Considering the Benefits and Risks of Research Participants' Access to Sequence Data.

Journal Article (Editorial)

The use of sequencing technologies has greatly expanded in both research and clinical settings. The generation of voluminous datasets has raised several issues regarding data sharing and access. Current regulations require clinical laboratories and some research laboratories to provide access to test data, including sequencing data, directly to patients upon request. There is some controversy over whether this access right may be somewhat broader, encompassing research data as well-a question beyond the scope of this article. It is clear that in the research setting, deposition of sequencing data into public or private databases often occurs, although little information exists about the return of data files to research participants (in contrast to the extensive deliberations regarding return of results). Thus, further consideration of the issue of access to data files is warranted as well as more effort to understand both patients' and research participants' use of the data.

Full Text

Duke Authors

Cited Authors

  • Haga, SB; Friedman, B; Richard, G

Published Date

  • December 2017

Published In

Volume / Issue

  • 21 / 12

Start / End Page

  • 717 - 721

PubMed ID

  • 29045186

Electronic International Standard Serial Number (EISSN)

  • 1945-0257

Digital Object Identifier (DOI)

  • 10.1089/gtmb.2017.0143


  • eng

Conference Location

  • United States