TY  - JOUR
AU  - Henrikson, Nora B.
AU  - Blasi, Paula R.
AU  - Figueroa Gray, Marlaine
AU  - Palazzo, Lorella
AU  - Scrol, Aaron
AU  - Fullerton, Stephanie M.
PY  - 2022
DA  - 2022/10/31
TI  - “Not Private at All:” Comparative Perspectives on Privacy of Genomic Data, Family History Data, Health-Related Data, and Other Personal Data
JO  - OBM Genetics
SP  - 167
VL  - 06
IS  - 04
AB  - People choose how and if to generate and disclose not just personal genomic data, but also multiple other types of personal health and non-health related data. To contextualize choices about genetic testing and genetic data disclosure, we explored perspectives of genomic data privacy and disclosure compared to other types of data. We conducted a qualitative focus group study with adult members of an integrated U.S. health system, using administrative data to stratify our sample by age and by race/ethnicity. Discussion topics included qualities, rights, benefits and harms of disclosure of genomic, health, family history and non-health related data. We conducted thematic template analysis using verbatim transcripts. The sample (n = 24) was 67% female, mean age 54.1 years (range 23-88), and 37% people of color; 71% reported college degree. Participants considered genetic data, but not other data types, as a permanent, core part of the individual self and as protected health information under current laws. Participants did not feel that individuals had a right to family medical history disclosure from their relatives. Participants assumed high levels of privacy protections of genetic and other health-related data, but no perceived privacy or protection around other personal data. Participants weighed benefits and risks of generation and disclosure of all data types; harms were more far-reaching for non-health data, possibly related to the perceived lack of protections around these data. People make privacy-related choices about genetic testing in the context of related considerations for multiple types of data and rely on perceived privacy protections under current U.S. health privacy laws. Genetic research and screening programs should consider providing clear guidance on privacy protections afforded to genetic information in U.S. clinical settings. Future research should examine connections between privacy-related views on genetic and multiple other types of personal data.
SN  - 2577-5790
UR  - https://doi.org/10.21926/obm.genet.2204167
DO  - 10.21926/obm.genet.2204167
ID  - Henrikson2022
ER  -