TY - JOUR
T1 - On sharing intentions, and personal and interdependent privacy considerations for genetic data
T2 - A vignette study
AU - Weidman, Jake
AU - Aurite, William
AU - Grossklags, Jens
N1 - Publisher Copyright:
© 2019 Institute of Electrical and Electronics Engineers Inc.. All rights reserved.
PY - 2019/7
Y1 - 2019/7
N2 - Genetics and genetic data have been the subject of recent scholarly work, with significant attention paid towards understanding consent practices for the acquisition and usage of genetic data as well as genetic data security. Attitudes and perceptions concerning the trustworthiness of governmental institutions receiving test-taker data have been explored, with varied findings, but no robust models or deterministic relationships have been established that account for these differences. These results also do not explore in detail the perceptions regarding other types of organizations e.g., private corporations. Further, considerations of privacy interdependence arising from blood relative relationships have been absent from the conversation regarding the sharing of genetic data. This paper reports the results from a factorial vignette survey study in which we investigate how variables of ethnicity, age, genetic markers, and association of data with the individual's name affect the likelihood of sharing data with different types of organizations. We also investigate elements of personal and interdependent privacy concerns. We document the significant role these factors have in the decision to share or not share genetic data. We support our findings with a series of regression analyses.
AB - Genetics and genetic data have been the subject of recent scholarly work, with significant attention paid towards understanding consent practices for the acquisition and usage of genetic data as well as genetic data security. Attitudes and perceptions concerning the trustworthiness of governmental institutions receiving test-taker data have been explored, with varied findings, but no robust models or deterministic relationships have been established that account for these differences. These results also do not explore in detail the perceptions regarding other types of organizations e.g., private corporations. Further, considerations of privacy interdependence arising from blood relative relationships have been absent from the conversation regarding the sharing of genetic data. This paper reports the results from a factorial vignette survey study in which we investigate how variables of ethnicity, age, genetic markers, and association of data with the individual's name affect the likelihood of sharing data with different types of organizations. We also investigate elements of personal and interdependent privacy concerns. We document the significant role these factors have in the decision to share or not share genetic data. We support our findings with a series of regression analyses.
KW - Data sharing with third parties
KW - Genetic data
KW - Interdependent privacy
KW - Personal privacy
UR - http://www.scopus.com/inward/record.url?scp=85049827922&partnerID=8YFLogxK
U2 - 10.1109/TCBB.2018.2854785
DO - 10.1109/TCBB.2018.2854785
M3 - Article
C2 - 30004885
AN - SCOPUS:85049827922
SN - 1545-5963
VL - 16
SP - 1349
EP - 1361
JO - IEEE/ACM Transactions on Computational Biology and Bioinformatics
JF - IEEE/ACM Transactions on Computational Biology and Bioinformatics
IS - 4
M1 - 3370655
ER -