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Center for Medical Ethics and Health Policy

Return of Results from Psychiatric Genomics Research: Attitudes and Barriers

Master
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Project Description

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Genomic analysis (genome/exome sequencing and array-based measures) is helping uncover the genetic architecture of psychiatric disorders. Nevertheless, genomic testing raises complex challenges for investigators. A critical one is how to manage the increasing amount of clinically relevant findings these technologies can generate.

Over the past decade, hundreds of thousands of individuals have participated in psychiatric genomics research and in upcoming years, millions will participate in this type of research. Psychiatric genomics research has the potential to generate clinically relevant information for participants and their biological relatives.

In other areas of genomics, there is an emerging consensus that researchers should offer to return clinically relevant findings to participants. CRFs could—immediately or in the future—impact participants’ health care by facilitating prevention, diagnosis, treatment selection, or a more comprehensive understanding of the pathogenesis of a participant’s symptoms. However, psychiatric genomics researchers rarely offer to return any kind of individual result to participants.

The return of results is particularly challenging for psychiatric genomics researchers given the lack of history and ethical guidelines for offering to return results in this field, the still emerging understanding of the genetic architecture of psychiatric disorders, their multifactorial nature, and the multinational collaborations and large number of participants generally required to conduct this research. No empirical research has examined the unique challenges of returning results in the psychiatric context and no guidelines specific to PG research exist.

The long-term goal of our research program is to develop an ethically-justified and empirically-informed framework for offering to return clinically relevant findings to participants in PG research. The objective of this project, which is the first step in pursuit of that goal, is to examine the attitudes, perspectives, experiences, and perceived barriers of PG researchers as principal gatekeepers regarding the return and management of clinically relevant findings. We will examine these issues by conducting: 1) in-depth semi-structured interviews with psychiatric genomics researchers from different countries; and 2) based on the data collected from these interviews, developing a survey that will be administered online to a global sample of PG researchers to help us identify the most pressing barriers to the return of results in PG research and some potential solutions.

Supported by: R00HG008689, Grant funding from National Human Genome Research Institute of the National Institutes of Health

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Project Personnel

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Gabriel Lázaro-Muñoz, J.D., Ph.D., M.B.E., Principal Investigator
Stacey Pereira, Ph.D., Co-Investigator
Kristin Kostick, Ph.D., Research Associate
Cody Brannan, Research Coordinator

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Publications

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Lázaro-Muñoz G, Farrell MS, Crowley JJ, Filmyer DM, Shaughnessy RA, Josiassen RC, Sullivan PF. Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research. Molecular Psychiatry 23(1), 2018: 12-23.

Farrell M, Lichtenstein M, Crowley JJ, Filmyer DM, Lázaro-Muñoz G, Shaughnessy RA, Mackenzie I, Hirsch-Reinshagen V, Stowe R, Evans J, Berg J, Szatkiewicz J, Josiassen RC, Sullivan PF. (in press) Developmental delay, treatment-resistant psychosis, and early-onset dementia in a man with 22q11 deletion syndrome and Huntington’s Disease. American Journal of Psychiatry, 2017.

Lázaro-Muñoz G. Responsible Translation of Psychiatric Genetics and Other Neuroscience Developments: In Need of Empirical Bioethics Research. American Journal of Bioethics 17(4), 2017:33-35.

Char DS, Lázaro-Muñoz G, Barnes A, Magnus D, Deem, Lantos JD Genomic Contraindications for Heart Transplantation. Pediatrics 139(4), 2017:e20163471

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Presentations

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Lázaro-Muñoz G. Improved Ethical Guidance for the Return of Results from Psychiatric Genomics Research. Texas Children’s Hospital, Research Resources Office Seminar; Houston, TX. February 2018.

Lázaro-Muñoz G. Should Researchers Return Clinically Relevant Findings Generated in the Course of Psychiatric Genomics Studies? University of Puerto Rico, Río Piedras NEURO ID. San Juan, PR. February 2018.

Lázaro-Muñoz G. Harmonizing Return of Results Policies in International Psychiatric Genomics Research Collaborations. World Congress of Psychiatric Genetics. Orlando, FL. October 2017.

Lázaro-Muñoz G. The Need for Empirical Data When Examining the Neuroethics of Adaptive Deep Brain Stimulation (aDBS) Systems. International Neuroethics Society Meeting. Washington, DC. November 2017

Lázaro-Muñoz G. Improving Ethical Guidance for the Return of Results from Psychiatric Genomics Research. American Society for Bioethics and Humanities Annual Meeting. Kansas City, MO. October 2017.

Brannan C, Lázaro-Muñoz G.Predicting Schizophrenia and Protecting Against Undue Discrimination. American Society for Bioethics and Humanities Annual Meeting. Kansas City, MO. October 2017.

Fan RH, Lázaro-Muñoz G. Schizophrenia Risk Prediction and its Use in Schools and Universities American Society for Bioethics and Humanities Annual Meeting. Kansas City, MO. October 2017.

Lázaro-Muñoz G. Return of Results in Psychiatric Genomics Research: Challenges and Opportunities. University of North Carolina at Charlotte Center for Professional & Applied Ethics Speaker Series; Charlotte, NC.

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