Genetic Non-discrimination

As work on the human genome proceeded, there was worldwide recognition that DNA information could be used for great good, and it could also be misused.  Many countries throughout Europe and in Australia, New Zealand, and Japan, have already taken action to establish basic legal protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies that will result from the scientific advances in the field of genetics.

In the United States, the Genetic Information Non-Discrimination Act (GINA) was passed in 2008, to be implemented by the states by fall of 2009.  GINA prohibits discrimination on the basis of genetic information with respect to health insurance and employment.  It also prevents health insurers from denying coverage or adjusting premiums based on an individual’s predisposition to a genetic condition (before any medical issues arise), and prohibits employers from discriminating on the basis of predictive genetic information. GINA stops both employers and insurers from requiring applicants to submit to genetic tests, maintains strict use and disclosure requirements of genetic test information, and imposes penalties against employers and insurers who violate these provisions.

The website of the National Conference of State Legislatures provides a table with a current summary of state laws pertaining to the use of genetic information in health insurance. Restrictions on the use of genetic information in health insurance may address the use of genetic information in individual insurance, group insurance or both. These laws may restrict health insurers from engaging in certain activities, including using genetic information to determine eligibility or set premiums, requiring genetic testing of applicants, or disclosing genetic information without consent. The states with genetics and health insurance laws listed in the table also may have laws related to other genetics policy issues, such as genetic privacy or genetic discrimination in other settings. The legislature may have addressed these issues in conjunction with or separately from genetics and health insurance.

http://www.ncsl.org/default.aspx?tabid=14374

As printed in the VHL Family Forum 18:2, May 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.