Ethical Considerations and Risks in Psychiatric Genetics: Preliminary Findings of a Study on Psychiatric Genetic Researchers

Abstract

Background: There are high expectations for genetic research on psychiatric disorders. In addition to anticipating potential benefits, it is important to be aware of risks and ethical concerns. Previous studies have explored attitudes of various stakeholder groups toward psychiatric genetics research and testing. This study focuses on potential risks and ethical concerns as perceived by a hitherto untargeted stakeholder group: psychiatric genetic researchers. Methods: Thirty experts in psychiatric genetic research on schizophrenia, bipolar disorder (BP), and/or major depressive disorder (MDD) were interviewed and asked about their current research. Questions dealt with researchers’ beliefs about potential benefits, harms, and ethical concerns that could result from their work, as well as suggestions to ethically implement their research into clinical practice. Results: Respondents mainly discussed six ethical issues: (1) stigma; (2) prenatal testing and eugenics; (3) ethics of genetics research; (4) lack of genetic risk education among the general public and health care professionals; (5) premature commercialization and direct-to-consumer testing; and (6) lack of criteria for when to utilize psychiatric genetic tests. Bipolar and MDD genetic researchers were somewhat more likely to include moral arguments against psychiatric prenatal testing in their responses than schizophrenia researchers. Non-U.S. respondents were more likely to mention social discrimination concerns than U.S. respondents. Conclusions: Psychiatric genetic researchers’ viewpoints contribute a knowledgeable perspective about the capabilities and risks of psychiatric genetics research. Researchers were concerned that expectations of genetics precede the availability of valid and reliable psychiatric genetic tests. Psychiatric genetic researchers insisted that clinical validity is still a long way away and that making important life decisions based on current data poses a significant danger.

Keywords:

• ethical concerns
• psychiatric disorders
• psychiatric genetic researchers
• risks

Acknowledgments

This study was supported by NIH grant P50 HG003389.

Notes

Genetic essentialism is the view that DNA determines a person's identity (Fleising 2001).