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

David W. Lounsbury, Thomas C. Reynolds, Bruce D. Rapkin, Mark E. Robson, Jamie Ostroff

Research output: Contribution to journalArticle

8 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)213-222
Number of pages10
JournalSocial Science and Medicine
Volume64
Issue number1
DOIs
StatePublished - Jan 2007
Externally publishedYes

Fingerprint

Privacy
privacy
Research Personnel
Behavioral Research
Health
health
Research
behavioral research
Pedigree
United States Office of Research Integrity
family member
Social Determinants of Health
Amber
Research Ethics Committees
American Medical Association
regulatory authority
medical association
social relations
recommendation
Behavioral health

Keywords

  • Privacy rights
  • Research ethics
  • Third-party subjects
  • USA

ASJC Scopus subject areas

  • Economics and Econometrics
  • Public Health, Environmental and Occupational Health
  • Social Psychology
  • Development
  • Health(social science)

Cite this

Protecting the privacy of third-party information : Recommendations for social and behavioral health researchers. / Lounsbury, David W.; Reynolds, Thomas C.; Rapkin, Bruce D.; Robson, Mark E.; Ostroff, Jamie.

In: Social Science and Medicine, Vol. 64, No. 1, 01.2007, p. 213-222.

Research output: Contribution to journalArticle

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