Human genomic research (HGR) demands very large pools of data to generate meaningful inference. Yet, the sharing of one’s genetic data for research is a voluntary act. The collection of data sufficient to fuel rapid advancement is contingent on individuals’ willingness to share. Privacy risks associated with sharing this unique and intensely personal data are significant. Genetic data are an unambiguous identifier. Public linkage of donor to their genetic data could reveal predisposition to diseases, behaviors, paternity, heredity, intelligence, etc. The purpose of this paper is to understand individuals’ willingness to volunteer their private information in this high-risk/high-reward context.
The authors collect survey data from 273 respondents and use structural equation modeling techniques to analyze responses.
The authors find statistical support for our theorization. They find that while heightened awareness of the benefits and risks of sharing correlates with increased privacy concerns, the net impact is an increase in intention to share.
The findings suggest that prescriptive awareness might be an effective tool with which policy-makers can gain the sufficient voluntary participation from individuals necessary to drive large-scale medical research.
This study contributes a theoretically and empirically informed model which demonstrates the impact of awareness and privacy concern on individuals’ willingness to share their genetic data for large-scale HGR. It helps inform a rising class of data sufficiency problems related to large-scale medical research.
Heath, D., Ardestani, A. and Nemati, H. (2016), "Sharing personal genetic information: the impact of privacy concern and awareness of benefit", Journal of Information, Communication and Ethics in Society, Vol. 14 No. 3, pp. 288-308. https://doi.org/10.1108/JICES-07-2015-0025Download as .RIS
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