University of Wisconsin–Madison

Increasing Use of Genetic Data Requires New Privacy Considerations

Type Policy Brief or Report
Year 2019
Level State
State(s) All States
Policy Areas Data & Technology, Health
This report highlights the need to standardize privacy policy in cases of genetic information as genetic data become more common. The Genetic Information Discrimination Act of 2008 (GINA) created privacy and regulation to how employers or insurers could view or request an individual’s personal genetic data. The report recommends updates to GINA to make it more in line with the modern needs of privacy and security. Policy options are listed in the report and given the advantages and disadvantages of their implementation going forward. These policy options include continuing the current GINA, allowing small sample sharing only for scientific research, or promote stronger GINA protections and standardization across the US. Some states have strengthened GINA privacy, which is where the recommendations look to start from.

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