S306sFEB18

TheWeekInCongress.com

Week Ending February 18, 2005

S 306 to prohibit discrimination on the basis of genetic information with respect to health insurance and employment.

BRIEF

As science closes in on genetic coding for humans and uncovers genes that carry a propensity for illness later in life the question is raised if insurance companies can refuse coverage or increase premiums if a customer is found to have those damaging genes or if employment can be denied for the same reasons.

The bill says, “No” and adds some penalties for violations. For the risk management industry it would make all customers, at least as far as their genetic information is concerned, equal.

According to “findings” in the bill modern day genetic discrimination became evident in the 1970’s when the potential for sickle cell anemia, predominant in African-Americans, was the target of mandatory screening of all African-Americans for the disease. Congress passed a law withholding Federal funds from States that did not make the test voluntary. Now, many States have enacted genetic non-discrimination laws but bill supporters think it is more of a hodge-podge of laws needing the strength and uniformity of this Federal legislation.

A group health plan or health insurance company providing group health insurance must not deny membership or adjust a premium or contribution for a group or individual based on genetic information of a group member or that member’s family genetic data.

The insurers can not require the individual or family member to undergo genetic testing. A health care professional may ask the individual or family member to under go the test but may not require it.

Depending on the circumstance of the violation fines can be $100 per day per individual affected, a minimum of $2,500 and up to $500,000 per violation, re-institution of revoked coverage, 10 percent of the aggregate amount paid or incurred by an employer during a taxable year for a group health plan. Some penalties can be waived by the Secretary if lack of culpability is proven or the penalty is excessive relative to the violation.

The bill puts forth some exceptions when governing employment practices. Employers are not allowed to refuse employment based on genetic information or the employee’s refusal of genetic testing. Exceptions apply to genetic services offered as a wellness program, if the employee knowingly and voluntarily provides authorization, the information is given to a health care specialist but not to the employer “except in aggregate terms that do not disclose the identity of a specific employee.”

A genetic test includes analysis of DNA, RNA, chromosomes, proteins or metabolites that detects genotypes, mutations or chromosomal changes, but does not mean an analysis of proteins or metabolites that does not detect genotypes, mutations or chromosomal changes or are directly related to a manifested illness or condition.

The bill also applies to Medicare supplement insurance. Such providers may not refuse coverage or raise premiums based on genetic information.

Exceptions apply to genetic monitoring required due to toxic substances in the workplace.

The law would apply to labor organizations, training programs and employment agencies as well

Sponsor: Senator Olympia J. Snowe (R-ME)

Vote: Passed Senate (Feb. 17, 2005) (RV 11)

Cost to the taxpayers: No discernible cost.

MORE INFORMATION

Congress makes the following findings:

(1) Deciphering the sequence of the human genome and other advances in genetics open major new opportunities for medical progress. New knowledge about the genetic basis of illness will allow for earlier detection of illnesses, often before symptoms have begun. Genetic testing can allow individuals to take steps to reduce the likelihood that they will contract a particular disorder. New knowledge about genetics may allow for the development of better therapies that are more effective against disease or have fewer side effects than current treatments. These advances give rise to the potential misuse of genetic information to discriminate in health insurance and employment.

(2) The early science of genetics became the basis of State laws that provided for the sterilization of persons having presumed genetic ``defects'' such as mental retardation, mental disease, epilepsy, blindness, and hearing loss, among other conditions. The first sterilization law was enacted in the State of Indiana in 1907. By 1981, a majority of States adopted sterilization laws to ``correct'' apparent genetic traits or tendencies. Many of these State laws have since been repealed, and many have been modified to include essential constitutional requirements of due process and equal protection. However, the current explosion in the science of genetics, and the history of sterilization laws by the States based on early genetic science, compels Congressional action in this area.

(3) Although genes are facially neutral markers, many genetic conditions and disorders are associated with particular racial and ethnic groups and gender. Because some genetic traits are most prevalent in particular groups, members of a particular group may be stigmatized or discriminated against as a result of that genetic information. This form of discrimination was evident in the 1970s, which saw the advent of programs to screen and identify carriers of sickle cell anemia, a disease which afflicts African-Americans. Once again, State legislatures began to enact discriminatory laws in the area, and in the early 1970s began mandating genetic screening of all African Americans for sickle cell anemia, leading to discrimination and unnecessary fear. To alleviate some of this stigma, Congress in 1972 passed the National Sickle Cell Anemia Control Act, which withholds Federal funding from States unless sickle cell testing is voluntary.

(4) Congress has been informed of examples of genetic discrimination in the workplace. These include the use of pre-employment genetic screening at Lawrence Berkeley Laboratory, which led to a court decision in favor of the employees in that case Norman-Bloodsaw v. Lawrence Berkeley Laboratory (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress clearly has a compelling public interest in relieving the fear of discrimination and in prohibiting its actual practice in employment and health insurance.

(5) Federal law addressing genetic discrimination in health insurance and employment is incomplete in both the scope and depth of its protections. Moreover, while many States have enacted some type of genetic non-discrimination law, these laws vary widely with respect to their approach, application, and level of protection. Congress has collected substantial evidence that the American public and the medical community find the existing patchwork of State and Federal laws to be confusing and inadequate to protect them from discrimination. Therefore Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.

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