Practical Barriers and Ethical Challenges in Genetic Data Sharing

Claire L. Simpson, Aaron J. Goldenberg, Rob Culverhouse, Denise Daley, Robert P. Igo, Gail P. Jarvik, Diptasri M. Mandal, Deborah Mascalzoni, Courtney Gray Montgomery, Brandon L. Pierce, Rosemarie Plaetke, Sanjay Shete, Katrina A. B. Goddard and Catherine M. Stein
Additional contact information
Claire L. Simpson: Computational and Statistical Genomics Branch, National Human Genome Research Institute, Baltimore, MD 21224, USA
Aaron J. Goldenberg: Department of Bioethics, Case Western Reserve University, Cleveland, OH 44106, USA
Rob Culverhouse: Department of Internal Medicine, Washington University in St. Louis, St. Louis, MO 63110, USA
Denise Daley: Department of Medicine, University of British Columbia, Vancouver, BC V6Z 1Y6, Canada
Robert P. Igo: Department of Epidemiology & Biostatistics, Case Western Reserve University, Cleveland, OH 44106, USA
Gail P. Jarvik: Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington, Seattle, WA 98195, USA
Diptasri M. Mandal: Department of Genetics, Louisiana State University Health Sciences Center, New Orleans, LA 70112, USA
Deborah Mascalzoni: EURAC Institute of Genetic Medicine, Bolzano 39100, Italy
Courtney Gray Montgomery: Oklahoma Medical Research Foundation, Oklahoma City, OK 73104, USA
Brandon L. Pierce: Department of Health Studies, University of Chicago, Chicago, IL 60637, USA
Rosemarie Plaetke: Department for Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany
Sanjay Shete: UT MD Anderson Cancer Center, Houston, TX 77030, USA
Katrina A. B. Goddard: Center for Health Research, Kaiser Permanente Northwest, Portland, OR 97227, USA
Catherine M. Stein: Department of Epidemiology & Biostatistics, Case Western Reserve University, Cleveland, OH 44106, USA

IJERPH, 2014, vol. 11, issue 8, 1-16

Abstract: The underlying ethos of dbGaP is that access to these data by secondary data analysts facilitates advancement of science. NIH has required that genome-wide association study data be deposited in the Database of Genotypes and Phenotypes (dbGaP) since 2003. In 2013, a proposed updated policy extended this requirement to next-generation sequencing data. However, recent literature and anecdotal reports suggest lingering logistical and ethical concerns about subject identifiability, informed consent, publication embargo enforcement, and difficulty in accessing dbGaP data. We surveyed the International Genetic Epidemiology Society (IGES) membership about their experiences. One hundred and seventy five (175) individuals completed the survey, a response rate of 27%. Of respondents who received data from dbGaP (43%), only 32% perceived the application process as easy but most (75%) received data within five months. Remaining challenges include difficulty in identifying an institutional signing official and an overlong application process. Only 24% of respondents had contributed data to dbGaP. Of these, 31% reported local IRB restrictions on data release; an additional 15% had to reconsent study participants before depositing data. The majority of respondents (56%) disagreed that the publication embargo period was sufficient. In response, we recommend longer embargo periods and use of varied data-sharing models rather than a one-size-fits-all approach.

Keywords: data sharing; identifiability; GWAS; ELSI; ethics; publication embargo; collaboration (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2014
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