NDLI: Communicating disclosure risk in informed consent statements.

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Communicating disclosure risk in informed consent statements.

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Singer, Eleanor Couper, Mick P.
Spatial Coverage	Michigan
Description	Country affiliation: United States Author Affiliation: Singer E ( Survey Research Center, Institute for Social Research, University of Michigan, Ann Arbor, MI 48106, USA. esinger@isr.umich.edu)
Abstract	For several years, we have experimented with various ways of communicating disclosure risk and harm to respondents in order to determine how these affect their willingness to participate in surveys. These experiments, which used vignettes administered to an online panel as well as a mail survey sent to a national probability sample, have demonstrated that (a) the probability of disclosure alone has no apparent effect on people's willingness to participate in the survey described, (b) the sensitivity of the survey topic has such an effect, and (c) making explicit the possible harms that might result from disclosure also reduces willingness to participate, in both the vignette and the mail experiments. As a last study in this series, we experimented with different ways of describing disclosure risk in informed consent statements that might more plausibly be used in real surveys, again using vignettes administered to an online panel. As suggested by our earlier work, we found that the precise wording of the confidentiality assurance had little effect on respondents' stated willingness to participate in the hypothetical survey described. However, the experimental manipulations did have some effect on perceptions of the risks and benefits of participation, suggesting that they are processed by respondents. And, as we have found in our previous studies, the topic of the survey has a consistent and statistically significant effect on stated willingness to participate. We explore some implications of these findings for researchers seeking to provide adequate information to potential survey respondents without alarming them unnecessarily.
File Format	HTM / HTML
ISSN	15562646
e-ISSN	15562654
DOI	10.1525/jer.2010.5.3.1
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 Confidentiality Disclosure Patient Selection Michigan Regression Analysis Risk Assessment Questionnaires Randomized Controlled Trial 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
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
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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