12 2 STA T .8 82 PUBLIC LA W 11 0– 2 3 3 —M A Y 21 , 2008 ap a rticul ar d i so rd e r .N e wkn owled g ea b out genetics m a y allow f ort h ede v elopment of better therapies that are more effective against disease or have fewer side effects than current treat - ments. T hese 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 S tate laws that provided for the sterili z ation of persons having pre- sumed 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 I ndiana in 1907 . B y19 8 1,ama j ority of States adopted sterilization laws to ‘‘correct’’ apparent genetic traits or ten- dencies. M any of these State laws have since been repealed, and many have been modified to include essential constitutional re q uirements of due process and equal protection. H owever, the current e x plosion in the science of genetics, and the history of sterilization laws by the States based on early genetic science, compels C ongressional action in this area. ( 3 ) A lthough 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 discrimina- tion was evident in the 1970s, which saw the advent of pro- grams to screen and identify carriers of sickle cell anemia, a disease which afflicts African-Americans. O nce 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 F ederal 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 L awrence Berkeley Labora- tory, which led to a court decision in favor of the employees in that case Norman-Bloodsaw v. Lawrence Berkeley Labora- tory (13 5 F.3d 12 6 0, 1269 (9th Cir. 1998)). Congress clearly has a compelling public interest in relieving the fear of discrimi- nation 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 evi- dence 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 uni- form basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential
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