Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern

Abstract

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.

What Is the Psychosocial Impact of Providing Genetic and Genomic Health Information to Individuals? An Overview of Systematic Reviews

“…Therefore, one might recommend pursuing other topics (for example, improved genetic-risk communication strategies, clinician training in genomics, and access to genetic services). I will note that the statements above apply only to psychological impacts; the scholarship on social impacts of genetic and genomic testing (such as articulated in this special report by Maya Sabatello and Eric Juengst as well as by Steven Heine and colleagues 40 ) has received less attention and systematic synthesis.…”

Thought Leader Comparisons of Risks in Precision Medicine Research

“…10 Although genomic data entail special features and important risks, 11 disproportionate emphasis on this aspect of the research in consent processes may reflect lingering genetic exceptionalism. 12 Our results suggest that evaluating and communicating other kinds of risks are at least equally important. Further, the likelihood of many of the risks and the severity of ensuing harms depend on study design decisions under the control of the investigator, as well as participant-level factors.…”

“…Notably, several interviewees who did not choose genomic data as riskiest anticipated that many others might. "I think many people would view the genomic risk as the greatest, because there is still a great deal of genetic exceptionalism, " stated one thought leader (12,Law). Among interviewees who did choose genomic data as riskiest, half characterized the associated risk as high (see figure 1).…”

Informed Consent for Genetic and Genomic Research

“…There are several aspects of genetic testing, both in the clinical and research contexts, that have led to a higher level of sensitivity for clinicians, patients, IRBs, ethicists, investigators, and perhaps the general public. Whether there are significant differences between genetic information and other types of biomedical information is a matter of a long-standing debate (Annas, Glantz, & Roche, 1995;Green & Botkin, 2003, Sabatello & Juengst, 2019. The tendency to view genetic information differently has been termed "genetic exceptionalism" (Murray, 1997).…”