Anti-Genetic Exceptionalism in Complex Disorders: Making a Case for Disclosure of Polymorphic Genetic Results in Clinical Research Studies

It is increasingly common for clinical research studies to include a genetic component. In complex genetic disorders, disease is associated with variation in many genes, each of which contributes only a small, discrete effect. The nature of the genetic information generated by such studies increasingly necessitates re-examination of the ethical precepts underlying their research questions, study designs, and disclosure practices. This article addresses the ethical basis for decisions whether to disclose the results of testing for polymorphic genetic variation to individual research participants, who often express great interest in knowing “Do I have the gene?” The paper argues that information about polymorphic genetic variation is unexceptional when compared to other data commonly collected in clinical research studies, such as age, blood pressure readings, or family history. This lack of exceptionalism should be considered in the procedures for disclosure in research studies of complex disorders involving polymorphic genetic variation.