Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample

Minakshi Raj, Raymond de Vries, Paige Nong, Sharon L.R. Kardia, Jodyn E. Platt

Research output: Contribution to journalArticlepeer-review

9 Scopus citations

Abstract

Background With the emergence of new health information technologies, health information can be shared across networks, with or without patients’ awareness and/or their consent. It is often argued that there can be an ethical obligation to participate in biomedical research, motivated by altruism, particularly when risks are low. In this study, we explore whether altruism contributes to the belief that there is an ethical obligation to share information about one’s health as well as how other health care experiences, perceptions, and concerns might be related to belief in such an obligation. Methods We conducted an online survey using the National Opinion Research Center’s (NORC) probability-based, nationally representative sample of U.S. adults. Our final analytic sample included complete responses from 2069 participants. We used multivariable logistic regression to examine how altruism, together with other knowledge, attitudes, and experiences contribute to the belief in an ethical obligation to allow health information to be used for research. Results We find in multivariable regression that general altruism is associated with a higher likelihood of belief in an ethical obligation to allow one’s health information to be used for research (OR = 1.22, SE = 0.14, p = 0.078). Trust in the health system and in care providers are both associated with a significantly higher likelihood of believing there is an ethical obligation to allow health information to be used (OR = 1.48, SE = 0.76, p<0.001; OR = 1.58, SE = 0.26, p<0.01, respectively). Conclusions Belief that there is an ethical obligation to allow one’s health information to be used for research is shaped by altruism and by one’s experience with, and perceptions of, health care and by general concerns about the use of personal information. Altruism cannot be assumed and researchers must recognize the ways encounters with the health care system influence (un)willingness to share one’s health information.

Original languageEnglish (US)
Article numbere0244767
JournalPloS one
Volume15
Issue number12 December
DOIs
StatePublished - Dec 2020
Externally publishedYes

Bibliographical note

Funding Information:
SLRK and JEP received NIH grant 5R01 CA214829-03 (The Lifecycle of Health Data: Policies and Practices) URL: https://projectreporter.nih.gov/project_info_description. cfm?aid=9852993&icde=51752022 The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Publisher Copyright:
© 2020 Raj et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

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