A Survey Of Autistic Adults' Opinions On Data Security and Privacy In Precision Medicine Research
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Authors
Haser, Bianca
Issue Date
2020-05-01
Type
thesis_campus
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Keywords
Genetics and Genomics
Alternative Title
Human Genetics Theses
Abstract
The All Of Us research program, a precision medicine research (PMR) study, has listed among its aims the reduction of health disparities across the United States. In order to achieve this goal it is important to ensure equal representation in the study. This survey represents an effort to explore the often-overlooked views of Autistic individuals, specifically their concerns over data security and privacy, in order to identify potential impediments to their participation in PMR. Of the 104 Autistic participants surveyed, an overwhelming majority (94%, n=98) state they would participate in PMR. However many expressed concern over the privacy of their genetic (69%, n= 72) and health information (76%, n= 79), suggesting that Autistic participants are willing to participate, but may have unique needs that must be met in order to achieve long term engagement. The results of this survey may serve to inform researchers on how to engage those with Autism in PMR.
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