On April 5, 2016, United States Senators Elizabeth Warren (D-MA) and Mike Enzi (R-WY) introduced the bipartisan Genetic Research Privacy Protection Act. This Act aims to enhance and expand privacy protections for those involved in biomedical research.
At the present time, there is a great deal of interest in sharing genetic information in the course of research and that interest will only increase. The Genetic Information Nondiscrimination Act of 2008 (GINA) was forward looking in offering protections that have been important to the development of genomic science and precision medicine. When GINA was passed in 2008, those of us who had worked on it for more than 12 years remarked that we would have to do a great deal of education about the Act, since for many Americans the word ‘‘genetic’’ was not in their general lexicon. Now TV and Facebook regularly have ads for Ancestry.com and 23andMe. It is not unusual to hear a radio commercial for the local hospital claiming to use personalized or precision medicine as a part of everyday care, including “examining your genotype.” Americans know the word ‘‘genetic’’ and even the word “genomic” now. GINA was limited to prohibiting genetic discrimination in health insurance and employment.
This familiarity does not mean Americans understand the implications of genetics and genomics in our lives. This is still an area of intense research and the need for increasing discoveries. It does mean that we are more concerned about the ubiquitous nature of what once seemed relegated to rare conditions. When employers are talking about using genetic information to make decisions about wellness programs, we know we are in a very different era than when GINA was passed. In another dramatic indication of more widespread use of genomic information, the Precision Medicine Initiative will build a database of more than 1 million people, and eventually store the genomic information from these individuals. Thus a large increase in research that includes genomic information is quite possible.
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