JMIR Publications

ABSTRACT

Background:

The June 2022 United States (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 ages with digital footprints who actively engage in family planning, including abortion and miscarriage care.

Objective:

To assess a childbearing age subpopulation of research participants’ perspectives 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 software and administered to adults (≥18 years of age) registered in the ResearchMatch database (www.ResearchMatch.org) 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) were 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 (86% completion rate). Nearly half of participants (47%, n= 189) self-reported to be persons of childbearing ages (18 to 50 years). Most participants of childbearing ages agreed or strongly agreed that social media data, email data, text message data, Google search history data, online purchase history data, electronic medical records data, fitness tracker/wearables data, credit card statement data, 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 (87%) participants were concerned about defraud or abuse of 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 are 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 present 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 the discretion of digital footprint data related to family planning should be a priority for companies, researchers, families, and other stakeholders. Clinical Trial: Not applicable.