Genetics and Responsibility: More Complicated Than We’d Thought
Watch the recordings of the symposium here
By Erik Parens, PhD and Paul S. Appelbaum, MD
In 1991, sociologist Abby Lippman proposed the geneticization thesis, i.e., that “genetic science [would] lead to many aspects of identity, health, and everyday life being explained in genetic terms.” At our recent virtual symposium, “Do genetic findings have an impact on perceptions of responsibility?” sponsored by the Center for Research on Ethical, Legal, and Social Implications of Psychiatric, Neurologic & Behavioral Genetics at Columbia, in collaboration with The Hastings Center, we found a far more complex picture than the one imagined in early interpretations of the geneticization thesis. Yes, genetic information can have impacts on individuals—in some cases significant ones. But individuals also can actively—and strategically—use genetic information to advance their own purposes.
The conversation about the impacts of genetic information on perceptions of responsibility is complicated because, as philosopher Silke Schicktanz put it, the term responsibility is deployed in ways that are “vague and ambiguous.” Schicktanz identified six facets of responsibility.
First, who is “the subject” of the responsibility? That is, who or what is responsible for a given act? Second, what is the “temporal” dimension of the action for which some subject is said to be responsible? Or as one of us (PA) asked, are we evaluating a claim about what someone is responsible for having done or what someone is responsible to do in the future? Third, one must consider “the object” toward which the subject has a responsibility. Fourth, which “norms” inform the idea that a responsibility exists, e.g., bioethical principles, laws, or regulations. Next, who is the “authority” asserting the existence of the responsibility? Finally, what are “the consequences” of fulfilling the responsibility or failing to? It is not difficult to discern the relevance of those six facets to the three primary contexts we discussed: (i) explaining the causes of disorders; (ii) detecting prenatal anomalies; and (iii) levying criminal sentences.
In the first context, we asked about the impacts of sharing genetic information that purports to diagnose or predict risk for a disorder. Paul Appelbaum offered some evidence that could be “good news”: when parents of children with autism are told that their children carry a causative genetic variant, they report feeling less “responsibility for” their child’s condition and a greater sense of “responsibility to” act to advance autism genetics research.
Psychologist Woo-Kyoung Ahn, on the other hand, offered “bad news.” She and her colleagues discovered that when people are told they carry a genetic variant for depression they become pessimistic about the likelihood of successful treatment and report more depressive symptoms. Moreover, when people are told that they do not carry risk variants for a trait such as obesity, such information can produce a “genetic invincibility” effect: a false view that their genes immunize them against obesity—and presumably diminish their responsibility for their own health.
Our symposium also considered the impact of genetic information in the prenatal context. As Stina Lou explained, even in Denmark, where support for people with disabilities is generous and healthcare is free, 90% of pregnant people told they carry a fetus with Down syndrome decide to abort. Although her commitment to the right to abortion is absolute, she is equally committed to helping pregnant people recognize that they do not have a “responsibility to” abort, and that they do have a “responsibility to” make fully informed decisions, which includes becoming aware of how ableism can obscure understanding.
Lawyer and bioethicist Kim Mutcherson agreed with Lou that women need the space and support to make responsible decisions, but emphasized how that space is shaped by the intersection of race, class, gender—and by national history and culture. Insofar as pregnancy in the U.S. does not confer access to adequate prenatal care or adequate social supports for raising a child—much less to a free, safe, and legal abortion—it is exceedingly difficult to generalize about what constitutes a responsible decision for a White woman in Denmark and a Black woman in the U.S.
At the conference we briefly discussed a third context in which the term responsibility is deployed: levying sentences for criminal behavior. Contrary to what might have been predicted based on the geneticization hypothesis, according to research by one of us (PA) and Nicholas Scurich, telling people that a criminal was genetically predisposed to their behavior did not impact perceptions of “responsibility for” the behavior or the sentences selected. As Katie Tabb urged us to remember, however, we don’t actually know the right answers to questions such as, “What ought to be the impact of genetic information on levying sentences?” As Tabb put it, the right answers to normative questions won’t ever “fall out of the empirical data.”
In research Appelbaum did with Tabb and Matt Lebowitz, they discovered an asymmetry between how people evaluate negatively and positively valenced behaviors. Whereas there is a tendency for lay people to reject genetic explanations of antisocial (including criminal) behaviors, there is also a tendency to accept genetic explanations of prosocial behaviors (such as helping a stranger in distress). Such an asymmetry is consistent with Larisa Heiphetz’s reminder of how complexly motivated our behaviors are. It is possible, for example, that a desire to punish others is one factor that helps to explain why people discount genetic explanations of criminal behaviors. And, as Heiphetz pointed out in a different context, the complexity of those motivations should make us cautious about too quickly assuming that education about the real role of genetics in the causation of our behaviors is going to help people interpret genetic information in the way we think they should.
Paul Martin, a speaker at our symposium and co-author of a 2017 paper that announced the demise of the geneticization thesis, explained that that sociological thesis depended on the scientific hypothesis that single genes could cause common diseases. According to Martin and his coauthors in 2017, as that hypothesis became increasingly untenable, the geneticization thesis lost its explanatory power. However, at our symposium Martin argued that the presumed demise of the geneticization thesis was premature. He based his new claim on advanced sequencing technologies that can increasingly identify rare variants to explain rare diseases and argued that a new norm is emerging for human beings having a right to—and a responsibility to pay for—the fabulously expensive therapies for these diseases.
As symposium moderator Lucas Matthews and others were quick to point out, however, there is ongoing interest in common diseases and behaviors, informed by a very different polygenic hypothesis. Indeed, many people at our event, including philosopher Lisa Parker and sociologist Carlos Novas, expressed concern that sequencing technologies are contributing to a process where individual human beings are taken to be responsible for their health status, including steps to preserve or restore it.
For now, we can recognize how the scope of the original description of geneticization was exaggerated—without succumbing to the temptation to wholly reject it. It is a much more complicated picture than Lippman sketched, but also a much more interesting one.
