International Society of Nurses in Genetics

Ethical Issues

Genetics Information and Non-discrimination Act (GINA)

NIH Bioethics Resources on the Web

ELSI Research and Resources
HGPI's site for the joint NIH and DOE ELSI program

National Human Genome Research Institute (NHGRI) : ELSI

Health Insurance Portability and Accountability Act of 1996

The main provisions of HIPAA, effective July 1, 1997:

  • Prohibits denial of insurance because of pre-existing medical and genetic conditions
  • Requires insurance companies to offer policies to small businesses and employers
  • Guarantees insurance policy renewal, providing continuous premiums and coverage
  • Provides for continuity and portability of health insurance coverage for persons changing employment

However, even with HIPAA provisions, there are large gaps in coverage for many people:

  • Only persons currently enrolled in health plans as of July 1, 1997 are covered by HIPAA provisions
  • People receiving health care policies as a result of employment in large, multi-state, self-insured insurance companies are not protected by these provisions
  • Because there are no caps on premiums, a person can effectively be denied coverage because of inability to pay increased rates