Federal Agency Urges Researchers to Tread Carefully With New Genetics Law
Washington — When scholars ask people to donate genetic samples for scientific research, they should be sure that the donors understand the Genetic Information Nondiscrimination Act, a federal law that was enacted last year.
That, in a nutshell, is the message of a new guidance document from the federal Office for Human Research Protections. The document, which was announced today in the Federal Register, urges scholars — and the human-subjects committees that oversee their research — to make sure that potential genetic donors understand the limited protections offered by the new law.
The act generally prohibits health insurers and employers with more than 15 employees from using genetic information to make decisions about health coverage, insurance premiums, or employment. The employment provision will take effect in November 2009, and the health-insurance provisions will take effect between May 2009 and May 2010. Once the provisions take effect, employers and health insurers will be forbidden to ask about (or make decisions based upon) any genetic data, no matter how long ago the data were collected.
But the law does not prohibit genetic discrimination by small employers or by issuers of life insurance, disability insurance, and long-term-care insurance. Because of the risk of discrimination in those contexts, the new guidance reminds scholars of their obligations to protect subjects’ privacy and to maintain the confidentiality of data. If research participants request information about their personal genetic data, they should be aware that after the data come into their hands, life-insurance companies and small employers might have the right to ask them about the information.
In The Chronicle Review in January, Christopher Shea wrote about sociologists’ rising interest in genetic data. In 2007 the National Institutes of Health published ground rules for the use of the central federal repository of human genetic data. —David Glenn
news by Chronicle of Higher Education / chronicle.com