Psychiatric genetic research (PGR) holds great promise for preventing, understanding, and treatingneuropsychiatric disorders - a source of immense societal burden and personal suffering. Such researchposes many ethical challenges, and failure to perform systematic study of the ethical issues surroundingPGR may threaten societal acceptance of this important scientific work. To date, NIH has not funded anywork on PGR that focuses on collecting empirical data about ethical issues. To remedy this gap, we willinvolve well-established, transdisciplinary collaborative researchers at two sites with a national ScientificAdvisory Board and a national Stakeholder Advisory Board to achieve 2 Aims: (1) to understand how 6 keystakeholder groups view important ethical considerations and safeguards in psychiatric genetic research,and (2) to develop and test a specific method for enhancing the research ethics skills of psychiatric geneticresearchers and institutional reviewers of research. In the Developmental Phase, we will conduct focusgroups with 100 lay stakeholders at Med Coll of Wisconsin & U of New Mexico SOM, and we will conductkey informant interviews with 20 professional stakeholders nationwide. To achieve Aim 1, we will conduct 2hypothesis-driven mainly quantitative surveys. Project 1 will used structured interviews to collect survey dataat both sites from 120 mentally ill people, 120 family members of people with mental illness, and 120 healthypeople. Project 2 will be a national Web-based survey of 120 psychiatric genetic investigators, 120 IRBleaders, and 120 IRB members. Both empirical survey projects will assess ethical issues in psychiatricgenetic research, emphasizing participant-oriented safeguards (i.e., consent, confidentiality, & geneticcounseling) & investigator- and institutional-oriented safeguards (i.e., institutional review, conflict of interestmanagement, tissue/sample retention, & community consent). To achieve Aim 2, we will perform arandomized controlled trial to evaluate a Web-based ethics educational module to enhance 80 researchers'and 160 research reviewers' abilities to identify, analyze, and manage PGR ethics issues. We suggest thatevidence-based ethics inquiry for PGR will displace bias and fear in shaping scientific practices and publicpolicy. Our proposed endeavor will generate new knowledge for wide dissemination and publication that caninform future evidence-based PGR ethics guidelines and generate further empirical ethics research on PGR.
| Roberts, Laura Weiss; Tsungmey, Tenzin; Kim, Jane Paik et al. (2018) Views of the importance of psychiatric genetic research by potential volunteers from stakeholder groups. J Psychiatr Res 106:69-73 |
| Roberts, Laura Weiss; Dunn, Laura B; Kim, Jane Paik et al. (2018) Perspectives of psychiatric investigators and IRB chairs regarding benefits of psychiatric genetics research. J Psychiatr Res 106:54-60 |
| Roberts, Laura Weiss; Kim, Jane Paik (2017) Receptiveness to participation in genetic research: A pilot study comparing views of people with depression, diabetes, or no illness. J Psychiatr Res 94:156-162 |
| Ngui, E M; Warner, T D; Roberts, L W (2014) Perceptions of African-American health professionals and community members on the participation of children and pregnant women in genetic research. Public Health Genomics 17:23-32 |
| Ngui, Emmanuel M; Khasakhala, Lincoln; Ndetei, David et al. (2010) Mental disorders, health inequalities and ethics: A global perspective. Int Rev Psychiatry 22:235-44 |
