Protecting the privacy of third-party information: Recommendations for social and behavioral health researchers Journal Article

Authors: Lounsbury, D. W.; Reynolds, T. C.; Rapkin, B. D.; Robson, M. E.; Ostroff, J.
Article Title: Protecting the privacy of third-party information: Recommendations for social and behavioral health researchers
Abstract: In psychosocial and health-behavioral research, we often request that research participants provide information on significant individuals in their lives, so-called "third parties". Recently there has been a greater recognition of privacy issues and risks in research pertaining to third parties. Reaction on the part of USA federal regulatory authorities to one study [Amber, D. (2000). Case at vcu bring ethics to forefront., 14, 1], which attempted to collect survey data about the psychiatric history of respondents' parents, has generated such concern and caution that longstanding practices for the collection of social determinants of health data are being questioned and are at risk of being disallowed by Institutional Review Boards (IRBs). In this paper, we consider third party research rights and risks from the perspective of social and behavioral scientists. Focusing on research about health and quality of life, we first discuss the rationale for research methods that elicit contextual information about family members, friends, co-workers, and other social contacts. Second, we discuss the matter of 'privacy' and its central role in the current third party rights and risks dialogue. Next, we describe ways to effectively manage third-party information, building upon current recommendations by the Office for Human Research Protections (OHRP) and Botkin's [(2001). Protecting the privacy of family members in survey and pedigree research. Journal of the American Medical Association, 285(2), 207-211] treatment of the matter for survey and pedigree research. Lastly, we discuss the implications of applying these data collection and management strategies in social and behavioral research. We assert that these recommendations protect the rights of, and minimize the risks to, third parties without impeding social and behavioral health research. © 2006 Elsevier Ltd. All rights reserved.
Keywords: united states; methodology; quality of life; health behavior; health survey; data collection; medical information; medical research; research; informed consent; medical ethics; north america; ethics; research ethics; data collection method; social behavior; confidentiality; pedigree analysis; privacy; behavioral medicine; usa; social sciences; research subjects; privacy rights; third-party subjects; civil rights; human rights; ethics, research
Journal Title: Social Science and Medicine
Volume: 64
Issue: 1
ISSN: 0277-9536
Publisher: Elsevier Inc.  
Date Published: 2007-01-01
Start Page: 213
End Page: 222
Language: English
DOI: 10.1016/j.socscimed.2006.08.035
PUBMED: 17049702
PROVIDER: scopus
Notes: --- - "Cited By (since 1996): 3" - "Export Date: 17 November 2011" - "CODEN: SSMDE" - "Source: Scopus"
Altmetric Score
MSK Authors
  1. Jamie S Ostroff
    208 Ostroff
  2. Mark E Robson
    358 Robson
  3. Bruce D Rapkin
    45 Rapkin