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Assessing Genetic Risks: Implications for Health and Social Policy
individual to someone other than that individual should ensure that the recipient of the genetic information has procedures in place to protect the confidentiality of the information.
Genetic Discrimination in Health Insurance
Legislation should be adopted to prevent medical risks, including genetic risks, from being taken into account in decisions on whether to issue or how to price health care insurance. Because health insurance differs significantly from other types of insurance in that it regulates access to health care—an important social good—risk-based health insurance should be eliminated. Access to health care should be available to every American without regard to the individual's present health status or condition; in particular, the committee recommends that insurability decisions not be based on genetic status (see Chapters 7 and 8).
Some of the committee's concerns about genetic discrimination in health insurance would be obviated by current proposals for national health insurance reform that would eliminate most, if not all, aspects of medical underwriting. The committee recommends that insurance reform preclude the use of genetic information in establishing eligibility for health insurance. As health insurance reform proposals are developed, those concerned with genetic disorders will need to assess whether they adequately protect genetic information and persons with genetic disorders from health insurance discrimination and discrimination in the provision of medical services (see Chapters 7 and 8).
Genetic Discrimination in Employment
Legislation should be adopted that forbids employers to collect genetic information on prospective or current employees unless it is clearly job related. Sometimes employers will have employees submit to medical exams to see if they are capable of performing particular job tasks. If an individual consents to the release of genetic information to an employer or potential employer, the releasing entity should not release specific information, but instead answer only yes or no regarding whether the individual was fit to perform the job at issue.
The committee urges the Equal Employment Opportunity Commission to recognize that the language of the Americans with Disabilities Act (ADA) provides protection for presymptomatic people with genetic risks for late-onset disorders, unaffected carriers of disorders that might affect their children, and individuals with genetic profiles indicating the possibility of increased risk of a multifactorial disorder. State legislatures should adopt laws to protect people from genetic discrimination in employment. In addition, ADA should be amended (and similar state statutes adopted) to limit the type of medical testing employers can request and to ensure that the medical information they can collect is job related.