Ethical implications of using biobanks and population databases for genetic suicide research

• Published in: American journal of medical genetics. Part B, Neuropsychiatric genetics Vol. 180; no. 8; pp. 601 - 608
• Main Authors: Shade, Jess, Coon, Hilary, Docherty, Anna R.
• Format: Journal Article
• Language: English
• Published: Hoboken, USA John Wiley & Sons, Inc 01.12.2019; Wiley Subscription Services, Inc
• Subjects: Autonomy; Autopsy; Biological Specimen Banks - ethics; Confidentiality; Databases, Genetic - ethics; epidemiology; Ethics; federal policy; Genetic Research; Genetics; HIPAA; Humans; Personal Autonomy; Population genetics; Population studies; Principles; Privacy; Public Health; Suicide; Suicide - ethics; Suicide - psychology; Suicide Prevention; United States; United States; federal policy; epidemiology; genetics; ethics; HIPAA; suicide
• ISSN: 1552-4841; 1552-485X; 1552-485X
• DOI: 10.1002/ajmg.b.32718

This article provides a review of the ethical considerations that drive research policy and practice related to the genetic study of suicide. As the tenth cause of death worldwide, suicide constitutes a substantial public health concern. Biometrical studies and population‐based molecular genetic studies provide compelling evidence of the utility of investigating genetic underpinnings of suicide. International, federal, and institutional policies regulating research are explored through the lenses of the ethical principles of autonomy, beneficence, non‐maleficence, and justice. Trapped between the Common Rule's definition of human subjects, and the Health Insurance Portability and Accountability Act's protected information, suicide decedent data occupy an ethical gray area fraught with jurisdictional, legal, and social implications. Two avenues of research, biobanks and psychological autopsies, provide tangible application for the ethical principles examining the risks to participants and their families. Additionally, studies surveying public opinion about research methods, especially broad consent, are explored. Our approach of applying the four ethical principles to policy, sample collection, data storage, and secondary research applications can also be applied to genetic research with other populations. We conclude that broad consent for secondary research, as well as next‐of‐kin at the time of autopsy, serve to satisfy privacy and confidentiality under the ethical principle of autonomy. We recommend ongoing ethical evaluation of research policy and practice.