Landmark Genetic Non-Descrimination Legislation Becomes Law

June 1, 2008

(Originally published by the NH Business Review on June 20)

Dianne is a healthy female employee of XYZ Hospital. Her mother recently died of breast cancer, and her doctor has suggested that she take part in a clinical trial which would involve genetic testing in order to assess her propensity for contracting the disease in the future and to consider her options for preventative treatment. Dianne is concerned because some of the testing will take place at the hospital where she works. She is concerned about her employer and her medical insurance carrier obtaining information about the results of the tests and how that might impact her employment and her insurability. Does the law protect Diane or require her employer to take any particular action?

A bill known as “The Genetic Non-Discrimination Act of 2008” (“GINA”) was signed on May 21, 2008 by President George W. Bush. The essence of the law is to prohibit employers and health insurance companies from discriminating against or refusing coverage to individuals based on the results of genetic testing. Simply said, such organizations will be prevented from holding genetic information against individuals, requiring them to participate in genetic testing or divulging genetic information.

The bill has been the subject of debate in political and medical circles since it was first introduced in 1995. At the inception of the discussion, there were fewer than 100 effective genetic tests in use. Today, the number of available tests has grown dramatically and exceeds 1200. Genetic testing is poised to lead to breakthroughs in research on cancer, Alzheimer’s disease, heart disease and countless other conditions. Despite having passed the Senate in different variations several times, this is the first time the legislation received overwhelming bipartisan support and the promise of the President to sign it into law.

The legislation was introduced in an effort to sooth the concerns of employees who were resisting certain medical tests and treatment out of concern that information gained through such tests would be used against them. Should a healthy woman whose mother has breast cancer be subject to scrutiny by her health insurer because family history is a risk factor? Should an employee’s genetic tests which show the potential for an as yet incurable disease to manifest itself be a basis on which to make employment decisions?

The provisions of GINA which govern health insurance plans take the form of amendments to the Employee Retirement Income Security Act (“ERISA”) and the Public Health Service Act. They are scheduled to take effect in May, 2009. The amendments prohibit an insurer from making enrollment decisions based on genetic information. They also specify that neither a group health insurance plan nor a health insurance company offering group health insurance in connection with a group health plan may adjust premium or contribution amounts for healthy individuals on the basis of genetic information. Nor will a health insurance carrier be allowed to request an individual or a family member of an individual to undergo a genetic test. The provisions of the law affecting insurers will be administered by the United States Department of Labor.

The law does not prohibit insurers from making premium or eligibility decisions based on relevant health factors such as pre-existing conditions or medical history. It does prohibit discriminating against currently healthy individuals based on the results of tests which might show genetic predisposition to develop a condition in the future or the medical history of a family member.

The employment provisions of the law take effect in November of 2009 and will be enforced by the Equal Employment Opportunity Commission (“EEOC”). The law prohibits employers from making decisions concerning hiring, firing, pay or promotion on the basis of genetic information.

“Genetic Information” is defined in the Act as 1) the results of an individual’s genetic tests; 2) the results of the genetic tests of family members of an individual; or 3) the manifestation of a disease or disorder in an individual’s family members. A genetic test is an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that will detect genotypes, mutations or chromosomal changes. Family members include an individual’s spouse, dependent child (including an adopted child), parent, grandparent or great-grandparent.

Although the law specifically prohibits an employer from utilizing genetic information to the detriment of the employee, there are certain exceptions including:

  • Inadvertent receipt of the information
  • Obtaining the information in connection with genetic services provided by the employer including wellness programs
  • Information needed to comply with the Family and Medical Leave Act
  • Obtaining information in connection with the purchase of commercially available documents
  • Genetic monitoring of biological effects of toxic substances in the workplace

GINA also requires that the disclosure of protected genetic information be governed by the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”). Both ERISA and HIPAA provide the remedies of injunctive relief, civil penalties and the possible imposition of personal liability against plan administrators. Egregious violations of HIPAA can even result in criminal penalties including jail time.

Diane’s situation is just the scenario envisioned by the proponents of GINA. Employers must modify their discrimination policies to make certain to include genetic information. It is also critical that mechanisms be put in place to ensure that personal health information is protected and that no employee is required to submit to genetic tests as a condition of employment or health care coverage.

This bill is being viewed as the first expansion of civil rights on the federal level in the 21st century. The hope is that the bill’s passage will encourage individuals to participate in medical trials and testing and to seek individualized testing and treatment early (when family health conditions suggest it might be wise) without fear of losing their privacy or having their genetic information used against them or their family members.

Charla Bizios Stevens is an attorney in the Employment Law and Health Law Practice Groups at the law firm of McLane, Graf, Raulerson & Middleton, P.A. Charla can be reached at 603-628-1363 or The McLane Law Firm is the largest law firm in the State of New Hampshire, with offices in Concord, Manchester and Portsmouth.