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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Consumer Willingness to Share Personal Digital Information for Health-Related Uses


ELSIcon2022 • Paper • June 3, 2022

Presented by: David Grande

Nandita Mitra, Raghu Iyengar, Raina Merchant, David Asch, Meghana Sharma, Carolyn Cannuscio

Background: Consumers routinely generate digital information that reflects on their health. This information has extraordinary potential for health research and applications, particularly when linked to other data.

Methods: We evaluated consumers’ willingness to share their digital information in a nationally representative survey with a conjoint experiment. Participants (n=3,543, completion rate 56%) were randomized to 15 scenarios reflecting use cases from 324 possible scenarios. Conjoint attributes included: uses (k=3), users (k=3), sources of information (k=9), and disease (k=4). Results reflect mean differences on a 5-point Likert scale (5=most willing to share) from a multivariable model.

Results: Among the conjoint attributes, the source of information (importance weight: 59.1%) was most important. In comparison to electronic health care records, participants were less willing to share information about: finances (-0.56, 95% CI -0.62, -0.50), places they visit from public cameras (-0.28, 95% CI -0.33, -0.22), communication on social media (-0.20, 95% CI -0.26, -0.15), and their internet search history (-0.11, 95% CI -0.17, -0.06). Four clusters of consumers emerged with divergent privacy views as reflected in their overall willingness to share: [never, n=337, mean 1.00; averse, n=1,116, mean 1.64; uncertain, n=1,616, mean 2.84; agreeable, n=474, mean 4.18]. Respondents that identified as white, non-Hispanic, higher income and politically conservative were more likely to be in a cluster that was less willing to share.

Conclusions: Consumers’ willingness to share digital information is influenced by the context. However, strong underlying privacy views are more influential on their willingness to share.


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