II Calendar No. 97 110th CONGRESS 1st Session S. 358 IN THE SENATE OF THE UNITED STATES January 22, 2007 Ms. Snowe (for herself, Mr. Kennedy, Mr. Enzi, Mr. Dodd, Mr. Gregg, Mr. Harkin, Ms. Murkowski, Ms. Mikulski, Mr. Hatch, Mr. Bingaman, Mr. Allard, Mrs. Murray, Mr. Reed, Mrs. Clinton, Mr. Obama, Mr. Sanders, Mr. Brown, Mr. Biden, Mr. Lautenberg, Mr. Nelson of Florida, Mr. Salazar, Mr. Cardin, Ms. Collins, Mr. Leahy, Ms. Cantwell, Mr. Warner, Mr. Hagel, Mr. Menendez, and Mr. Specter) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions March 29, 2007 Reported by Mr. Kennedy, with an amendment Strike out all after the enacting clause and insert the part printed in italic A BILL To prohibit discrimination on the basis of genetic information with respect to health insurance and employment.

1.

Short title; table of contents

(a)

Short Title

This Act may be cited as the Genetic Information Nondiscrimination Act of 2007. (b)

Table of Contents

The table of contents of this Act is as follows: Sec. 1. Short title; table of contents. Sec. 2. Findings. TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE Sec. 101. Amendments to Employee Retirement Income Security Act of 1974. Sec. 102. Amendments to the Public Health Service Act. Sec. 103. Amendments to title XVIII of the Social Security Act relating to Medigap. Sec. 104. Privacy and confidentiality. Sec. 105. Assuring coordination. Sec. 106. Regulations; effective date. TITLE II—PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC INFORMATION Sec. 201. Definitions. Sec. 202. Employer practices. Sec. 203. Employment agency practices. Sec. 204. Labor organization practices. Sec. 205. Training programs. Sec. 206. Confidentiality of genetic information. Sec. 207. Remedies and enforcement. Sec. 208. Disparate impact. Sec. 209. Construction. Sec. 210. Medical information that is not genetic information. Sec. 211. Regulations. Sec. 212. Authorization of appropriations. Sec. 213. Effective date. TITLE III—MISCELLANEOUS PROVISION Sec. 301. Severability.

2.

Findings

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.

1.

Short title; table of contents

(a)

Short Title

This Act may be cited as the Genetic Information Nondiscrimination Act of 2007. (b)

Table of Contents

The table of contents of this Act is as follows: Sec. 1. Short title; table of contents. Sec. 2. Findings. TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE Sec. 101. Amendments to Employee Retirement Income Security Act of 1974. Sec. 102. Amendments to the Public Health Service Act. Sec. 103. Amendments to title XVIII of the Social Security Act relating to medigap. Sec. 104. Privacy and confidentiality. Sec. 105. Assuring coordination. Sec. 106. Regulations; effective date. TITLE II—PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC INFORMATION Sec. 201. Definitions. Sec. 202. Employer practices. Sec. 203. Employment agency practices. Sec. 204. Labor organization practices. Sec. 205. Training programs. Sec. 206. Confidentiality of genetic information. Sec. 207. Remedies and enforcement. Sec. 208. Disparate impact. Sec. 209. Construction. Sec. 210. Medical information that is not genetic information. Sec. 211. Regulations. Sec. 212. Authorization of appropriations. Sec. 213. Effective date. TITLE III—MISCELLANEOUS PROVISION Sec. 301. Severability.

2.

Findings

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 1908. 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.

March 29, 2007 Reported with an amendment