Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. Fear of discrimination is a common concern among people considering genetic testing.

Several laws at the federal and state levels help protect people against genetic discrimination. In particular, a federal law called the Genetic Information Nondiscrimination Act (GINA) is designed to protect people from this form of discrimination. However, GINA does not apply to life insurance because it is regulated by the states.

Lack of protection against genetic discrimination in obtaining life insurance has caused many individuals to defer and not undergo genetic testing. In addition, for those who receive results from genetic testing through direct-to-consumer methods, they may shy away from sharing reports with their physicians because the results could be document in their medical records. Life insurers, on the other hand, fear that consumers will obtain more coverage than what they would ordinarily obtain, although no evidence supports this conclusion. In the United States, only the state of Florida has banned life insurance companies from using genetic information, defined as the results of predictive genetic tests, in underwriting unless the information is accompanied by a diagnosis of a medical condition. This means that carriers of autosomal recessive or X-linked disorders are protected. Several other countries, including Australia, Canada, and South Korea, already restrict the use of predictive genetic test results by life insurers.

Because of the individual state regulation of life insurance in the US, it will require an initiative from insurers to self-regulate their practices regarding genetic discrimination.  If self-regulation does not mitigate discrimination, then the life insurers will need to collaborate with the other stakeholders and government to adopt a policy that adequately balances the competing economic and social arguments on both sides of the aisle.

Genetic counselors are uniquely positioned as stakeholders to shape policies. Their daily professional demands require them to stay abreast of rapidly evolving information in genetics. Laws, on the other hand, are glacially slow to change. Genetic counselors should be aware of the current and pending legislation in the states where they practice. They should also be seated at the table to help state insurance commissioners and simultaneously advocate for patients. All parties need the same information to ensure that genetic information is not misused.

References:

A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27

Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries

Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead

Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information

The Florida Senate: HB 1189 — Genetic Information for Insurance Purposes