Need for federal legislation that protects the use of genetic information in employment and insurance coverage

Mar 25 2008

A policy monograph highlighting the need for federal protections against genetic discrimination in employment and insurance practices was released by the American College of Physicians (ACP).

The six policy positions ACP believes should be included in the federal protections are the focus of the policy paper. http://www.acponline.org/advocacy/where_we_stand/policy/index.html.

“While they're not quite there, Congress does continue to move closer to passing federal legislation that protects the use of genetic information in employment and insurance coverage decisions,” noted David C. Dale, MD, FACP president of the 125,000 member ACP. “This monograph is important for the ongoing discussion.”

ACP's first two positions consider insurance providers:

Position 1: Insurance providers should be prohibited from using an individual's genetic information to deny or limit health coverage or establish eligibility, enrollment, or premium contribution requirements.

Position 2: Insurance providers should be prohibited from establishing differential premiums based on an individual's genetic information or request for genetic screening.

ACP's policy positions result from a March 2007 survey conducted by the John Hopkins Genetics and Public Policy Center. It found that 86 percent of patients trust their physicians and 66 percent of patients trust genetic researchers with access to their genetic information. However, most people do not trust health insurers and employers not to misuse their genetic information through disclosure or discriminatory practices- should they have access to it.

The College's third position says:

Position 3: Employers should be prohibited from using an individual's genetic information in employment decisions, such as hiring, promoting, or terminating an employee or establishing the terms, conditions, and benefits or employment.

The ACP research looked at a report done by the National Partnership for Women and Families on behalf of the Coalition for Genetic Fairness that documents how fears of genetic discrimination negatively impact patient health care and financial well-being, public health, and scientific advancements. Examples include shielding genetic information from health care providers, refusing genetic testing, or undergoing testing using an alias.

Two more ACP positions which consider insurers and employers are:

Position 4: Insurers and employers should be prohibited from requiring individuals and families to undergo genetic testing

Position 5: Insurers and employers should be prohibited from collecting and/or disclosing an individual or family's genetic information. Written and informed consent should be required for each disclosure of genetic information and should include to whom the disclosure is made.

Finally, ACP considered specific Congressional considerations:

Position 6: Congress should establish comprehensive and uniform federal protection against genetic discrimination that closes the gaps in protection due to varying state laws. Federal protection should also cover ERISA health plans.