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PMID: 20831417 Published · ppublish English Journal Article Research Support, N.I.H., Extramural

Glad you asked: participants' opinions of re-consent for dbGap data submission.

Journal of empirical research on human research ethics : JERHRE ·Vol. 5 ·No. 3 ·2010-09-00 ·Pages 9-16

Ludman EJ, Fullerton SM, Spangler L, Trinidad SB, Fujii MM, Jarvik GP, Larson EB, Burke W

Abstract

No consensus exists about when researchers need additional participant consent (reconsent) to submit existing data to the federal database of Genotypes and Phenotypes (dbGaP). Re-consent for submission of their data to dbGaP was sought from 1,340 study participants, 1,159 (86%) of whom agreed. We invited the first 400 of those who agreed to complete a telephone survey about their reasoning for their consent decision and their satisfaction with the reconsent process; 365 participants completed the survey. Respondents reported that it was very (69%) or somewhat (21%) important that they were asked for their permission. Many respondents considered alternatives to consent, such as notification-only or opt-out, to be unacceptable (67% and 40%, respectively). These results suggest that re-consent for dbGaP deposition may be advisable in certain cases to anticipate and honor participant preferences.

MeSH Terms
Aged Aged, 80 and over Attitude Consumer Behavior Data Collection Databases, Genetic Female Humans Information Dissemination Informed Consent Male Research Subjects Telephone Washington
Authors & Affiliations
8 authors, click to expand affiliations / ORCID
Ludman Evette J
Group Health Research Institute, USA. [email protected]
Fullerton Stephanie M
Spangler Leslie
Trinidad Susan Brown
Fujii Monica M
Jarvik Gail P
Larson Eric B
Burke Wylie
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Article Info
Journal
Journal of empirical research on human research ethics : JERHRE
Abbr.
J Empir Res Hum Res Ethics
ISSN
1556-2646
DOI
10.1525/jer.2010.5.3.9
Email
[email protected]
Published
2010-09-00
Pages
9-16
Language
English
Region
United States
NLM ID
101273949
PMCID
PMC3071850
Subset
IM
Grants
NHGRI NIH HHS · U01 HG004610 · United States
NHGRI NIH HHS · U01 HG004610-02S1 · United States
NHGRI NIH HHS · U01 HG006375 · United States
NHGRI NIH HHS · 3U01 HG004610-02S1 · United States
External Links
PubMed source DOI: 10.1525/jer.2010.5.3.9 PMC Full Text View journal details
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