Powerful Perceptions of Genetic Information

AbstractResearchers who focus on the ethical, legal, and social implications (ELSI) of genetics have tried to anticipate and mitigate the unique risks of genetic testing. To that end, ELSI scholars have focused on the unique predictive power and the subtle ambiguities of genetic test results. Much of this work has assumed that genomic results accurately predict future health problems and has considered the implications of these accurate predictions for the benefits and harms that may result from access to such test results. In this article, we consider a different type of risk-a type of exceptionalism we term "genetic bias." Genetic bias occurs when genomic results have uncertain implications but are perceived as more accurate and accurately predictive than is warranted. Such bias can lead to inappropriate clinical decisions. Specifically, if the genomic results are thought to be more definitive than they really are, they may lead to undue limitations in care. We explore genetic bias through the lens of neonatology, where burgeoning use of genetic testing routinely impacts everyday medical decision-making. Our concerns are supported by preliminary evidence that both neonatologists and parents harbor genetic biases. We examine the implications of this bias and suggest ways that the detrimental effect of such biases could be mitigated.