Special Protections for Genetic Information
Many of Myriad’s products are genetics tests, and genetic information is collected and generated through the process of ordering and reporting the results of genetic testing. Genetic information typically includes family history, information related to genetic services and risk assessments and genetic test results. Federal and state governments recognize the value of genetic information to patients and healthcare providers and have put specific legal protections in place to prevent genetic discrimination (the misuse of genetic information) in health insurance and employment. Highlights of these protections are below:
- HIPAA, described under the MGL Privacy Practices page, recognizes genetic information as Protected Health Information (PHI) and specifies protecting the confidentiality of this information. HIPAA further states that “genetic information shall not be treated as a pre-existing condition in the absence of a diagnosis of the condition related to such information”. As an example, the presence of a gene mutation is not a pre-existing condition; however a breast cancer diagnosis could be considered a pre-existing or manifest condition.
- The Americans with Disabilities Act (ADA) provides additional protections regarding the use of genetic information by employers.
- Almost all states have additional laws that protect people from various forms of health insurance and employment discrimination based on genetic information.
- The Genetic Information Nondiscrimination Act of 2008 (GINA) is the most recent source of protection against genetic discrimination. GINA is a federal law that prohibits health insurers and employers from discrimination against an individual based upon genetic information.
- Health Insurance Protections:
- It is illegal for health insurers to request, require or use genetic information to make decisions about eligibility for health insurance or in determining premiums, contribution amounts of terms of coverage.
- Health insurers are prohibited from considering genetic information (e.g., test result or family history) a pre-existing condition, asking or requiring an individual to have a genetic test or using any genetic information they do have to discriminate against and individual.
- Employment Protections:
- Employers are prohibited from using genetic information to make decisions about hiring, firing, promotion, pay, privileges or terms of employment or to limit, segregate, classify or otherwise mistreat an employee.
- Employers are prohibited from requesting, requiring or purchasing genetic information about an individual or family member.
- There are some important limitations to the protections of GINA that should be considered in discussions with patients as appropriate, including that the law does not apply to life, long-term care or disability insurance; and it does not apply to manifest conditions or current health status. In addition, the employment protection component does not apply to employers with less than 15 employees.
- GINA does not apply to members of the Military, Veterans, individuals using the Indian Health Service and Federal Employees, as these groups have their own policies.
- Health Insurance Protections:
Selected resources for more information about Protections for Health and Genetic Information:
Resources for Patients:
- GINA Resources from the Genetics and Public Policy Center at Johns Hopkins University
- National Human Genome Research Institute (NHGRI) Genetic Discrimination Fact Sheet
- Equal Employment Opportunity Commission (EEOC) GINA Fact Sheet
- Federal Discrimination Laws other than GINA (HIPAA, ADA, others)
- Executive Order to Prohibit Genetic Discrimination in Federal Employment
Genetic Information Protection Resources
Resource to guide your discussions with Patients: