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Minnesota Gene Pool Blog

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The Genetic Information Nondiscrimination Act (GINA): Implications for policy and practice

After 13 years of effort by literally a cast of thousands, GINA was passed overwhelmingly by both Houses of Congress and signed into law by President Bush this spring. So, now that this policy in place, what does it do and doesn't do regarding protecting individuals from potential genetic discrimination?

In the June 19, 2008 issue of the New England Journal of Medicine, Kathy Hudson, MK Holohan and Francis Collins review GINA to succintly answer these in a short review that is freely available.

Although a landmark piece of legislation that provides much needed protection for healthy people with a genetic predisposition for disease, there are still gaps in protection. It is important for practitioners and researchers to understand GINA's strengths and weaknesses so that they can counsel their patients and research subjects with accurate and complete information about the risks and benefits of genomic medicine and/or participating in genomic research.

Below the fold is a bulleted summary from this article of what GINA addresses for practical purposes.

Quick Guide to GINA

What GINA does

Prohibits group and individual health insurers from using a person's genetic information in determining eligibility or premiums

Prohibits an insurer from requesting or requiring that a person undergo a genetic test

Prohibits employers from using a person's genetic information in making employment decisions such as hiring, firing, job assignments, or any other terms of employment

Prohibits employers from requesting, requiring, or purchasing genetic information about persons or their family members

Will be enforced by the Department of Health and Human Services, the Department of Labor, and the Department of Treasury, along with the Equal Opportunity Employment Commission; remedies for violations include corrective action and monetary penalties

What GINA does not do

Does not prevent health care providers from recommending genetic tests to their patients

Does not mandate coverage for any particular test or treatment

Does not prohibit medical underwriting based on current health status

Does not cover life, disability, or long-term-care insurance

Does not apply to members of the military

Key terms

"Genetic information" includes information about:

A person's genetic tests

Genetic tests of a person's family members (up to and including fourth-degree relatives)

Any manifestation of a disease or disorder in a family member

Participation of a person or family member in research that includes genetic testing, counseling, or education

"Genetic tests" refers to tests that assess genotypes, mutations, or chromosomal changes

Examples of protected tests are:

Tests for BRCA1/BRCA2 (breast cancer) or HNPCC (colon cancer) mutations

Classifications of genetic properties of an existing tumor to help determine therapy

Tests for Huntington's disease mutations

Carrier screening for disorders such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, and the fragile X syndrome

Routine tests such as complete blood counts, cholesterol tests, and liver-function tests are not protected under GINA

From Hudson KL, Holohan MK, Collins F. Keeping Pace with the Times — The Genetic Information Nondiscrimination Act of 2008. NEJM 2008: 358(25):2661-2663

Posted by Kristin Oehlke on June 20, 2008 2:42 PM |