Series
The 5th ELSI Congress - ELSIcon2022
ELSIcon2022 Paper: Consumer Willingness to Share Personal Digital Information for Health-Related Uses
Type
Conference

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.

Tags

Keywords
Live
Paper
Attitudes about sharing biological samples and health data

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

Related Videos