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.

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.

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
Laura Torgerson, M.Sc., Research Associate

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Publications

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Into the Wild: The Real-Life Impact of Psychiatric Genetics. World Congress of Psychiatric Genetics; Virtual. Davis L, Degenhardt F, Peay H, Lencz T,
Crepaz-Keay D, Sabatello M, Lázaro-Muñoz G (2020)

Return of Results in Psychiatric Genomics Research: Perceptions of Best Practices in a Global Sample of Psychiatric Genetics Researchers. American Society for Bioethics and Humanities Annual Meeting; Virtual. Lázaro-Muñoz G, Torgerson L, Pereira S (October 2020.)

Return of Results from Psychiatric Genomics Research: Current Practices and Attitudes in a Global Sample of
Psychiatric Genetics Researchers. ELSI Congress 2020; New York, NY. (accepted/in-person meeting canceled: COVID-19). Lázaro-Muñoz G, Torgerson L, Kostick K, Pereira S.

Researchers’ Moral Attitudes towards Returning Individual Results in Psychiatric Genetics. American
Society for Bioethics and Humanities Annual Meeting
;
Pittsburgh, PA. Kostick K, Torgerson L, Pereira S, Lázaro-Muñoz G (October 2019).

Ideal Practices for Return of Results from Psychiatric Genetics Research. American Society for Bioethics and Humanities Annual Meeting; Pittsburgh, PA. Kostick K, Togerson L, Pereira S, Lázaro-Muñoz G (October 2019).

Psychiatric Genomics Researchers’ Practices and Perspectives on Individual Return of Results. Columbia
University. New York, NY. Lázaro-Muñoz G (2019).

Genetic Differential Diagnosis in Highly Treatment Resistant Schizophrenia. Schizophrenia International Research Society; Orlando, FL. Farrell M, Lichtenstein M,
Crowley JJ, Filmyer D, Lázaro-Muñoz G, Shaughnessy R, Halvorsen M, Dietterich T, Bruno L, Harner M, Berg J, Szatkiewicz J, Josiassen R, Sullivan PF (2019).

Integrating Psychiatric Genomics into Clinical Care: Ethical and Legal Challenges for Clinicians. Sheppard Pratt Health System; Baltimore, MD. Lázaro-Muñoz G (2019).

Study Group on Ethical Aspects of Genetic Testing. American College of Neuropsychopharmacology
57th Annual Meeting
; Hollywood, FL. Smoller J, Cook E, Austin J, Lázaro-Muñoz G, Esser D, Appelbaum
P (2018).

Maximizing Benefits and Minimizing Harms of Genomic Technologies. NASA Precision Medicine Workshop; Johnson Space Center, Houston, TX. Lázaro-Muñoz G (2018).

Responsible Research and Translation of Psychiatric Genomics. World Congress of Psychiatric Genetics; Glasgow, SCT. Lázaro-Muñoz G (symposium chair and discussant; 2018).

Psychiatric Genomics Researchers’ Concerns about Offering Return of Results to Individual Participants. World Congress of Psychiatric Genetics; Glasgow, SCT. Kostick KM, Brannan C, Pereira S, Lázaro-Muñoz G (2018).

Genome Editing in the Context of Mental Health Disorders. World Congress of Psychiatric Genetics; Glasgow, SCT. Soda T, Grafton A, Farrell M, Giusti-Rodriguez P, Lázaro-Muñoz G (2018).

Researchers’ Attitudes towards Return of Results in Psychiatric Genomics Research. American Society for Bioethics and Humanities Annual Meeting; Anaheim, CA. Kostick KM, Brannan C, Pereira S, Lázaro-Muñoz G
(2018).

Population-based Screening for Psychiatric Risk Biomarkers: Ethical, Legal, and Social Implications. American Society for Bioethics and Humanities Annual Meeting; Anaheim, CA. Brannan C, Foulkes AS, Lázaro-Muñoz G (2018).

Managing Return of Results in Genomics Research: Early lessons from psychiatric genetics research. Hispanic Community Health Study / Study of Latinos (HCHS/SOL) Genomic Reporting Committee; teleconference. Lázaro-Muñoz G (2018).

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. Lázaro-Muñoz G (2018).

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

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

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. Lázaro-Muñoz G (2017).

Framework for the Return of Results to Psychiatric Genomics Research Participants: What Should Be Offered? World Congress of Psychiatric Genetics; Jerusalem, Israel. Lázaro-Muñoz G, Farrell MS, Ward ET, Iglesias de Ussel MD, Filmyer DM, Finkel G, Crowley JJ,
Shaughnessy RA, Josiassen RC, Sullivan PF (2016).

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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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