Genetic Information Nondiscrimination Act (GINA) (H.R.493.ENR) Signed

Called “the first civil rights law of the 21st Century,” President Bush signed the bill into law on May 21. According to Bush, "(This is) a piece of legislation which prohibits health insurers and employers from discriminating on the basis of genetic information. It protects our citizens from having genetic information misused, and this bill does so without undermining the basic premise of the insurance industry." It is meant to protect people from losing jobs or health insurances due to unfavorable genetic tests.

The employment provisions of GINA become effective 18 months, November 2009; provisions pertaining to group health plans become effective in May 2009, one year after the enactment date.

According to this new law, employers and insurance companies are forbidden from denying employment, promotions, or health coverage to people when genetic tests show they have a predisposition to cancer or any other diseases.

Major employment provisions of the bill include:

Nondiscrimination in Employment - This will prohibit employers from discriminating against individuals in the hiring, firing, compensation, terms, or privileges of employment on the basis of genetic information of the individual or family members. “Family Members” are defined as:

1. the spouse of the individual,
2. a dependent child of the individual, including a child who is born to or placed for adoption with the individual, or
3. parent, grandparent, or great-grandparent.

Restrictions in Collecting Genetic Information – GINA forbids an employer from requesting, requiring, or purchasing genetic information of the individual or family members except where the employer inadvertently requests or requires the information, (2) for genetic services offered by the employer (including wellness programs), (3) for purposes of complying with the Family and Medical Leave Act, and (4) where the employer purchases documents that are commercially available.

Genetic Monitoring in the Workplace Exception - GINA does allow for genetic monitoring of biological effects of toxic substances in the workplace, but only if (1) the employer provides written notice of the monitoring to the employee; (2) the employee agrees to the monitoring in writing or the monitoring is required by federal, state, or local law; (3) the employee is informed of the results of the test; (4) the monitoring conforms to any federal or state law, including rules promulgated by OSHA; and (5) the employer receives the results of the tests in aggregate terms.

Major health care provisions include:

Health Care Coverage Protections - GINA will prohibit an insured or self-insured health care plan, 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 would also be prevented from requiring a plan participant to undergo a genetic test to be eligible for coverage under a health care plan.

Exceptions for Genetic Testing for Health Care Treatment – GINA will allow a health care professional to request that a patient undergo a genetic test or advise a patient on the provision of genetic test or services through a wellness program.

Remedies for Violations of the Health Care Coverage Provisions - GINA will allow plan participants to receive injunctive relief under the Employee Retirement Income Security Act (ERISA) and have health care coverage reinstated back to the date of loss of coverage. Plan administrators could be personally liable for discriminating in coverage decisions and be assessed a penalty of $100 per day for the period of noncompliance. Plans could be fined a minimum penalty of $2,500 to $15,000 for more then de minimis violations up to a total of $500,000 for multiple violations.

Confidentiality of Genetic Health Care Information – GINA 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 would also provide participants with injunctive and equitable relief for violations of the confidentiality provisions of GINA. For violations of the privacy provisions of the law, civil monetary penalties of $100 per day up to $250,000 and 10 years in provision for egregious violations.

For more information, contact Lukins & Annis Employment Law Attorney Dan Danforth.

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