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.
authors.affiliation: Memorial Sloan Kettering Cancer Center, 1275 York Avenue, New York, NY 10021, USA. lounsdud@mskcc.org
authors.forename: David W
authors.initials: DW
authors.lastname: Lounsbury
authors.forename: Thomas C
authors.initials: TC
authors.lastname: Reynolds
authors.forename: Bruce D
authors.initials: BD
authors.lastname: Rapkin
authors.forename: Mark E
authors.initials: ME
authors.lastname: Robson
authors.forename: Jamie
authors.initials: J
authors.lastname: Ostroff
mesh_terms: D001524:Behavioral Medicine; D003219:Confidentiality; D003625:Data Collection / Q000592:standards; D032984:Ethics, Research; D006801:Humans; D007258:Informed Consent; D035842:Research Subjects; D012942:Social Sciences; D014481:United States