Considering the Benefits and Risks of Research Participants' Access to Sequence Data.
Summary of "Considering the Benefits and Risks of Research Participants' Access to Sequence Data."
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.
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Journal Details
This article was published in the following journal.
Name: Genetic testing and molecular biomarkers
ISSN: 1945-0257
Pages:
Links
- PubMed Source: http://www.ncbi.nlm.nih.gov/pubmed/29045186
- DOI: http://dx.doi.org/10.1089/gtmb.2017.0143
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Medical and Biotech [MESH] Definitions
Qualitative Research
Research that derives data from observation, interviews, or verbal interactions and focuses on the meanings and interpretations of the participants (From Holloway and Wheeler, "Ethical issues in qualitative nursing research," Nursing Ethics, 1995 Sep; 2(3): 223-232).
Uncertainty
The condition in which reasonable knowledge regarding risks, benefits, or the future is not available.
Molecular Sequence Data
Descriptions of specific amino acid, carbohydrate, or nucleotide sequences which have appeared in the published literature and/or are deposited in and maintained by databanks such as GENBANK, European Molecular Biology Laboratory (EMBL), National Biomedical Research Foundation (NBRF), or other sequence repositories.
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Data Curation
Management activities required to maintain research data to ensure that they are fit for contemporary use and available for discovery and reuse.
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