Next Article in Journal
Impact of Bisphenol A on the Cardiovascular System — Epidemiological and Experimental Evidence and Molecular Mechanisms
Next Article in Special Issue
Longitudinal Trajectories of Cholesterol from Midlife through Late Life according to Apolipoprotein E Allele Status
Previous Article in Journal
Utility and Cutoff Value of Hair Nicotine as a Biomarker of Long-Term Tobacco Smoke Exposure, Compared to Salivary Cotinine
Previous Article in Special Issue
Genetic Epidemiology and Preventive Healthcare in Multiethnic Societies: The Hemoglobinopathies
Int. J. Environ. Res. Public Health 2014, 11(8), 8383-8398; doi:10.3390/ijerph110808383

Practical Barriers and Ethical Challenges in Genetic Data Sharing

1,* , 2
Jr. 5
Received: 1 August 2014 / Accepted: 12 August 2014 / Published: 15 August 2014
(This article belongs to the Special Issue Genetic Epidemiology)
View Full-Text   |   Download PDF [560 KB, 19 August 2014; original version 15 August 2014]


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 data sharing; identifiability; GWAS; ELSI; ethics; publication embargo; collaboration
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Share & Cite This Article

Further Mendeley | CiteULike
Export to BibTeX |
MDPI and ACS Style

Simpson, C.L.; Goldenberg, A.J.; Culverhouse, R.; Daley, D.; Igo, R.P., Jr.; Jarvik, G.P.; Mandal, D.M.; Mascalzoni, D.; Montgomery, C.G.; Pierce, B.L.; Plaetke, R.; Shete, S.; Goddard, K.A.B.; Stein, C.M. Practical Barriers and Ethical Challenges in Genetic Data Sharing. Int. J. Environ. Res. Public Health 2014, 11, 8383-8398.

View more citation formats

Related Articles

Article Metrics

For more information on the journal, click here


Cited By

[Return to top]
Int. J. Environ. Res. Public Health EISSN 1660-4601 Published by MDPI AG, Basel, Switzerland RSS E-Mail Table of Contents Alert