Developing genetic privacy legislation: the South Carolina experience

Area of Science:

• Genetics and Public Health Law
• Bioethics and Health Policy

Background:

• Advancements in genetic testing necessitate legal protections against health insurance discrimination.
• Existing federal laws like HIPAA (Health Insurance Portability and Accountability Act) offer limited protection, primarily for group health plans.

Purpose of the Study:

• To detail the development and enactment of South Carolina's genetic privacy legislation.
• To establish state-level protections against health insurance discrimination based on genetic information.

Main Methods:

• Formation of a University of South Carolina professional committee in 1996 to draft legislation.
• Review and adaptation of existing state genetic privacy laws, notably Virginia's.
• Legislative process involving navigation of opposition from the health insurance industry.

Main Results:

• Enactment of South Carolina legislation prohibiting health insurers from denying coverage or altering rates based on genetic information.
• Protection of genetic information privacy, requiring informed consent for genetic testing.
• The law's definition of genetic information explicitly includes family history of genetic disease.

Conclusions:

• The South Carolina legislation provides comprehensive genetic privacy protections beyond federal law.
• The enacted law serves as a model for other states seeking to protect citizens from genetic discrimination in health insurance.
• Successful navigation of legislative hurdles and industry opposition highlights the importance of advocacy for genetic privacy.