Previously submitted to: JMIR Aging (no longer under consideration since Dec 08, 2025)
Date Submitted: Jan 8, 2025
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
An Assessment of Privacy Concerns and Willingness to Share Real-World Data Among an Aging Population in the United States: Survey Study
ABSTRACT
Background:
Biomedical innovation is often dependent on individuals’ expressed willingness to donate health data generated in real world settings (real-world data or RWD). Yet, unresolved ethical, legal, and social implications (ELSI) concerns (i.e., genetic privacy and nondiscrimination) exist alongside aging populations’ willingness to share RWD with researchers.
Objective:
To describe an aging populations’ willingness to donate health data today and post-mortem with researchers and summarize their ELSI-related concerns.
Methods:
We surveyed participants aged 51 years and older to assess their willingness to donate various types (direct-to-consumer genetic testing, fitness tracking, prescription history, and electronic medical record data) and quantities (none, some, all) of their health-related RWD today and post-mortem to researchers. Descriptive statistical analyses were conducted using Microsoft Excel and manual queries (single layer, bottom-up topic modeling) to quantify, organize, and categorize, from free-text survey responses, comments/concerns into themes and provide illuminating quotes.
Results:
Among 199 survey respondents, most were willing to donate some health data, though more participants were willing to donate health data post-mortem versus today (86% and 55%, respectively). More participants were willing to donate electronic medical record and prescription history data today versus post-mortem (67% versus 48% and 62% versus 52%, respectively). In comparison, participants were less willing to donate genetic and fitness tracker data (58% versus 38% and 55% versus 38%, respectively, today versus post-mortem). Four themes were identified across 96 comments/concerns expressed among participants about sharing data today and in the future: data security, breach, misuse, or mishandling and unintended consequences (42%); privacy and safety from governmental or other institutional discrimination or harm (32%); high selectivity or absolute preference in data sharing (19%); perceived risks associated with sharing data with researchers (7%).
Conclusions:
Certain privacy and nondiscrimination legal protection gaps remain; certain entities are exempt from protections afforded under laws that include but are not limited to the Health Insurance Portability and Accountability Act and Genetic Information Nondiscrimination Act in the United States. This routinely creates real and/or perceived risks for aging populations who may rely on access to and use of insurance benefits and other important aspects of daily life. As our findings substantiate this fact, work is needed to ensure aging populations have access to trustworthy data sharing mechanisms pre- and post-mortem. Clinical Trial: N/A
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Copyright
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