Genetic non-discrimination: examining the implications for workers and employers : hearing before the Subcommittee on Employer-Employee Relations of the Committee on Education and the Workforce, U.S. House of Representatives, One Hundred Eighth Congress, second session, July 22, 2004

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Page 79 - Under the Health Insurance Portability and Accountability Act The Health Insurance Portability and Accountability Act of 1996 [Pub.
Page 100 - I know also, that laws and institutions must go hand in hand with the progress of the human mind. As that becomes more developed, more enlightened, as new discoveries are made, new truths disclosed, and manners and opinions change with the change of circumstances, institutions must advance also, and keep pace with the times.
Page 74 - NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability, and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
Page 77 - Secondly, many individuals are falsely labeled "at risk" due to the genetic screening of family members2'. Thirdly, genetic markers are generally not valid predictors of the nature, severity and course of disease. For most genetic disease, the onset date, severity of symptoms, and efficacy of treatment and management are highly variable, with some people identified by screening remaining symptom-free and others progressing to disabling illness27.
Page 17 - The American Academy of Actuaries is the public policy organization for actuaries of all specialties within the United States. In addition to setting qualification standards and standards of actuarial practice, a major purpose of the Academy is to act as the public information organization for the profession. The Academy is nonpartisan and assists the public policy process through...
Page 77 - The results of genetic-based diagnosis and prognosis are uncertain for many reasons. First, the sensitivity of genetic testing is limited by the known mutations in a target population. Many individuals with a genetic predisposition for a particular disease will not be identified because these markers are not among the known genetic mutations25. Secondly, many individuals are falsely labeled "at risk" due to the genetic screening of family members2'.
Page 77 - There are existing laws that may prohibit genetic discrimination in some contexts. However, these laws do not reach much of the discrimination that occurs and, in some cases, may be interpreted not to apply to genetic discrimination at all. The Americans with Disabilities Act30 The Americans with Disabilities Act (ADA), an anti-discrimination law, protects individuals who have an impairment that substantially limits them in a major life activity, who have a record of such an impairment, or who are...
Page 82 - ... programs, as well as programs designed to improve maternal and child health. AWHONN is a membership organization of 22,000 nurses whose mission is to promote the health of women and newborns. AWHONN members are registered nurses, nurse practitioners, certified nurse midwives, and clinical nurse specialists who work in hospitals, physicians' offices, universities and community clinics across North America as well as in the Armed Forces around the world.
Page 76 - Science magazine reported that in a study of 332 individuals with one or more family members with a genetic disorder who are affiliated with genetic support groups, 40 percent of the respondents recalled being specifically asked about genetic diseases or disabilities on their applications for health insurance12. Twenty-two percent of the respondents said they or a family member were refused health insurance as a result of the genetic condition in the family13. Fifteen percent of the respondents reported...

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