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Update on Genetic Discrimination Legislation

by Erin Anthony

The Genetic Information Non-Discrimination Act of 2005 (GINA), was introduced in the House of Representatives in March. Despite winning unanimously in the Senate (98-0), the legislation is said to face heavy opposition in the House, where a similar effort died last year.

The legislation bars health insurers and employers from discriminating against people with a genetic predisposition to disease.  It prevents health insurers from excluding people from coverage or charging higher rates because of genetic risk.  Under the legislation, insurers cannot require customers to take genetic tests prior to enrollment, and employers are barred from basing hiring and firing decisions on genetic information.  The current measure covers public and private health plans, employers, employment agencies, labor organizations and training programs.  It also tightens protection of medical information privacy.

GINA is the work of Sen. Olympia J. Snowe (R-Maine) who has introduced similar legislation in each of the last four congresses.  The first version of this type of bill was introduced in April 1996.

According to Snowe, the legislation is necessary to insure that advances in treatment and prevention of disease do not constitute a new basis for discrimination.  Medical experts say that many people who could benefit from certain genetic screening tests do not take them for fear of losing health coverage for themselves or their families.  For example, The National Institutes of Health report that nearly 32 percent of women offered genetic testing for breast cancer risk decline to take it citing concerns about health insurance discrimination.

Since its introduction into the House, GINA has gained 24 new cosponsors bringing the total to 76.  Although the legislation is supported by President Bush, Michael Maves the chief executive of the American Medical Association, The National Society of Genetic Counselors, The Coalition for Genetic Fairness, and many others, it faces heavy opposition from business lobbyists and some Republican leaders.

Business groups argue that the legislation will add regulatory burdens without improving consumer protection.  But, supporters think national rules, rather than state regulations are in everyone’s interest.  Currently, about 15 states have laws specifically protecting against genetic discrimination. To find out if your state has laws against genetic discrimination, log on to the homepage of the National Conference of State Legislatures at www.ncsl.org .

How does genetic discrimination affect people with CAH? 

Genetic testing is particularly important in families with a history of CAH.  Testing in the parents allows for early detection and treatment in the child—especially critical in states without newborn screening. However, some people may fear discrimination by health insurers and avoid testing for CAH.  The Genetic Non-Discrimination Act of 2005 would prevent insurers from dropping coverage or charging higher rates for families known to carry mutations for CAH.

What can you do?

Right now, GINA is in the House of Representatives and faces heavy opposition from business lobbyists and some Republican leaders.  It is important that state representatives know how important it is that GINA passes.  Legislation like GINA has been introduced in each of the last four Congresses and never passed.  It also won unanimously in the Senate last year but then died in the House.  To find your Congressperson, log on to www.house.gov/writerep .   

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