110 HR 493 RH: Genetic Information Nondiscrimination Act of U.S. House of Representatives 2007-03-29 text/xml EN Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.

IB Union Calendar No. 46 110th CONGRESS 1st Session H. R. 493 [Report No. 110–28, Parts I, II, and III] IN THE HOUSE OF REPRESENTATIVES January 16, 2007 Ms. Slaughter (for herself, Mrs. Biggert, Ms. Eshoo, Mr. Walden of Oregon, Mr. George Miller of California, Mr. Dingell, Mr. Rangel, Mr. Ackerman, Mr. Alexander, Mr. Allen, Mr. Bachus, Mr. Baker, Ms. Baldwin, Mr. Bartlett of Maryland, Mr. Bilirakis, Mrs. Blackburn, Mr. Blumenauer, Mrs. Bono, Mr. Boustany, Mr. Brown of South Carolina, Ms. Ginny Brown-Waite of Florida, Mr. Burton of Indiana, Mr. Calvert, Mrs. Capito, Mrs. Capps, Mr. Capuano, Mr. Castle, Mr. Chabot, Mr. Chandler, Mr. Cole of Oklahoma, Mr. Conaway, Mr. Conyers, Mrs. Davis of California, Mr. Tom Davis of Virginia, Mr. Davis of Kentucky, Ms. DeGette, Mr. Dicks, Mr. Doggett, Mrs. Drake, Mr. Duncan, Mr. Ehlers, Mr. Emanuel, Mrs. Emerson, Mr. Engel, Mr. English of Pennsylvania, Mr. Farr, Mr. Ferguson, Mr. Frelinghuysen, Mr. Gallegly, Mr. Gerlach, Mr. Gilchrest, Mr. Gillmor, Mr. Gohmert, Ms. Granger, Mr. Gene Green of Texas, Mr. Grijalva, Mr. Hall of Texas, Mr. Hastings of Washington, Mr. Herger, Ms. Herseth, Mr. Hinojosa, Ms. Hirono, Mr. Hobson, Mr. Hoekstra, Ms. Hooley, Mr. Hunter, Mr. Israel, Mr. Johnson of Illinois, Mr. Jones of North Carolina, Mr. Kanjorski, Mr. Kennedy, Mr. Kildee, Mr. King of New York, Mr. Kirk, Mr. Kucinich, Mr. Kuhl of New York, Mr. LaHood, Mr. Latham, Mr. Lewis of Kentucky, Mr. Lipinski, Mr. LoBiondo, Ms. Zoe Lofgren of California, Mr. Lucas, Mrs. Maloney of New York, Mr. Manzullo, Mr. Marchant, Mr. McCaul of Texas, Ms. McCollum of Minnesota, Mr. McCotter, Mr. McHugh, Mr. McNulty, Mr. Mica, Mr. Moran of Virginia, Mrs. Myrick, Mr. Neugebauer, Mr. Norwood, Mr. Olver, Mr. Pearce, Mr. Pitts, Mr. Platts, Mr. Porter, Mr. Price of North Carolina, Ms. Pryce of Ohio, Mr. Putnam, Mr. Ramstad, Mr. Regula, Mr. Reichert, Mr. Reynolds, Mr. Roskam, Ms. Ros-Lehtinen, Mr. Ryan of Wisconsin, Mr. Saxton, Ms. Schakowsky, Mr. Schiff, Mr. Sessions, Mr. Shays, Mr. Simpson, Ms. Solis, Mr. Souder, Mr. Stark, Mr. Thompson of California, Mr. Tiberi, Mr. Tierney, Mr. Udall of New Mexico, Mr. Upton, Mr. Van Hollen, Mr. Walsh of New York, Mr. Wamp, Ms. Watson, Mr. Waxman, Mr. Weller of Illinois, Mr. Wexler, Mr. Whitfield, Mr. Wicker, Mr. Wilson of South Carolina, Mr. Wolf, Ms. Woolsey, Mr. Yarmuth, Mr. Young of Florida, Mr. Crowley, Mr. Holt, Mr. Jindal, Mr. LaTourette, and Mr. Tancredo) introduced the following bill; which was referred to the Committee on Education and Labor, and in addition to the Committees on Energy and Commerce and Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned March 5, 2007 Reported from the Committee on Education and Labor with an amendment Strike out all after the enacting clause and insert the part printed in italic March 5, 2007 Referral to the Committees on Energy and Commerce and Ways and Means extended for a period ending not later than March 23, 2007 March 23, 2007 Referral to the Committees on Energy and Commerce and Ways and Means extended for a period ending not later than March 26, 2007 March 26, 2007 Reported from the Committee on Ways and Means with an amendment Strike out all after the enacting clause and insert the part printed in boldface roman March 26, 2007 Referral to the Committee on Energy and Commerce extended for a period ending not later than March 29, 2007 March 29, 2007 Additional sponsors: Mr. Hoyer, Ms. Castor, Mrs. Jo Ann Davis of Virginia, Mr. Rothman, Mr. Feeney, Mr. Poe, Mr. Meehan, Mr. DeFazio, Mr. Weiner, Mr. Oberstar, Mr. Pallone, Mr. McGovern, Mr. Miller of North Carolina, Ms. Norton, Mr. Pascrell, Ms. Schwartz, Mr. Frank of Massachusetts, Mr. Larson of Connecticut, Ms. Harman, Mr. Lewis of Georgia, Mr. Towns, Mr. Hinchey, Mr. Wu, Mr. Langevin, Mrs. McCarthy of New York, Mr. Berry, Mr. Clay, Mr. Higgins, Mrs. Lowey, Mr. Hare, Mr. Spratt, Mr. McDermott, Ms. Linda T. Sánchez of California, Ms. DeLauro, Mr. Moore of Kansas, Mr. Payne, Mr. Berman, Mr. Levin, Mr. Courtney, Mr. Murtha, Mr. Cleaver, Mr. Gordon of Tennessee, Mr. Boucher, Mr. Sestak, Mr. Kind, Mr. Costello, Ms. Shea-Porter, Mr. Abercrombie, Mr. Cummings, Mr. Sherman, Mr. Doyle, Mr. Bishop of New York, Mr. Scott of Virginia, Mr. Markey, Mr. Loebsack, Mrs. Musgrave, Ms. Berkley, Ms. Sutton, Mr. Stupak, Mr. Cohen, Mr. Melancon, Mr. Obey, Mrs. Tauscher, Mr. Pickering, Mr. Matheson, Mr. Wynn, Mr. Cramer, Mr. Etheridge, Mr. Ross, Ms. Bean, Mr. Rush, Mr. Davis of Illinois, Mr. Altmire, Mr. Gonzalez, Mr. Cooper, Mr. Butterfield, Mr. Inslee, Mr. Udall of Colorado, Mr. Davis of Alabama, Mr. Hill, and Mr. Fattah March 29, 2007 Reported from the Committee on Energy and Commerce with an amendment; committed to the Committee of the Whole House on the State of the Union and ordered to be printed Strike out all after the enacting clause and insert the part printed in boldface italic For text of introduced bill, see copy of bill as introduced on January 16, 2007 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 the Internal Revenue Code of 1986. Sec. 104. Amendments to title XVIII of the Social Security Act relating to Medigap. Sec. 105. Privacy and confidentiality. Sec. 106. Assuring coordination. Sec. 107. 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. 104A.  Privacy and confidentiality. Sec. 105. Assuring coordination. Sec. 106. Relationship to title II with respect to enforcement. Sec. 107. 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.

March 29, 2007 Reported from the Committee on Energy and Commerce with an amendment; committed to the Committee of the Whole House on the State of the Union and ordered to be printed