WORKPLACE LAW -
Generic Information Nondiscrimination Act
Question:
Can you tell me about this new bill that President Bush signed regarding civil rights and genetic information? I believe it somehow prevents discrimination based on genetics, but I’m not sure I understand what that means or how the law is supposed to work.
Answer:
On May 21, President Bush signed into law the Genetic Information Nondiscrimination Act (GINA). The new law, which has been called “the first civil rights law of the 21st Century,” will prohibit discrimination against individuals on the basis of their genetic information in both employment and health care.
The employment provisions of GINA become effective 18 months after the President signed the bill, and will therefore go into effect in November of 2009. The provisions of the bill that relate to group health plans become effective in May 2009, one year after the date of the bill’s signing.
This legislation will have a number of implications for employers and the ways in which they administer their healthcare programs. GINA will prohibit an employer from discriminating against an individual in the hiring, firing, compensation, terms, or privileges of employment on the basis of genetic information of the individual or family member of the individual. GINA defines a family member as the individual’s spouse, dependent child, or parent, grandparent, or great-grandparent.
California law already prohibits employment discrimination on the basis of an individual’s “medical condition,” which includes a person’s genetic characteristics. The new federal law actually broadens genetic discrimination protections for employees.
The new federal law also prohibits an employer from requesting, requiring, or purchasing genetic information about an individual or their family member. There are several exceptions, including when the employer inadvertently requests or requires the information, or if the request is done in conjunction with genetic services offered by the employer (including wellness programs).
The bill, which passed the Senate unanimously and passed the House by a vote of 414 to 1, prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The measure, which has been debated in Congress for the last 13 years, will allow individuals to take advantage of personalized medicine without fear of discrimination based on their genetic makeup.
Proponents of the new law believe that it will help usher in an age of genetic medicine in which DNA tests might help predict if a person is at risk for a disease, allowing action to be taken to prevent disease. Some of these tests already exist, such as one for breast cancer risk, and new ones are being introduced regularly. The concern has been that many people are afraid of taking such genetic tests for fear that the results would be used to deny them employment or health insurance. For purposes of GINA, genetic information will include not only tests that determine variations in a person’s DNA, but also a family history of a particular disease.
GINA also prohibits health care plans from denying eligibility to enroll for health care coverage, or from adjusting premium or contribution rates under a plan, based on an individual or family member's genetic information. Health care plans will also be prevented from requiring a plan participant to undergo a genetic test to be eligible for coverage under a health care plan, although GINA does allow a health care professional to request that a patient undergo a genetic test.
Remedies for violations of the health care coverage provisions include injunctive relief under the Employee Retirement Income Security Act (ERISA), and having health care coverage reinstated back to the date of loss of coverage. Plan administrators could also be personally liable for discriminating in coverage decisions, and may be assessed a penalty of $100 per day for the period of noncompliance. Plans could be fined a penalty of $2,500 to $15,000 for violations, up to a total of $500,000 for multiple violations. GINA also requires that the disclosure of protected genetic health care information would be governed by the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The law will provide participants with injunctive and equitable relief for violations of its confidentiality provisions, including civil monetary penalties.
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