Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research
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ORIGINAL RESEARCH
Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research Julia Wynn & Josue Martinez & Jimmy Duong & Yuan Zhang & Jo Phelan & Abby Fyer & Robert Klitzman & Paul S. Appelbaum & Wendy K. Chung
Received: 9 April 2014 / Accepted: 26 December 2014 # National Society of Genetic Counselors, Inc. 2015
Abstract Whole exome/ genome sequencing (WES/WGS) is now commonly used in research and is increasingly used in clinical care to identify the genetic basis of rare and unknown diseases. The management of incidental findings (IFs) generated through these analyses is debated within the research community. To examine how views regarding genomic research IFs are associated with researcher characteristics and experiences, we surveyed genetic professionals and assessed the effect of professional background and experience on their opinions. Researchers who did not have clinical training, provide clinical care to research participants, or have prior experience returning research results were in general more inclined to offer return of IFs than their colleagues with these characteristics. Understanding this will be important to fully J. Wynn : J. Martinez : W. K. Chung Department of Pediatrics, Columbia University Medical Center, 1150 St. Nicholas Ave., Russ Berrie Pavilion, 6th Fl, Rm 620, New York, NY 10032, USA J. Wynn e-mail: [email protected] J. Duong : Y. Zhang Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, NY, USA J. Phelan Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, NY, USA A. Fyer : R. Klitzman : P. S. Appelbaum Department of Psychiatry, Columbia University Medical Center and NY State Psychiatric Institute, New York, NY, USA W. K. Chung (*) Department of Medicine, Columbia University Medical Center, 1150 St. Nicholas Ave., Russ Berrie Pavilion, 6th Fl, Rm 620, 10032 New York, NY, USA e-mail: [email protected]
appreciate the impact that policies on return of genetic IFs could have on participants, researchers, and genomic research. Keywords Genetics research . Genomics . Genomic results . Incidental findings . Return of results . Secondary findings . Whole exome sequencing
Introduction Whole exome/ genome sequencing (WES/WGS) is now commonly used in research and is increasingly used in clinical care to identify the genetic basis of rare and unknown diseases (Bainbridge et al. 2011; Need et al. 2012). Because of the comprehensive nature of WES/WGS, it has the possibility of identifying incidental findings—i.e., genetic variants or mutations unrelated to the disease of interest (Cassa et al. 2012; Kohane et al. 2006; Wolf et al. 2008). Whether and which incidental findings should be returned to research participants is now being debated within the genetics community (Green et al. 2012; Jewell 2012; Klitzman et al. 2013; Lemke et al. 2013; Lohn et al. 2013; Townsend et al. 2012), in part stimulated by the release of the ACMG guidelines mandating return o
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