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

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

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Ludman, Evette J. Fullerton, Stephanie M. Spangler, Leslie Trinidad, Susan Brown Fujii, Monica M. Jarvik, Gail P. Larson, Eric B. Burke, Wylie
Spatial Coverage	Washington
Description	Country affiliation: United States Author Affiliation: Ludman EJ ( Group Health Research Institute, USA. ludman.e@ghc.org)
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.
File Format	HTM / HTML
ISSN	15562646
e-ISSN	15562654
DOI	10.1525/jer.2010.5.3.9
Journal	Journal of Empirical Research on Human Research Ethics: An International Journal
Issue Number	3
Volume Number	5
Language	English
Publisher	Sage Publication
Publisher Date	2010-09-01
Publisher Place	United States
Access Restriction	Open
Subject Keyword	Discipline Ethics Databases, Genetic Information Dissemination Informed Consent Research Subjects Consumer Behavior Washington Research Support, N.i.h., Extramural
Content Type	Text
Resource Type	Article
Subject	Education Medicine Law Social Psychology Communication

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1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
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9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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Glad you asked: Participants' Opinions of Re-Consent for dbGaP Data Submission

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