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Focus on the Law: Genetic information discrimination

By Sharon Frankenberg,
Attorney at Law

With the tremendous advances we have seen in medicine, and particularly in genetic research, the law has to try to anticipate problems resulting from these advances.  One area that I want to focus on today is laws relating to genetic information discrimination in employment and health insurance.

“Genetic information” includes family medical history because that information is often used to determine whether someone has an increased risk of getting a disease, disorder, or condition in the future.  Information about an individual’s genetic tests and genetic tests on family members is included.  Genetic information also includes an individual’s request for, or receipt of, genetic services, or the participation in clinical research that includes genetic services and the genetic information of a fetus or any embryo legally held by the individual or family member of the individual.  This type of information is important because it helps people understand health conditions that run in their families and risks of developing certain health conditions or having a child with certain conditions.  It helps doctors provide better health care and helps individuals make important lifestyle and medical decisions.

The Genetic Information Nondiscrimination Act of 2008 (GINA) was signed into law by President Bush.  GINA applies only to employers with 15 or more employees.  It also applies to employment agencies, labor organizations and joint labor-management training and apprenticeship programs.  It does not apply to employment in the US military.  The law forbids discrimination on the basis of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoff, training, fringe benefits, or any other term or condition of employment.  An employer may never use genetic information to make an employment decision because genetic information is not relevant to an individual’s current ability to work.  GINA also makes it illegal to harass a person because of his or her genetic information.

A charge of genetic information discrimination must be brought within 180 days under federal law and federal employees have 45 days to contact an EEO Counselor.  It is illegal to retaliate against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding or otherwise opposing discrimination.

GINA prohibits issuers of health insurance from discrimination on the basis of the genetic information of enrollees.  Health insurance issuers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions.  They may not request or require individuals or their family members to undergo genetic testing or to provide genetic information.

GINA does not apply to health insurance through the TRICARE military health system, the Indian Health Service, the Veterans Health Administration, or the Federal Employees Health Benefits Program.  The law does not cover long term care insurance, life insurance or disability insurance.

As our medical records and genetic information data are compiled and digitized, we face an increasing risk of loss of our privacy and security.   Time will tell if these legal protections are enough.

 

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