President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law

[Guest guest]

President Bush Signs Landmark Genetic Nondiscrimination Information

Act Into Law

http://www.medicalnewstoday.com/articles/108399.php

The Coalition for Genetic Fairness commends President W. Bush

for signing into law today the first civil rights legislation of the

new millennium, the Genetic Information Nondiscrimination Act (GINA).

GINA is the first and only federal legislation that will provide

protections against discrimination based on an individual's genetic

information in health insurance coverage and employment settings.

" This is a tremendous victory for every American not born with

perfect genes - which means it's a victory for every single one us, "

said Representative Louise Slaughter (D-NY). " Since all of us are

predisposed to at least a few genetic-based disorders, we are all

potential victims of genetic discrimination. "

" Today marks the beginning of a new era in health care, " continued

Slaughter. " Americans can finally take advantage of the tremendous

potential of genetic research without the fear that their own genetic

information will be used against them. "

Just a few weeks ago, GINA received overwhelming support in both the

Senate, with a unanimous vote of approval, and the House of

Representatives, where the legislation was passed by a landslide vote

of 414-1.

" Individuals no longer have to worry about being discriminated

against on the basis of their genetic information, and with this

assurance, the promise of genetic testing and disease management and

prevention can be realized more fully, " stated Sharon Terry,

president of the Coalition and CEO of Genetic Alliance

(http://www.geneticfairness.org). " We applaud our champions on the

Hill who have worked tirelessly to pass this important legislation.

It is now our responsibility to make sure the public knows that these

new protections are in place. " The health insurance protections

offered by GINA are expected to roll out 12 months after the bill is

signed, whereas the employment protections will be fully realized in

18 months.

" Now that GINA has been approved and signed into federal law by the

President, American health care consumers and employees will no

longer have to fear the adverse effects of being tested to determine

their risk status for genetic diseases, " said Joann Boughman, Ph.D.,

executive vice president of the American Society of Human Genetics

(http://www.ashg.org/) and a member of the Coalition's executive

committee. " Once this legislation has taken effect, clinicians will

be able to order genetic tests for patients and their families in a

manner that ensures the full realization of the advantages of

personalized medicine, while also easing patients' concerns about the

risk of genetic discrimination by insurance companies and employers

based on this data. "

Specifically, the legislation protects against genetic discrimination

by health insurers or employers by:

- Prohibiting group health insurance plans and issuers offering

coverage on the group or individual market from basing eligibility

determinations or adjusting premiums or contributions on the basis of

an individual's genetic information. Insurance companies cannot

request, require or purchase the results of genetic tests, and they

are prohibited from disclosing personal genetic information.

- Prohibiting issuers of Medigap policies from adjusting pricing or

conditioning eligibility on the basis of genetic information. They

cannot request, require or purchase the results of genetic tests, or

disclose genetic information.

- Prohibiting employers from firing, refusing to hire, or otherwise

discriminating with respect to compensation, terms, conditions or

privileges of employment. Employers may not request, require or

purchase genetic information, and they are also prohibited from

disclosing personal genetic information. Similar provisions apply to

employment agencies and labor organizations.

The Coalition for Genetic Fairness is an alliance of advocacy

organizations, health professionals, and industry leaders working to

educate Congressional policymakers about the importance of legal

protections for genetic information and ensure passage of meaningful

genetic information nondiscrimination legislation.

The Coalition for Genetic Fairness is led by: Genetic Alliance,

Affymetrix, American Academy of Pediatrics, The American Society of

Human Genetics, Brown University, Hadassah, National Society of

Genetic Counselors, and the National Workrights Institute.