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Assessing Genetic Risks: Implications for Health and Social Policy
is clearly job related. Sometimes employers will have employees submit to medical exams to see if they are capable of performing particular job tasks. The committee recommends that 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 recommends that the EEOC recognize that the language of the Americans with Disabilities Act provides protection for presymptomatic people with a genetic profile for late-onset disorders, unaffected carriers of disorders that might affect their children, and people with genetic profiles indicating the possibility of increased risk of a multifactorial disorder. The committee also recommends that state legislatures adopt laws to protect people from genetic discrimination in employment. In addition, the committee recommends an amendment to the ADA (and adoption of similar state statutes) limiting the type of medical testing employers can request or the medical information they can collect to that which is job related.
Ultimately, new laws on a variety of other topics may also be necessary to protect autonomy, privacy, and confidentiality in the genetics field, and to protect people from inappropriate decisions based on their genotypes.130 The ability of genetics to predict health risks for asymptomatic individuals and their potential offspring presents challenges in the ethical and social spheres. The committee recommends that careful consideration be given to the development of policies for the implementation of genetic testing and the handling of genetic test results.
March of Dimes Birth Defects Foundation, Genetic Testing and Gene Therapy: National Survey Findings 18 (September 1992). New York.
See, e.g., Satz v. Perlmutter, 362 So.2d 160 (Fla. App. 1978) aff'd 379 So.2d 359 (Fla. 1980).
See, e.g., Salgo v. Leland Stanford Jr. Univ. Bd. of Trustees, 154 Cal. App. 2d 560, 317 P.2d 170 (1957); Canterbury v. Spence, 464 F.2d 772 (D.C. Cir.), cert. denied, 409 U.S. 1064 (1972).
Gates v. Jensen, 92 Wash.2d 246, 595 P.2d 919 (1979).
Salgo v. Leland Stanford Jr. Univ. Bd. of Trustees, 154 Cal. App. 2d 560, 317 P.2d 170 (1957).
Kogan v. Holy Family Hospital, 95 Wash.2d 306, 622 P.2d 1246 (1980).
See, e.g., Becker v. Schwartz, 46 N.Y.2d 401, 386 N.E.2d 807, 413 N.Y.S.2d 895 (1978). For a review of relevant cases, see Lori B. Andrews, ''Torts and the Double Helix: Liability for Failure to Disclose Genetic Risks," 29 U. Houston L. Rev. 143 (1992).
L. Andrews, "My Body, My Property," 16(5) Hastings Center Report 28 (1986). See also Moore v. Regents of the University of California.
The federal regulations governing informed consent in the context of human experimentation provide that informed consent is not necessary for research on pathological or diagnostic specimens "if these sources are publicly available or if the information is recorded by the investigator in such a manner that subjects cannot be identified, directly or through identifiers linked to the subjects." 45 C.F.R. § 46.101(b)(5) (1991).
Similarly, some state human experimentation laws do not seem to extend their coverage to