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

Abstract

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.

Applicability and usefulness of the Declaration of Helsinki for forensic research with human cadavers and remains

“…Research involving HC&R may also imply several risks with regard to data protection, especially in the case of identifiability of the body or specimens [ 17 ], and when genetic testing is involved [ 7 ]. Therefore, the research protocol should address risks for the deceased individual’s privacy, detailing how confidentiality will be assured, as well as risks for family members or ethnic groups in the case of genetic testing.…”

“…Forensic research applies several methods to many different types of research that may involve human subjects, human material obtained from either living persons or dead persons, including the whole body, and personal data. In particular, the use of human cadavers and remains (hereinafter HC&R), or their specimens (i.e., organs, bones, tissues, or biological samples), is essential for advancement in forensic research [ 1 ] but may raise ethical concerns [ 1 – 7 ]. Indeed, as suggested by Jones and Whitaker [ 8 ] “the manner in which we respond to the dead, the use we make of their skeletal remains and their tissues, and the ways in which we learn about ourselves by studying them, raises ethical queries that go to the heart of what it means to be human.” Accordingly, forensic doctors and assistants have reported that the dignity of the body is a central issue in everyday forensic professional practice [ 9 ].…”

Principles of Correlation Between Self-Regulation and State Legal Regulation of the Relations Related to Genetic Research: Modern Prospects

“…Paola Bin, Adelaide Conti, Emanuele Capasso, Piergiorgiofedeli, Fabio Polichino, Claudia Casella, Paola Delbón, Vincenzo Graziano dealt with the issues of genetic testing and legislative regulation of this area. The work of Shade, Jess I. Kuhn, Hilary I. Doherty, Anna [6] about ethical consequences of using biobanks and population databases for genetic research of suicides is of great interest. Many experts studied this topic, but the development of principles related to the correlation between the government regulation and self-regulation of legal relations in the area of genetic research has not been studied and requires a comprehensive analysis because the principles of the correlation between government regulation and self-regulation in the area of genetic development will allow to regulate these legal relations when the legislation in this area has been underdeveloped.…”

“…Based on the comparative analysis of the state legal regulation of the cases when the disclosure of genetic information against the patient's will is allowed in order to protect the interests of third parties, it is possible to conclude that the exemption from the confidentiality principle is allowed taking into account such factors as the seriousness of the detected disease or genetic disorder, the availability of efficient treatment or preventive measures in relation to the pathology under consideration, and a confirmed degree of the diagnosis reliability [6].…”

The need for attention to the ethical, legal, and social implications of advances in psychiatric genomics

“…Shade and colleagues () examine many of the regulatory obstacles and ethical challenges of studying genetic correlates of suicide. These are critical issues that need to be addressed because, as the authors note, almost 800,000 people die of suicide every year, and suicide rates among adolescents are growing at an alarming rate.…”