Privacy Attitudes among Early Adopters of Emerging Health Technologies.
BACKGROUND
Advances in health technology such as genome sequencing and wearable sensors now allow for the collection of highly granular personal health data from individuals. It is unclear how people think about privacy in the context of these emerging health technologies. An open question is whether early adopters of these advances conceptualize privacy in different ways than non-early adopters.


OBJECTIVE
This study sought to understand privacy attitudes of early adopters of emerging health technologies.


METHODS
Transcripts from in-depth, semi-structured interviews with early adopters of genome sequencing and health devices and apps were analyzed with a focus on participant attitudes and perceptions of privacy. Themes were extracted using inductive content analysis.


RESULTS
Although interviewees were willing to share personal data to support scientific advancements, they still expressed concerns, as well as uncertainty about who has access to their data, and for what purpose. In short, they were not dismissive of privacy risks. Key privacy-related findings are organized into four themes as follows: first, personal data privacy; second, control over personal information; third, concerns about discrimination; and fourth, contributing personal data to science.


CONCLUSIONS
Early adopters of emerging health technologies appear to have more complex and nuanced conceptions of privacy than might be expected based on their adoption of personal health technologies and participation in open science. Early adopters also voiced uncertainty about the privacy implications of their decisions to use new technologies and share their data for research. Though not representative of the general public, studies of early adopters can provide important insights into evolving attitudes toward privacy in the context of emerging health technologies and personal health data research.
Center for Wireless and Population Health Systems, Calit2, University of California San Diego, La Jolla, California, United States of America.
Cynthia
C
Cheung
Center for Wireless and Population Health Systems, Calit2, University of California San Diego, La Jolla, California, United States of America.|Department of Informatics, Donald Bren School of Information and Computer Sciences, University of California Irvine, Irvine, California, United States of America.
Matthew J
MJ
Bietz
Center for Wireless and Population Health Systems, Calit2, University of California San Diego, La Jolla, California, United States of America.|Department of Family Medicine and Public Health, School of Medicine, University of California San Diego, La Jolla, California, United States of America.
Kevin
K
Patrick
Center for Wireless and Population Health Systems, Calit2, University of California San Diego, La Jolla, California, United States of America.|Department of Family Medicine and Public Health, School of Medicine, University of California San Diego, La Jolla, California, United States of America.|Department of Psychiatry, School of Medicine, University of California San Diego, La Jolla, California, United States of America.
Cinnamon S
CS
Bloss
D000293:Adolescent; D000328:Adult; D000368:Aged; D035843:Biomedical Research; D003219:Confidentiality; D005260:Female; D015894:Genome, Human; D007722:Health Knowledge, Attitudes, Practice; D055991:Health Records, Personal; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D063731:Mobile Applications; D018907:Privacy; D055815:Young Adult