Stored Health Data and Informed Consent
Kilada, Madeline
Kilada, Madeline
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Abstract
Advances in genetic testing made it possible to predict disease risk, and employers and health insurers could potentially use this information to make decisions about hiring or coverage. Genomic studies involve large data sets and bio banks. Additionally, future research use isn't easily predictable when participants first take part. There were no strong federal protections preventing discrimination based on genetic information, which created fear that people would avoid genetic testing or research participation. Informed consent approaches assume that research goals, risks, and benefits can be explained upfront, but this assumption doesn't hold well when future research is unknown, data may be re-used years later and genomic info can raise privacy concerns. Congress passed GINA in 2008 to prohibit health insurance and employment discrimination based on genetic information and to encourage public trust in genetic research. Alternative consent models are needed so there is improved communication about data use, and privacy systems need to be put in place in order to better balance respect for research participants so genomic research is ethical and responsible.
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Date
1/1/2026
Student Status
Sophomore (Graduating in 2028)
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Poster
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Biology
College/School
College of Arts and Sciences
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Life Science