As a human geneticist, I have always been interested ethical behavior, i.e. in how each individual patient might agree to undergoing a particular “genetic test” versus refusing to have such a test — based on many factors (age, gender, trait being examined for, education, ethnicity, etc.). The attached article (coauthored by eight behavioral scientists from various universities around the U.S.) summarizes what they believe we should consider as ethical challenges (barriers) and potential actions to take, in order to hasten integration of clinical genetics and genomics with behavioral medicine.
Authors believe that behavioral medicine and related work in the communication, behavioral, and social sciences — is well equipped to help address these challenges. Decision science, for example, has produced abundant evidence that human decision-making is not as unpredictable as it might appear, but rather is driven by several core principles (e.g. the desire to pursue the minimum satisfactory condition or outcome, when faced with complex choices). It is certainly true that patients bring many different emotions and motivations to settings where they are making sense of, or making decisions regarding, health information.
In one genomic-sequencing cohort study cited by the authors, participants who had been expected to become distraught in response to unwelcome genetic feedback were, in turn, less likely to seek those results; however, this pattern did not occur among individuals who tended to focus on personal values and strengths in the context of threat. Findings such as these only scratch the surface of understanding the panoply of psychological constructs driving a person’s engagement with genetic information.
One central question is the extent to which access to genetic information might influence behavior — particularly behaviors (e.g. consenting to screening, making lifestyle changes, and adhering to treatments) that reduce the effects of genetic risk. So far, evidence of such an effect across a range of behaviors has been mixed; one meta-analysis suggested little to no effect, whereas another provided more promising evidence. In general, this literature is only in its infancy and is based largely on communication of single-gene results in mostly homogeneous populations.
Whether genetic risk information influences behavior and decision-making is also only part of the story — behavioral medicine can help us understand how, when, and why it might have such an effect. Moving from the individual to the population, the promises of precision medicine and population health — rely squarely on the ability to enable broad and sustainable access within complex health systems to genomics informed innovation. Implementation science frameworks offer a roadmap for interdisciplinary considerations of the important technical and contextual factors required to shape dissemination accordingly. Various data from previous genetics and genomics research are perfect examples of medical advancements ripe for the application of research on human behavior.
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Am J Hum Genet Feb 2019; 104: 193–196