11998 Michael S. Yesley

Staff Attorney, Los Alamos National Laboratory. A.B. 1960, J.D. 1963, Harvard. Coordinator of the U.S. Department of Energy Program on the Ethical, Legal, and Social Implications of the Human Genome Project, 1990-1995. The views are the author's.

2. Moore's cells were obtained in the course of his treatment for leukemia at UCLA Medical Center and, unbeknownst to him, used to established a cell line that was patented. See Moore v. Regents of the University of California, 793 P.2d 479 (Cal. 1990), cert. denied, 499 U.S. 936 (1991).

3. See, e.g. Civil Rights Act of 1964, Pub. L. No. 88-352, 78 Stat. 241 (1964); American with Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 327 (1990).

4. For example, some genetic anti-discrimination laws bar insurers from requesting individuals to reveal whether they have been tested or the results of any genetic testing. See, e.g., WIS. STAT. 631.89 (1996).

5. Americans with Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 327 (1990).

6. See 2 EEOC COMPLIANCE MANUAL 902 (1995).

7. See Norman-Bloodsaw v. Lawrence Berkeley Lab., 135 F.3d 1260 (9th Cir. 1998) (reversing summary judgment against employees in part because material issues of fact existed as to whether the employees authorized or knew that a government-operated research facility employer was testing them for sensitive medical information).

8. See 1997 Ala. Acts 97-721; CAL. HEALTH & SAFETY CODE 1374.7 (West 1998); CAL. INS. CODE 742.405, 10123.3, 10140 (West 1998); COLO. REV. STAT. ANN. 10-3-1104.7 (West 1998); 1997 Conn. Pub. Acts 97-95; 1997 Fla. Laws ch. 97-182; GA. CODE ANN. 33-54-1 to 8 (1997); 1997 Haw. Sess. Laws 91; 1997 Ill. Pub. Act 90-25; IND. CODE ANN. 27-8-26-7 (Michie 1997); 1997 Kan. Sess. Laws 190; 1997 La. Acts 1418; MD. CODE ANN., INS. 223.1 (1997); MINN. STAT. 72A.139 (1997); 1997 Nev. Stat. 412; 1997 N.C. Sess. Laws 350; N.H. REV. STAT. ANN. 141-H:4 (1996); N.J. STAT. ANN. 17:48-6.18, 17:48A-6.11, 17:48E-15.2, 17B:26-3.2, 17B-27-36.2, 26:2J-15.1 (West 1998); OHIO REV. CODE ANN. 1742.42, 3901.49, 3901.50 (Banks-Baldwin 1997); OR. REV. STAT. 746.135 (1996); 1997 Tenn. Pub. Acts 121; 1997 Tex. Gen. Laws 1215; VA. CODE ANN. 38.2-508.4 (Michie 1997); WIS. STAT. 631.89 (1996).

9. See 1997 Ariz. Sess. Laws 229; 1997 Ill. Pub. Act 90-25; IOWA CODE ANN. 729.6 (West 1997); N.H. REV. STAT. ANN. 141:H-3 (1996); N.J. STAT. ANN. 10:5-12 (West 1998); 1997 N.C. Sess. Laws 350; N.Y. EXEC. LAW 296 (McKinney 1993 & Supp. 1997); OR. REV. STAT. 659.036, 659.227 (1996); R.I. GEN. LAWS 28-6.7-1 (1997); 1997 Tex. Gen. Laws 1215; WIS. STAT. 111.372 (1996).

10. Specifically, Alabama, Arizona, Connecticut, Florida, Hawaii, Illinois, Indiana, Kansas, Louisiana, Nevada, North Carolina, Tennessee, and Texas prohibited genetic discrimination last year.

11. In addition to the 13 states listed supra note 9, California, Colorado, Georgia, Iowa, Maryland, Minnesota, Montana, New Hampshire, New Jersey, New York, Ohio, Oregon, Rhode Island, Virginia, and Wisconsin have prohibited genetic discrimination.

12. See, e.g., CAL. HEALTH & SAFETY CODE 1374.7 (1993).

13. See, e.g., COLO. REV. STAT. ANN. 10-3-1104.7(1)(a) (West 1998); GA. CODE ANN. 33-54-1(1) (1997); 1997 La. Acts 1418; OR. REV. STAT. 659.715(1) (1996) (as amended by 1997 Or. Laws 780).

14. Philip R. Reilly, Governer Not Expected to Sign New Jersey Genetic Privacy Act, (visited Sept. 1, 1996) <http://www.geneletter.org/0996/governor.htm>.

15. See, e.g., 1997 Ark. Acts 997.

16. Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 110 Stat 1936 (1996).

17. The U.S. Department of Health and Human Services is responsible for enforcing Health Insurance Portability and Accountability Act provisions in states that do not pass and enforce laws imposing similar protections. U.S. General Accounting Office, Health Insurance Standards: New Federal Law Creates Challenges for Consumers, Insurers, Regulators, GAO/HEHS-98-67 (1998) at 5 (available at <http://frwebgate.access. gpo.gov/cgi-bin/useftp.cgi?IPaddress=wais.access.gpo.gov&filename=he98067.txt& directory=/diskb/wais/data/gao>).

18. See generally Health Insurance Portability and Accountability Act of 1996, supra note 16.

19. The present Congress is considering several comprehensive health privacy bills. Also, the "administrative simplification" provisions of the Health Insurance Portability and Accountability Act of 1996 require the Department of Health and Human Services to adopt uniform national standards, including measures to protect confidentiality, for the electronic processing of insurance claims.

20. See 18 U.S.C.A. 2710 (1996) (consumer privacy protection law providing a remedy for wrongful disclosure of video tape rental or sale records).

21. See, e.g., IOWA CODE ANN. 729.6(2)(a) (West 1997).

22. See, e.g., WIS. STAT. 631.89(2) (1996).

23. See, e.g., CAL. CIV. CODE 56.17 (West 1998); N.J. STAT. ANN. 10:5-45 (West 1998).

24. See, e.g., N.Y. CIV. RIGHTS LAW 79-1.3 (McKinney Supp. 1997).

25. See N.Y. INS. LAW 2612 (McKinney Supp. 1997).

26. See, e.g., MINN. STAT. 72A.139(5) (1997).

27. See, e.g., CAL. INS. CODE 10148(e) (West 1998); ARIZ. REV. STAT. ANN. 20-448E (West 1997).

28. See, e.g., 1997 N.C. Sess. Laws 350.

29. N.Y. EXEC. LAW 296(19)(b) (McKinney 1993 & Supp. 1997).

30. See, e.g., CAL. HEALTH & SAFETY CODE 1374.7(d) (West 1998); CAL. INS. CODE 10123.3(d) (West 1998) (covering genetic discrimination in health insurance, but see the narrower definition of "genetic characteristic" in California Insurance Code section 10147(b) for purposes of barring unfair (which is defined as not actuarially supported) genetic discrimination in life and disability insurance); 1997 Conn. Pub. Acts 95; 1997 Haw. Sess. Laws 91; N.J. REV. STAT. 10:5-5(oo) (1997) (covering genetic discrimination in employment, but see the narrower definition of "genetic characteristic" in New Jersey Revised Statutes sections 17:48-6.18, 17:48A-6.11, 17:48E-15.2, 17B:26-3.2, 17B-27-36.2, and 26:2J-15.1 for the purposes of barring genetic discrimination in health coverage); 1997 N.C. Sess. Laws 350; VA. CODE ANN. 38.2-508.4(A) (Michie 1997).

31. See 1997 Fla. Laws ch. 182; 1997 Tenn. Pub. Acts 121.

32. See 1997 Fla. Laws ch. 182; GA. CODE ANN. 33-54-2(1) (1997); 1997 Ill. Pub. Act 90-25; MINN. STAT. 72A.139, subd. (2)(b) (1997); N.Y. CIV. RIGHTS LAW 79-1.1(a) (McKinney Supp. 1997); 1997 Tenn. Pub. Acts 121; 1997 Tex. Gen. Laws 1215.

33. COLO. REV. STAT. ANN. 10-3-1104.7(2)(b) (West 1998); IND. CODE ANN. 27-8-26-7 (Michie 1997); 1997 Kan. Sess. Laws 190; OHIO REV. CODE ANN. 1742.42(A), 3901.49(A)(1), 3901.50(A)(1) (Banks-Baldwin 1997).

34. See 1997 Ariz. Sess. Laws 229; 1997 Conn. Pub. Acts 97-95; 1997 Haw. Sess. Laws 91; 1997 Ill. Pub. Act 90-25; IOWA CODE ANN. 729.6.1.c (West 1997); 1997 La. Acts 1418; MINN. STAT. 72A.139, subd. (2)(b) (1997); N.J. REV. STAT. 10:5-5.oo (1997) (covering genetic discrimination in employment, but the definitions used in the prohibitions of genetic discrimination in health coverage under New Jersey Revised Statutes sections 17:48-6.18, 17:48A-6.11, 17:48E-15.2, 17B:26-3.2, 17B-27-36.2, 26:2J-15.1 do not include gene products); N.Y. CIV. RIGHTS LAW 79-1.1(a) (McKinney Supp. 1997); 1997 N.C. Sess. Laws 350; R.I. GEN. LAWS 28-6.7-2 (1997); VA. CODE ANN. 38.2-508.4(A) (Michie 1997); WIS. STAT. 111.32, 942.07 (1996) (covering genetic discrimination in employment, but the definitions used in the prohibitions of genetic discrimination in health coverage under Wisconsin Statutes section 631.89 do not include gene products).

35. California, New Jersey, and Wisconsin use different definitions in different contexts. See supra notes 29 & 33.

36. MD. CODE ANN. INS. 223.1 (1997).

37. N.H. REV. STAT. ANN. 141:H-1.IV (1996).

38. 1997 La. Acts 1418 (relevant section codified at LA. REV. STAT. ANN. 213.7(A)(8) (West 1998)).

39. Joseph S. Alper & Jon Beckwith, Distinguishing Genetic from Nongenetic Medical Tests: Some Implications for Antidiscrimination Legislation, SCIENCE AND ENGINEERING ETHICS (forthcoming 1998).

40. See id.

41. NIH-DOE WORKING GROUP ON ETHICAL, LEGAL AND SOCIAL IMPLICATIONS OF HUMAN GENOME RESEARCH, GENETIC INFORMATION AND HEALTH INSURANCE: REPORT OF THE TASK FORCE ON GENETIC INFORMATION AND INSURANCE (1993) (available at <http://www.nhgri.nih.gov/About_NHGRI/Der/Elsi/itf.html>).

42. George J. Annas, et al., The Genetic Privacy Act and Commentary, Boston: Health Law Department, Boston University School of Public Health (1995), at 48.

43. N.Y. EXEC. LAW 292, subd. 21-B (McKinney 1993 & Supp. 1997) (emphasis added).

44. See Michael S. Yesley, Genetic Privacy, Discrimination and Social Policy: Challenges and Dilemmas, 2(1) MICROBIAL & COMPARATIVE GENOMICS, 19, 26-27 (1997).

45. See supra note 12.

46. See Moore v. Regents of the University of California, 793 P.2d. 479, 486 (Cal. 1990), cert. denied, 499 U.S. 936 (1991).

47. See id. at 487-97.

48. See id. at 519 (Mosk, J. dissenting).