The National Society of Genetic Counselors (NSGC) believes that no individual should be discriminated against on the basis of genetic information obtained from genetic testing or family health history. NSGC supports the Genetic Information Nondiscrimination Act of 2008 (GINA), the Health Insurance Portability and Accountability Act (HIPAA), and other local, state and federal legislation that protects individuals by safeguarding employment and medical insurance eligibility but recognizes these laws do not provide protections from all discrimination, including that by life, long-term care, and disability insurers. NSGC recognizes the use of genetic information in insurance underwriting for life, long-term care, and disability insurance plans, but advocates for transparency in the underwriting process, and believes that the use of genetic information must be based on strong actuarial evidence for disease risk. NSGC believes that any use of genetic information must incorporate patient choice, be predicated on an evidence base that demonstrates improved health outcomes, be secure, and not be used to put selected groups at a disadvantage solely based on genetic information.
NSGC supports federal and/or state legislation to protect all individuals from discriminatory actions not covered under current laws, and encourages appropriate communication of this information to patients. No person should forego, or feel the need to forgo, medical care, genetic testing, or participation in clinical trials and/or research studies out of fear that genetic information may be used against them or family members. (Formerly titled Nondiscrimination. Adopted 1991, revised 2011, reaffirmed 2015, revised 2020.)
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