Genetic Information and Insurance: Legal and Ethical Issues

Legal Framework

The Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits health insurers from using genetic information in coverage and pricing decisions. However, GINA does not apply to life insurance, disability insurance, or long-term care insurance. Some states have enacted their own laws extending genetic nondiscrimination protections to these lines, but coverage is inconsistent across jurisdictions. In countries with universal health coverage, the debate focuses primarily on life and income protection insurance. Moratorium agreements (as in the UK's Code on Genetic Testing and Insurance) represent an alternative to legislation, with insurers voluntarily agreeing not to use genetic test results.

Actuarial and Ethical Considerations

From a pure actuarial perspective, genetic information could improve risk classification accuracy for products covering mortality and morbidity risk. However, its use raises profound ethical concerns about genetic privacy, discrimination against individuals for characteristics beyond their control, and potential deterrence of beneficial genetic testing. Adverse selection is the primary actuarial concern: if applicants know their genetic risk but insurers cannot use this information, high-risk individuals may purchase more coverage while low-risk individuals purchase less. Actuaries must weigh these competing considerations while complying with applicable laws and professional standards. The rapid advancement of genomic science and direct-to-consumer genetic testing makes this an increasingly urgent issue for the profession.