Physicians' Group Calls for Enhanced Rules Governing Genetic Discrimination

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By Michael Bologna

CHICAGO--Citing what it called deficiencies in the Genetic Information Nondiscrimination Act, the American Medical Association June 18 endorsed a report calling for a more robust set of federal rules to protect Americans from genetic discrimination in the health system and in the workplace.

The AMA's House of Delegates, which directs association advocacy policy for the coming year, expressed its support for a report recommending three changes to remedy inadequacies in federal and state law addressing genetic discrimination.

The report recommended an AMA policy that: “strongly opposes’’ discrimination based on an individual's genetic information; directs the AMA to pursue legislation that would establish “robust and comprehensive protections’’ against genetic discrimination and misuse of genetic information; and supports education to health care providers and patients on the protections against genetic discrimination afforded under federal and state laws.

“While the passage of GINA created important legal protections against genetic discrimination, the law leaves patients vulnerable to discrimination in areas such as life, long-term care and disability insurance,’’ AMA board member Dr. William Kobler said following the action. “Genomic medicine advancements are enabling better individualized patient care, but it is important to make sure that this unique personal information is not used against patients.”

Deficiencies in GINA Cited
The AMA's report pointed out that GINA does not prohibit health insurance underwriting or employment decisions based on an individual's current health status. Instead, the 2008 law protects individuals with a genetic predisposition to disease that has not manifested. The protection extends whether the individual has knowledge of the predisposition based on his or her own genetic test results, or the genetic test results or manifestation of disease in a family member.

“GINA is based on the premise that it is unfair for a health insurer or an employer to make a decision about an individual based on a condition that may or may not actually develop in the future,’’ the report said.

The report cited several substantive deficiencies in GINA that it said raise continuing concerns about discrimination in the health system and the workplace. Among these are:

  • GINA does not address genetic discrimination in the context of life, long-term care, or disability insurance;

  • employers with 15 or fewer employees are exempt from GINA's employment discrimination provisions;

  • patients obtaining care through the Veterans Health Administration and the Indian Health Service are not protected by GINA; and

  • federal civilian employees participating in the Federal Employees Health Benefits Program and U.S. military personnel participating in the Tricare program are not protected by GINA.

In addition, the report pointed out that other federal laws provide only “partial protection’’ against genetic discrimination.

For instance, the Affordable Care Act protects against denial of health insurance because of pre-existing conditions, but does not address genetic information as a pre-existing condition.

The Health Insurance Portability and Accountability Act prevents health insurers from boosting the cost of a covered individual's premium discriminatorily, but insurance companies are permitted to raise an employer's group premium based on the genetic information of its pool of employees.

In the employment context, the report said the Americans with Disabilities Act does not appear to protect against genetic discrimination in employment decisions.

Variation in State Laws
The AMA report also cited the “patchwork’’ of state laws addressing genetic discrimination that it said create additional confusion. Just under half of states have adopted laws providing additional protection against discrimination in aspects of life, long-term care, and disability insurance, as well as in other areas not covered under GINA, the report said.

These various deficiencies and inconsistencies create a climate of confusion and fear for health care consumers, and prevents physicians from providing meaningful care to their patients, according to the report.

“The shortcomings of GINA and other federal laws along with the inconsistency in state laws leave many patients vulnerable to genetic discrimination and misuse of their genetic information,’’ the report concluded. “Further, physicians are placed in the difficult position of explaining to patients confusing genetic discrimination protections that vary by state and by individual circumstance.’’

By Michael Bologna

An initial draft of the AMA report is available at /uploadedfiles/BNA_V2/Images/From_BNA_V1/News/a13-addendum-refcomm-e(2).pdf.

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