Background
Genetic testing allows doctors and patients to determine whether an individual may be predispose to a particular hereditary disease or condition. Once discovered, this information may allow the patient to take the best course of action in determining preventive strategies, treatment, and family planning.
Problem
Genetic information that is revealed to banks, insurance companies, employers and other family members may pose a risk to individuals – leading them to refuse genetic tests. Since there are no current government protections, nor prohibitions against genetic discrimination, Individuals could be subject to severe psychological, emotional and financial risks.
Policy Position
- Employers, banks, and insurance companies must not have access to an individual’s genetic information without the person’s permission – except in the most limited of circumstances.
- Health professionals and insurers in possession of genetic information released by an individual must not be allowed to trade, loan, sell or share this information without further consent from the patient.
- Congress must act to ensure that the highest levels of protection are afforded to personally identifiable genetic information so that it can never be used against a person, nor accessed without a person’s permission.
- Failure to guarantee protection of genetic information may lead to underutilization of genetic tests, and discrimination against people with certain traits, which impacts Americans alive today, as well as future generations.
- Genetic testing may substantially lower America’s health care costs by allowing patients to proactively seek early treatment and develop strategies that may prevent, delay, or alleviate the consequences of some hereditary conditions.
Whom We Represent
NORD is a federation of approximately 140 not-for-profit health organizations and thousands of individuals and medical professionals serving people with rare diseases. As a voluntary health agency dedicated to helping people with rare disorders, NORD supports federal protections against genetic discrimination.
For more information, contact: Diane E. Dorman, Senoir Director for Public Policy at (301) 421-0018 or via e-mail at ddorman@rarediseases.org.
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