1 Prior to the 1990s, state laws on genetic discrimination primarily prohibited discrimination on the basis of sickle cell trait or disease. For an overview of the history of laws on genetic discrimination, see Philip R. Reilly, Laws to Regulate the Use of Genetic Information, in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era 369-91 (Mark A. Rothstein ed., 1997). See also Nat'l Human Genome Research Inst., Genetic Information and Health Insurance Enacted Legislation, at http://www.nhgri.nih.gov/Policy_and_public_affairs/ Legislation/insure.htm (reflecting legislation enacted as of July 26, 2001).

2 Schmickle, Sharon, Scientists Advocate Genetic Privacy Rules, Star Tribune, Feb. 19, 2001, at 10AGoogle Scholar.

3 H.R. 602, 107th Cong. (2001); S. 318, 107th Cong. (2001).

4 See, e.g., The Potential for Discrimination in Health Insurance Based on Predictive Genetic Tests, hearing before the House Comm. On Energy and Commerce, Subcomm. on Commerce, Trade, and Consumer Protection, 107th Cong. 41 (2001); Hearing on Fulfilling the Promise of Genetics Research: Ensuring Nondiscrimination in Health Insurance and Employment, Before the Sen. Comm. on Health, Education, Labor, and Pensions, 107th Cong. (2001).

5 E.E.O.C. Notice 915.002, Enforcement Guidance: Preemployment Disability-Relation Questions and Medical Examinations (Oct. 10, 1995), available at http://www.eeoc.gov/docs/ preemp.html.

6 E.E.O.C. Notice 915.002, Enforcement Guidance: Disability-Related Inquiries and Medical Examinations of Employees under the American with Disabilities Act (ADA) (July 27, 2000), available at http://www.eeoc.gov/docs/guidance-inquiries.html.

7 Press Release, E.E.O.C, EEOC Petitions Court to Ban Genetic Testing of Railroad Workers in First E.E.O.C. Case Challenging Genetic Testing Under Americans with Disabilities Act (Feb. 9, 2001), available at http://www.eeoc.gov/press/2-9-01-c.html.

8 The EEOC announced that it settled its ADA suit with Burlington Northern Santa Fe Railway on April 18, 2001. See Press Release, E.E.O.C, EEOC Settles ADA Suit against BSNF for Genetic Bias (Apr. 18, 2001), available at http://www.eeoc.gov/press/4-18-01.html.

9 Whether the plaintiffs in the Burlington case file any subsequent complaints, particularly in a state court, remains to be seen.

10 Reilly, supra note 1, at 376.

11 Id.

12 An Act Relative to Insurance and Genetic Testing and Privacy, 2000 Mass. Acts 254.

13 Id. § 1.

14 Mass. Gen. Laws ch. 111, § 70G(5)(c) (2002).

15 Id.

16 Mass. Gen. Laws ch. 151B, § 4; ch. 175, § 120E; ch. 176A, § 3B; ch. 176G, § 24.

17 Mass. Gen. Laws ch. 151B, § l.

18 See Andrews, Lori B., A Conceptual Framework for Genetic Policy: Comparing the Medical, Public Health, and Fundamental Rights Models, 79 Wash. U. L.Q. 221, 243 n.152 (2001)Google Scholar.

19 See id. HD is a rare progressive and fatal neurological disorder that usually manifests in affected individuals between the ages of thirty and fifty. The median survival time after onset is fifteen to eighteen years. See Huntington's Disease Society of Am., What is Huntington's Disease (Mar. 20, 2002), at http://www.hdsa.org. Predictive testing is available for at-risk individuals who want to know if they are affected, but some individuals nevertheless decline testing and prefer not to know their likely medical future. See Aubrey Milunsky, The “New” Genetics: From Research to Reality, 27 Suffolk U. L. Rev. 1307, 1312 (1993).

20 The definition of a “genetic test” in the Massachusetts law goes on to exclude “tests given for the exclusive purpose of determining the abuse of drugs or alcohol.” Mass. Gen. Law ch. 151B, § 1. I have not been able to identify any tests used to detect drug or alcohol use that could otherwise be construed as “genetic tests.” Therefore, this language seems superfluous. While some tests for prior drug use can be done on hair samples, which may coincidently contain DNA (depending upon how much of the hair follicle has been collected) the mere coincidental presence of DNA in a specimen would certainly not make every examination of that specimen a genetic test. Deborah Pergament, //'s Not Just Hair: Historical and Cultural Considerations for an Emerging Technology, 75 Chi.-Kent L. Rev 41, 59 n.4 (1999).

21 See, e.g., N.J. Stat. Ann. § 10:5-5(oo) (West 2001) (defining genetic information as “information about genes, gene products or genetic characteristics that may derive from an individual or family member”); N.C. Gen. Stat. § 95-28.lA(b) (2001) (defining genetic information as “information about genes, gene products, or inherited characteristics that may derive from an individual or a family member”); S.D. Codified Laws § 60-2-21 (Michie 2001) (defining genetic information as “information about genes, gene products, and inherited characteristics that may derive from the individual or family member. This includes information derived from laboratory tests that identify mutations in specific genes or chromosomes, physical medical examinations, family histories, and direct analysis of genes or chromosomes.”).

22 See, e.g., Okla. Stat. Ann. tit. 36, § 3614.1 (West 2001) ('"Genetic information' means information derived from the results of a genetic test. Genetic information shall not include family history, the results of a routine physical examination or test, the results of a chemical, blood or urine analysis, the results of a test to determine drug use, the results of a test for the presence of the human immunodeficiency virus, or the results of any other test commonly accepted in clinical practice at the time it is ordered by the insurer.”); Tenn. Code Ann. § 56-7-2702(3) (2001) (“'Genetic information' means information derived from genetic testing to determine the presence or absence of variations or mutations, including carrier status, in an individual's genetic material or genes that are scientifically or medically believed to cause a disease, disorder or syndrome, or are associated with a statistically increased risk of developing a disease, disorder or syndrome, which is or urine analysis unless conducted purposefully to obtain genetic information or questions regarding family history. Such testing does not include either routine physical examinations or chemical, blood or urine analysis unless conducted purposefully to obtain genetic information or questions regarding family history.”).

23 Mass. Gen. Laws ch. 151B, § 4(1).

24 Id. § 4.

25 Id.

26 Id. § 3.

27 804 C.M.R. § 3.01(3)(a) (2002). Although the Commission decides whether the BFOQ exception applies on a case by case basis, examples provided as guidance shed some light on what the Commission sees as “narrow.” For example, gender may be a BFOQ, therefore, when the employee is an actor hired to play a male or female role, or when customer privacy is a concern and the employee is an attendant in a single sex washroom or locker room. See 804 C.M.R. § 3.01(3)(b)(3) (2002).

28 See Mass. Gen. Laws ch. 151B, § 22 (protecting information pertaining to the “presence, absence, variation, alteration, or modification of a human gene or genes”).

29 To date, MCAD has not issued any rules or regulations regarding the amendments to the sections of the Massachusetts statutes governing unlawful labor practices that address genetic discrimination, although it has authority to do so under Mass. Gen. Laws ch. 151B, § 3. It also has not issued any guidance on the new sections of the statute. For MCAD's employment guidelines, see 804 C.M.R. § 3.01.

30 U.S. Cong., Office of Tech. Assessment, OTA-BA-455, Genetic Monitoring and Screening in the Workplace 22-23 (1990).

31 See Am. Mgmt. Ass'n, 2001 AMA Survey on Workplace Testing: Medical Testing Summary of Findings, available at http://www.amanet.org/research (reflecting information compiled between Jan. and Mar. 2001) (last visited May 11, 2002). Of 1,627 employers who completed the 2001 survey, only two (less than one percent) admitted to performing genetic testing. In prior years many respondents apparently had difficulty answering questions because of a lack of understanding as to what was or was not a genetic test. The 2001 survey defined genetic testing as “[t]he analysis of human DNA, RNA, chromosomes, proteins, and certain metabolites in order to detect heritable disease related genotypes, mutations, phenotypes, or karyotypes for clinical purposes. Such purposes include predicting risk of disease, identifying carriers, and establishing prenatal and clinical diagnosis or prognosis."

32 Burlington Santa Fe Ry., BNSF Company Profile, at http://www.bnsf.com/media/html/ company_profile.html (last visited May 17, 2002).

33 Matt Curry, Railroad Gene Test Baffles Ethicists, N.Y. Times on the Web, Feb. 18, 2001, available at http://www.bnsfcorp.com/Discussionl9/_discl9/00000894.htm.

34 Carol Smith, Genetic Test Goes From Lab to Courts, Seattle Post-Intelligencer, Mar. 26, 2001, at Al.

35 EEOC v. Burlington N. Santa Fe Ry., Civ. No. 01-4013 MWB (N.D. Iowa April 18, 2001) (order granting preliminary settlement agreement); see E.E.O.C Press Release, supra note 8.

36 Dr. Phillip Chance, the creator of the test which detects a deletion on chromosome 17, was disturbed by news reports of the Railway's use of the exam as it was originally designed to identify predispositions to Hereditary Neuropathy with Liability to Pressure Palsies (HNPP), which occurs in about one out of 10,000 people and is rarely a cause of carpal tunnel syndrome. See Smith, supra note 32.

37 Interview of BSNF employee Dave Escher. 60 Minutes II (CBS News television broadcast, Apr. 10, 2001) (transcript on file with Burrelle's Information Services) [hereinafter60 Minutes II].

38 T. ShawnTay\or, Job Gene Tests Raise Alarm, Chicago Tribune, Sept. 3, 2001, at 1.

39 Id.

40 Press Release, Bhd. Of Maint. of Way Employees & Bhd. of Locomotive Eng'rs, Genetic Testing Derailed at BNSF (Apr. 10, 2001), at http://www.bmwe.org/nw/2001/04apr/23.htm [hereinafter BMWE/BLE Press Release]. It is not clear which Iowa statute was the basis of the union's claim. However, in 1992, Iowa passed a law prohibiting employers from requiring or administering a genetic test as a condition of employment. See Iowa Code Ann. § 729.6 (West 2001).

41 E.E.O.C Press Release, supra note 8.

42 Id.

43 E.E.O.C. v. Burlington N. Santa Fe Ry., Civ. No. 01-4013 MWB (N.D. Iowa Apr. 18, 2001) (order granting preliminary settlement agreement).

44 Id.

45 BMWE/BLE Press Release, supra note 40.

46 One possibility in this regard is an action against the laboratory in Massachusetts that performed the actual analysis. If the testing was done after the Massachusetts genetic testing law went into effect and the lab processed the samples without confirming if the physician who collected the samples had the consent of the individuals who were tested, the lab may have violated provisions of the Massachusetts law governing laboratories. See infra note 61 and accompanying text.

47 Burlington Northern Santa Fe Railway does not operate in the northeast. BNSF Company Profile, supra note 32.

48 Mass. Gen. Laws ch. 151B, § 4 (2001).

49 Mass. Gen. Laws ch. ill , § 70G(a)(5).

50 Mass. Gen. Laws ch. 151B, § 4(1) (emphasis added).

51 804 C.M.R. § 3.01(3)(a) (2001).

52 Mass. Gen. Laws ch. 151B, § 3(1)-(13) & §5.

53 804 C.M.R § 1.18.

54 Mass. Gen. Laws ch. 151B, § 6; 804 C.M.R. § 1.18(3).

55 Mass. Gen. Laws ch. 30A, § 14; Mass. Gen. Laws ch. 151B, §6; 804 C.M.R. § 1.18(4).

56 This is not unusual under the Massachusetts statute governing unfair labor practices. While the law provides for specific kinds of damages in regard to certain unfair practices (i.e., sexual harassment), it does not explicitly address damages in regard to genetic discrimination as an unfair practice. Presumably MCAD can use its general powers under Mass. Gen. Laws. ch. 151B, § 3, to assign appropriate damages as part of its own judgments and to seek affirmation and enforcement of those damages in court.

57 Mass. Gen. Laws ch. 111, § 70G(b).

58 Id. § 70G(a).

59 Eric Convey, Tests May Have Violated Law, Boston Herald, July 6, 2001, at 32.

60 See 60 Minutes II, supra note 37.

61 Mass. Gen. Laws ch. 111, § 70G(d).

62 Mass. Gen. Laws ch. 93A, § 9(3).

63 Id. § 9(3A).

64 See George J. Annas, The Limits of State Laws to Protect Genetic Information, 345 New Eng. J. Med. 385, 386 (2001).

65 Mass. Gen. Laws ch. 111, § 70G(d).

66 See Paul A. Shulte et al., Ethical Issues in the Use of Genetic Markers in Occupational Epidemiologic Research, 41 J. Occupational & Envtl. Med. 639 (1999).

67 Id. at 639.

68 Yesley, Michael S., Protecting Genetic Difference, 13 Berkeley Tech. L.J. 653, 663 (1998)Google Scholar.

69 Id.

70 Id.

71 Neb. Rev. Stat. Ann. § 48-236(3) (Michie 2001).

72 Neb. Comm'n on Human Genetic Techs., Report of the Nebraska Commission on Human Genetic Technologies (1998), available at http://www.hhs.state.ne.us/ced/genrep.htm.

73 Id.

74 For equally unapparent reasons, the legislature broadened the exception and removed the employer's burden of demonstrating a compelling need. Consequently, the only justification that employers need access to genetic information is that they will use it to protect employee health or safety. See Neb. Rev. Stat. Ann. § 48-236(3).

75 See Lillian Trettin et al., Genetic Monitoring in the Workplace: A Tool Not a Solution, 10 Risk 31, 33 (1999). See also Michael Baram, Genetic Testing for Susceptibility to Disease from Exposure to Toxic Chemicals: Implications for Public and Worker Health Policies, 41 Jurimetrics J. 165 (2001).

76 Shulte et al., supra note 66, at 639.

77 Genetic Monitoring and Screening in the Workplace, supra note 3 0, at 71.

78 Mass. Gen. Laws ch. 111, § 70G(a).

79 S. 318 § 202(a). See 29 U.S.C. § 655(a) (1994) (stating that the Secretary of Labor has authority to promulgate OSHA standards); 30 U.S.C. § 811(a) (1994) (stating that the Secretary of Labor has authority to promulgate health and safety standards under the Mine Safety Act).

80 S. 318 § 201(3).

81 Id. § 207(c).

82 See Patricia A. Roche & George J. Annas, Protecting Genetic Privacy, 2 Nature Rev. Genetics 392 (2001); Annas, supra note 64 at 385-88.