An Assessment of Perspectives and Concerns Among Research Participants of Childbearing Age Regarding the Health-Relatedness of Data, Online Data Privacy, and Donating Data to Researchers: Survey Study

BACKGROUND: The June 2022 US Supreme Court decision to ban abortion care in Dobbs v Jackson Women’s Health Organization sparked ominous debate about the privacy and safety of women and families of childbearing age with digital footprints who actively engage in family planning, including abortion and miscarriage care. OBJECTIVE: To assess the perspectives of a subpopulation of research participants of childbearing age regarding the health-relatedness of their digital data, their concerns about the use and sharing of personal data online, and their concerns about donating data from various sources to researchers today or in the future. METHODS: An 18-item electronic survey was developed using Qualtrics and administered to adults (aged ≥18 years) registered in the ResearchMatch database in April 2021. Individuals were invited to participate in the survey regardless of health status, race, gender, or any other mutable or immutable characteristics. Descriptive statistical analyses were conducted using Microsoft Excel and manual queries (single layer, bottom-up topic modeling) and used to categorize illuminating quotes from free-text survey responses. RESULTS: A total of 470 participants initiated the survey and 402 completed and submitted the survey (for an 86% completion rate). Nearly half the participants (189/402, 47%) self-reported to be persons of childbearing age (18 to 50 years). Most participants of childbearing age agreed or strongly agreed that social media data, email data, text message data, Google search history data, online purchase history data, electronic medical record data, fitness tracker and wearable data, credit card statement data, and genetic data are health-related. Most participants disagreed or strongly disagreed that music streaming data, Yelp review and rating data, ride-sharing history data, tax records and other income history data, voting history data, and geolocation data are health-related. Most (164/189, 87%) participants were concerned about fraud or abuse based on their personal information, online companies and websites sharing information with other parties without consent, and online companies and websites using information for purposes that are not explicitly stated in their privacy policies. Free-text survey responses showed that participants were concerned about data use beyond scope of consent; exclusion from health care and insurance; government and corporate mistrust; and data confidentiality, security, and discretion. CONCLUSIONS: Our findings in light of Dobbs and other related events indicate there are opportunities to educate research participants about the health-relatedness of their digital data. Developing strategies and best privacy practices for discretion regarding digital-footprint data related to family planning should be a priority for companies, researchers, families, and other stakeholders.