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

Abstract

2020 marks the 30th anniversary of the ethical, legal, and social implications (ELSI) of genetics field. ELSI as a field arose out of concerns for potential misuses of genetic information (e.g., genetic discrimination) based on the knowledge and technologies that would emerge with the Human Genome Project. Arguably, psychiatric genomics is one of the areas of genomics inquiry with the greatest need for attention to ELSI. Historically, many of the “phenotypes” targeted by eugenics movements, including euthanasia and sterilization programs, were behaviors and symptoms considered heritable and often associated with psychiatric disorders: “feeblemindedness,” “insanity,” and “imbecility,” among others. Eugenic policies were often built on purposeful misinterpretation of emerging scientific knowledge and pseudoscience to advance certain agendas. The lessons of the past are present in our collective memory, and through regulations and codes of ethics regarding the conduct of research and medical care. However, as the field of psychiatric genomics continues to make remarkable progress in uncovering the genetic architecture of psychiatric disorders, novel ethical issues emerge (e.g., how to manage return of results in research, how to manage polygenic risk scores, how to maximize the diversity of samples and minimize health inequalities, how to responsibly translate research into clinical care). Furthermore, there will always be those willing to misuse emerging scientific knowledge to advance misguided agendas. Thus, it is not only critical to conduct psychiatric genomics research in a responsible way but also to be attentive to how the research is interpreted and applied in order to promote beneficial translation and minimize potential misuses. The articles in this special issue illustrate the many ways in which attention to ELSI issues and empirical ELSI research can promote the responsible development of psychiatric genomics research and its translation. These articles also show how ELSI work related to psychiatric genetics is an international endeavor with authors from more than 15 countries. Three of these articles present international efforts to address ELSI issues related to psychiatric genetics research and translation. Moldovan and colleagues (2019) examine the current state of psychiatric genetic counseling around the world and the importance of expanding training and access to these services. Importantly, they note that psychiatric genetic counseling is not only useful when a genetic test is conducted but also to help patients understand and manage the implications of genetic contributions to mental health. Kong and Singh (2019) discuss the Oxford Global Initiative in Neuropsychiatric GenEthics (NeuroGenE) approach to examining the ethical and policy challenges of psychiatric genetics research and translation in a global context with a special emphasis on lowand middle-income countries. They identify five helpful stages of research and four principles that guide their approach and can serve as a model for others interested in examining ethical and policy implications of emerging technologies in different cultural and economic settings. The recently created Ethics Committee of the International Society of Psychiatric Genetics (Lázaro-Muñoz et al., 2019) examines the importance of increasing the involvement of psychiatric genetics researchers in addressing ELSI issues. They also examine a number of pressing psychiatric genomics ELSI issues in need of study and action such as: the diversity of samples, return of results in psychiatric genomics research, stakeholder engagement, the integration of psychiatric genetics in clinical settings, and the use of psychiatric genetics in legal proceedings. Strohmaier and colleagues (2019) examine the attitudes of patients with a psychiatric disorder and their relatives concerning autonomous decision making for genetic testing. The findings stress the importance of being nuanced when evaluating preferences regarding whether to conduct genetic testing, return results, and disclose results to third parties. The authors argue that in order for patients to be in control of their data they need to understand the potential positive and negative implications of genetic testing, and that preferences and implications can be context-dependent. Adlington and colleagues (2019) examine challenges related to improving access to genetic testing for adults with intellectual disabilities. First, the authors address the utility of genetic testing in this group and some of the ethical challenges associated with testing patients with intellectual disabilities. The authors also describe an ongoing project that offers genetic testing to patients with intellectual disabilities in the United Kingdom. This project employs a quality improvement methodology and the authors present early outcomes and lessons. Lenk and colleagues (2019) present a comprehensive survey study on the perceptions and evaluations of multiple stakeholder groups including patients and health care staff regarding the right to know and the right not to know genetic information. The authors come to the conclusion, that genetic information is highly valued by Received: 16 October 2019 Accepted: 16 October 2019