeup of individuals. As genetic counselors could tell him, even when you have the same variant in the same gene in the same family, outcomes may vary wildly.
However*, as I said in a response to the Belsky editorial, arguing the science suggests that if we could get that right it would be a good idea. History, on the other hand, suggests that creating classes of people based on what genes they carry is a dangerous proposition and not something to which scientists should lend credibility. The Belsky proposal is obviously well intended. He talks about benefitting the children who have the genes to respond, not disadvantaging the others. But, as he says himself, intervention dollars are scarce. Scarce resource are a zero-sum game. To give to one, you take away from others. You designate certain people as more worthy based on their genes. You incorporate genetics into social policy in a way that is ripe for abuse and prejudice masquerading as scientific facts. We have been down this road before. We know where it leads. It’s not a pretty place.
What does genetic discrimination look like? It looks like this.
*This is what I wrote but not what they published, because the NY Times doesn’t like sentences that start with ‘however’ and changed it to ‘but’. Whatever, NY Times.
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4 responses to “The Downside of the Downside of Resilience: A New York Times Oped Ventures Into Dangerous Territory”
However, but, along the lines of examples of genetic discrimination, there was that US military policy of banning sickle cell carriers from the Air Force Academy about 35-40 years ago
It was a presumably well intended policy that was meant to protect the pilots, very expensive military aircraft, and the lives of civilians living beneath the flight paths of destructo flying death machines, but smacked of racism compounded by geneticism.*
* I think the NYT would frown on this neologism.
Anyone with any knowledge of history has to be aware, as issues expressed here show, that something that is believed to peer into individual’s inner, inherent nature, and be used for policy, can be abused and will be abused. If simple achievement testing shows who needs help and who doesn’t, then the inherent voyeurism of genetic testing isn’t needed. In fact, the idea that our society would put its resources toward, rather than away from, those who are found (patronizingly) to ‘need’ help, is also somewhat naive. Genetic counseling has been the responsible place for genetic testing and advice, not the public commercial or policy domains. So the posting here is an appropriate response to the rather eerie Belsky OpEd
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Reblogged this on PhD students and researchers at KI and commented:
Interesting reply to Jay Belsky’s article, the Downside of Resilience, published in the New York Times Sunday Review.
I don’t necessarily agree fully, but with great possible advances ,such as personalized medicine and perhaps even personalized education interventions based on genetic testing, comes great ethical difficulties. Policy and science are not analogous, yet we wish for policy to be influenced by science so how can we as scientist stand outside and neutrally observe how science results are and could be used…