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Genes and Pre-K: An Ethical Dilemma

November 29, 2014

Tomorrow’s NYTimes features a thought provoking and fascinating article on recent findings that link genes to early intervention programs for troubled children. “The Downside of Resilience” by Jay Belsky describes international longitudinal research on the role genetics plays in determining whether a child is affected by developmental experiences. After examining the impact of early intervention programs on groups of children from an array of racial and ethnic backgrounds in studies that were conducted independently from each other, researchers have concluded that genetics DOES play a role in determining who will benefit most from intervention:

Every gene contains two so-called alleles — one from each parent. There is evidence that people who carry certain variations of these alleles have a greater chance of developing particular disorders. For instance, short alleles of the gene 5-HTTLPR, which transports serotonin, have been linked to depression, while long alleles of the dopamine-receptor gene DRD4 have been linked to attention deficit hyperactivity disorder. Intriguingly, these “risk” genes also turn out to be associated with heightened sensitivity to environmental conditions. Children who carry either or both of them appear to be most adversely affected by negative experiences, and seem to benefit most from supportive ones. Children without them seem relatively immune to the effects of both supportive and unsupportive environments.

My mind immediately went to the thorny question Belsky posed near the end of the article after elaborating on the various studies:

This brings up a challenging ethical question: Should we seek to identify the most susceptible children and disproportionately target them when it comes to investing scarce intervention and service dollars?

Belsky answers in the affirmative, while suggesting more research be done simultaneously. He then elaborates on his reasoning:

Those who value equity over efficacy will object to the notion of treating children differently because of their genes. But 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? What is ethical, after all, about providing services to individuals for whom we believe they will not prove effective, especially when spending taxpayers’ money?

I appreciate Belsky’s acknowledgement that the quandary we face is in part based on the reality that funds for intervention will be limited. Most arguments for equitable treatment— including many advanced in this blog— are based on the rosy assumption that because we have a moral imperative to provide equity we will raise whatever money is needed to ensure that we can achieve equity. And most who argue for early intervention— including me— base their advocacy on the assumption that the intervention plans would be customized based on the unique needs of each child. Finally, a case can be made that we are already on the path of providing medically-based programming for children: IEPs are based on the findings of a school psychologist and 504 plans are often framed based on the recommendations of physicians. On  coldly logical basis it seems to me that adding genetic counselors to the list of “intervention advisors” is not that much of a leap… and yet the notion that genetics might play a role in public policy DOES seem chilling… especially if we are unable to develop some means of intervening in cases where children are NOT affected by their developmental experiences.

Belsky concludes his essay with this paragraph that opens the doors to even more questions:

For now, after half a century of childhood interventions that have generated exaggerated claims of both efficacy and ineffectiveness, we need to acknowledge the reality that some children are more affected by their developmental experiences — from harsh punishment to high-quality day care — than others. This carries implications for scientists evaluating interventions, policy makers funding them and parents rearing children.

The last phrase is particularly problematic. IF we can determine a childs’s responsiveness to developmental experiences through a genetic test, are we ready to include such a test as part of the initial pediatric screening? I’ll leave you with that question to ponder….

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