In the last third of the twentieth century, humanists and social scientists argued that attention to genetics would heighten already‐existing genetic determinism, which in turn would intensify negative social outcomes, especially sexism, racism, ableism, and harshness to criminals. They assumed that laypeople are at risk of becoming genetic essentialists. I will call this the “laypeople are genetic essentialists model.” This model has not accurately predicted psychosocial impacts of findings from genetics research. I will be arguing that the failure of the (...) model can be traced to its inability to recognize the complexity of laypeople’s attitudes; its incorrect theory of how beliefs, attitudes, and discourse function; and its blindness to how academics’ own interests can override the available evidence. More specifically, I suggest that the substantial data about laypeople’s deployment of genetics supports what I will call the “laypeople are strategic essentialists model” better than the “laypeople are genetic essentialists model.” The strategic essentialists model holds that people tend to store multiple categories, including multiple causal forces, that they deploy “strategically” to serve context‐dependent goals. It will be difficult for academics to reorient ourselves to model laypeople as sophisticated strategic essentialists rather than as naïve genetic essentialists. Perhaps a little shift, however, will be of value. (shrink)

Since the start of the program to investigate the ethical, legal, and social implications (ELSI) of the Human Genome Project in 1990, many ELSI scholars have maintained that genetic testing should be used with caution because of the potential for negative psychosocial effects associated with receiving genetic information. More recently, though, some ELSI scholars have produced evidence suggesting that the original ELSI concerns were unfounded, exaggerated, or, at a minimum, misdirected. At least in the contexts that have been most studied, (...) large negative impacts have not been found in the vast majority of people studied. What might explain the discrepancy between the original hypothesized outcomes and the growing impression that large negative effects appear to be few and far between? And if the original predictions of large negative psychosocial effects were simply wrong, is it time for ELSI researchers to move on? Should genetic testing be routinized, and would it be appropriate to relax or abandon the practice of engaging patients in a process of detailed informed consent before they receive genetic information? To confront those questions, we convened a conference entitled “Looking for the Psychosocial Impacts of Genomic Information” to review what is known about the negative impacts of genetic information on a variety of populations and in multiple medical and social contexts, to explore the implications of the findings, and to consider whether future research might benefit from different methods than have been used to date. (shrink)

Optimistic predictions that genetic and genomic testing will provide health benefits have been tempered by the concern that individuals who receive their results may experience negative psychosocial outcomes. This potential ethical and clinical concern has prompted extensive conversations between policy‐makers, health researchers, ethicists, and the general public. Fortunately, the psychosocial consequences of such testing are subject to empirical investigation, and over the past quarter century, research that clarifies some of the types, likelihood, and severity of potential harms from learning the (...) results of the testing has accumulated. I aim to provide an overview of the findings of this research by looking at selected systematic reviews. This will convey the gist of the literature’s quality and coverage, reveal gaps in existing knowledge, and highlight promising areas for future scholarship. (shrink)

Since the inception of large‐scale human genome research, there has been much caution about the risks of exacerbating a number of socially dangerous attitudes linked to human genetics. These attitudes are usually labeled with one of a family of genetic or genomic “isms” or “ations” such as “genetic essentialism,” “genetic determinism,” “genetic reductionism,” “geneticization,” “genetic stigmatization,” and “genetic discrimination.” The psychosocial processes these terms refer to are taken to exacerbate several ills that are similarly labeled, from medical racism and psychological (...) fatalism to economic exploitation and social exclusion. But as genomic information becomes more familiar in clinical and research settings as well as other life activities, do we need to continue to worry so much about this family of attitudes and their impact on existing problems?In genomics, the underlying anxiety has been that disclosure of genomic information will trigger a series of (seemingly unavoidable) negative responses that will affect individuals, their families, and their communities at large. The fundamental social challenges that hyperbolic genomic messaging, low genomic literacy, and “folk biology” help sustain remain to be addressed. If we hope to break the cycle of genomic isms and ations, we will have to get better at resisting overinterpretations of the relevance that genomics has for people’s future potentials, ancestral vulnerabilities, community memberships, and ethnic affiliations. (shrink)