Genetic discrimination, genetic privacy: Rethinking employee protections for a brave new workplace

Northwestern University Law Review

Volumn 96, Issue 4, 2002, Pages 1497-1550

  Kim, Pauline T ^a,b,c  

^a WASHINGTON UNIVERSITY SCHOOL OF LAW   (United States)

^b HARVARD UNIVERSITY   (United States)

^c HARVARD LAW SCHOOL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

AMERICANS WITH DISABILITIES ACT 1990; ARTICLE; EMPLOYMENT; GENETIC PRIVACY; GENETIC SCREENING; GENETICS AND REPRODUCTION; HUMAN; LEGAL APPROACH; LEGAL ASPECT; PERSONAL AUTONOMY; SOCIAL PSYCHOLOGY; UNITED STATES; WORKPLACE;

AMERICANS WITH DISABILITIES ACT 1990; GENETICS AND REPRODUCTION; LEGAL APPROACH;

EMPLOYMENT; GENETIC PRIVACY; GENETIC SCREENING; HUMANS; PERSONAL AUTONOMY; PREJUDICE; UNITED STATES; WORKPLACE;

EID: 2342458358     PISSN: 00293571     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (253)

1. Nat'l Human Genome Research Inst., Remarks by the President et al. on the Completion of the First Survey of the Entire Human Genome Project, at http://www.nhgri.nih.gov/NEWS/sequencing_ consortium2.html (June 26, 2000).
2. Id.
3. Id.
4. Nat'l Human Genome Research Inst., Dr. Francis Collins, Director of NHGRI, Applauds President Clinton's Action to Protect Federal Workers from Genetic Discrimination, at http://www.nhgri.nih. gov/NEWS/Executive_Order/Collins.html (Feb. 8, 2000).
5. Craig Venter & Daniel Cohen, Out of the Frying Pan or into the Fire?, L.A. TIMES, June 26, 2000, at B10.
6. Tamar Lewin, Commission Sues Railroad to End Genetic Testing in Work Injury Cases, N.Y. TIMES, Feb. 10, 2001, at A7.
7. Railroad to Stop Genetic Testing, WASH. POST, Feb. 13, 2001, at E2; Jerry Ackerman, A Test for Genetic Privacy Concerns Voiced over Firms' Ability to Access, Abuse Employees' Data, BOSTON GLOBE, Feb. 25, 2001, at J1; Lisa Girion, Nurse Derails Genetic Testing, L.A. TIMES, Feb. 25, 2001, at W1. The EEOC eventually reached a settlement with Burlington Northern in which it agreed to pay $2.2 million to the thirty-six workers who had been subjected to the genetic tests. See Lisa Girion, Railroad Settles Suit over Genetic Testing in Workplace, L.A. TIMES, May 9, 2002, at C3; T. Shawn Taylor, Railroad Settles Genetic-Test Suit, CHI. TRIB., May 9, 2002, at A3.
8. Railroad to Stop Genetic Testing, WASH. POST, Feb. 13, 2001, at E2; Jerry Ackerman, A Test for Genetic Privacy Concerns Voiced over Firms' Ability to Access, Abuse Employees' Data, BOSTON GLOBE, Feb. 25, 2001, at J1; Lisa Girion, Nurse Derails Genetic Testing, L.A. TIMES, Feb. 25, 2001, at W1. The EEOC eventually reached a settlement with Burlington Northern in which it agreed to pay $2.2 million to the thirty-six workers who had been subjected to the genetic tests. See Lisa Girion, Railroad Settles Suit over Genetic Testing in Workplace, L.A. TIMES, May 9, 2002, at C3; T. Shawn Taylor, Railroad Settles Genetic-Test Suit, CHI. TRIB., May 9, 2002, at A3.
9. Railroad to Stop Genetic Testing, WASH. POST, Feb. 13, 2001, at E2; Jerry Ackerman, A Test for Genetic Privacy Concerns Voiced over Firms' Ability to Access, Abuse Employees' Data, BOSTON GLOBE, Feb. 25, 2001, at J1; Lisa Girion, Nurse Derails Genetic Testing, L.A. TIMES, Feb. 25, 2001, at W1. The EEOC eventually reached a settlement with Burlington Northern in which it agreed to pay $2.2 million to the thirty-six workers who had been subjected to the genetic tests. See Lisa Girion, Railroad Settles Suit over Genetic Testing in Workplace, L.A. TIMES, May 9, 2002, at C3; T. Shawn Taylor, Railroad Settles Genetic-Test Suit, CHI. TRIB., May 9, 2002, at A3.
10. Railroad to Stop Genetic Testing, WASH. POST, Feb. 13, 2001, at E2; Jerry Ackerman, A Test for Genetic Privacy Concerns Voiced over Firms' Ability to Access, Abuse Employees' Data, BOSTON GLOBE, Feb. 25, 2001, at J1; Lisa Girion, Nurse Derails Genetic Testing, L.A. TIMES, Feb. 25, 2001, at W1. The EEOC eventually reached a settlement with Burlington Northern in which it agreed to pay $2.2 million to the thirty-six workers who had been subjected to the genetic tests. See Lisa Girion, Railroad Settles Suit over Genetic Testing in Workplace, L.A. TIMES, May 9, 2002, at C3; T. Shawn Taylor, Railroad Settles Genetic-Test Suit, CHI. TRIB., May 9, 2002, at A3.
11. Railroad to Stop Genetic Testing, WASH. POST, Feb. 13, 2001, at E2; Jerry Ackerman, A Test for Genetic Privacy Concerns Voiced over Firms' Ability to Access, Abuse Employees' Data, BOSTON GLOBE, Feb. 25, 2001, at J1; Lisa Girion, Nurse Derails Genetic Testing, L.A. TIMES, Feb. 25, 2001, at W1. The EEOC eventually reached a settlement with Burlington Northern in which it agreed to pay $2.2 million to the thirty-six workers who had been subjected to the genetic tests. See Lisa Girion, Railroad Settles Suit over Genetic Testing in Workplace, L.A. TIMES, May 9, 2002, at C3; T. Shawn Taylor, Railroad Settles Genetic-Test Suit, CHI. TRIB., May 9, 2002, at A3.
12. 42 U.S.C. §§ 12101-12213 (1994).
13. See, e.g., Larry Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109, 143 (1991); Deborah Kaplan, The Definition of Disability: Perspective of the Disability Community, 3 J. HEALTH CARE L. & POL'Y 352, 362-63 (2000); Melinda B. Kaufmann, Genetic Discrimination in the Workplace: An Overview of Existing Protections, 30 LOY. U. CHI. L.J. 393 (1999); Eugenia Liu, Bragdon v. Abbott: Extending the Americans with Disabilities Act to Asymptomatic Individuals, 3 J. HEALTH CARE L. & POL'Y 382 (2000).
14. See, e.g., Larry Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109, 143 (1991); Deborah Kaplan, The Definition of Disability: Perspective of the Disability Community, 3 J. HEALTH CARE L. & POL'Y 352, 362-63 (2000); Melinda B. Kaufmann, Genetic Discrimination in the Workplace: An Overview of Existing Protections, 30 LOY. U. CHI. L.J. 393 (1999); Eugenia Liu, Bragdon v. Abbott: Extending the Americans with Disabilities Act to Asymptomatic Individuals, 3 J. HEALTH CARE L. & POL'Y 382 (2000).
15. See, e.g., Larry Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109, 143 (1991); Deborah Kaplan, The Definition of Disability: Perspective of the Disability Community, 3 J. HEALTH CARE L. & POL'Y 352, 362-63 (2000); Melinda B. Kaufmann, Genetic Discrimination in the Workplace: An Overview of Existing Protections, 30 LOY. U. CHI. L.J. 393 (1999); Eugenia Liu, Bragdon v. Abbott: Extending the Americans with Disabilities Act to Asymptomatic Individuals, 3 J. HEALTH CARE L. & POL'Y 382 (2000).
16. See, e.g., Larry Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109, 143 (1991); Deborah Kaplan, The Definition of Disability: Perspective of the Disability Community, 3 J. HEALTH CARE L. & POL'Y 352, 362-63 (2000); Melinda B. Kaufmann, Genetic Discrimination in the Workplace: An Overview of Existing Protections, 30 LOY. U. CHI. L.J. 393 (1999); Eugenia Liu, Bragdon v. Abbott: Extending the Americans with Disabilities Act to Asymptomatic Individuals, 3 J. HEALTH CARE L. & POL'Y 382 (2000).
17. See, e.g., Paul Steven Miller, Is There a Pink Slip in My Genes? Genetic Discrimination in the Workplace, 3 J. HEALTH CARE L. & POL'Y 225 (2000); Tara L. Rachinsky, Genetic Testing: Toward a Comprehensive Policy to Prevent Genetic Discrimination in the Workplace, 2 U. PA. J. LAB. & EMP. L. 575 (2000).
18. See, e.g., Paul Steven Miller, Is There a Pink Slip in My Genes? Genetic Discrimination in the Workplace, 3 J. HEALTH CARE L. & POL'Y 225 (2000); Tara L. Rachinsky, Genetic Testing: Toward a Comprehensive Policy to Prevent Genetic Discrimination in the Workplace, 2 U. PA. J. LAB. & EMP. L. 575 (2000).
19. More than twenty states have enacted laws to prohibit genetic discrimination in employment. These statutes vary considerably in the extent of their coverage and the level of protection they offer workers. A few have simply added genetic characteristics to the list of protected categories in their employment discrimination statutes. See, e.g., ARIZ. REV. STAT. § 41-1463(B)(4) (1998). Some also forbid employers from requiring or requesting genetic tests of applicants or employees, but do not otherwise restrict employer access to genetic information. See, e.g., NEV. REV. STAT. § 613.345(1) (1999). Others have enacted more comprehensive limits on employer collection, use, and disclosure of genetic information. See, e.g., LA. REV. STAT. ANN. § 368 (West 2002). For a more detailed analysis of state legislation regulating employer use of genetic information, see Sonia M. Suter, The Allure and Peril of Genetics Exceptionalism: Do We Need Special Genetics Legislation?, 79 WASH. U. L.Q. 669, 691-96 (2001).
20. Exec. Order No. 13,145, 3 C.F.R. § 235 (2000).
21. Genetic Nondiscrimination in Health Insurance and Employment Act, S. 318, 107th Cong. (2001); H.R. 602, 107th Cong. (2001).
22. Examining Issues Relating to the Development of Federal Policy Governing the Treatment of Individual's Genetic Information in the Workplace in Light of the Recent Human Genome Breakthroughs: Hearing Before the Senate Comm. on Health, Education, Labor, and Pensions, 106th Cong. 18 (2000) (statement of Sen. Kennedy).
23. Miller, supra note 10, at 264.
24. See, e.g., Council for Responsible Genetics, Genetic Discrimination, A Position Paper Presented by the Council for Responsible Genetics, at http://www.gene-watch.org/prograrns/geneticdisc/gd_pp.html (last visited June 30, 2002); Hearing Before the Senate Comm. on Health, Education, Labor and Pensions, 106th Cong. 77 (2000) (testimony of Susannah Baruch, National Partnership for Women & Families), available at http://www.nationalpartnership.org/content.cfm?L1=202&DBT=Documents&News ItemID=181 (last visited June 30, 2002).
25. See, e.g., Council for Responsible Genetics, Genetic Discrimination, A Position Paper Presented by the Council for Responsible Genetics, at http://www.gene-watch.org/prograrns/geneticdisc/gd_pp.html (last visited June 30, 2002); Hearing Before the Senate Comm. on Health, Education, Labor and Pensions, 106th Cong. 77 (2000) (testimony of Susannah Baruch, National Partnership for Women & Families), available at http://www.nationalpartnership.org/content.cfm?L1=202&DBT=Documents&News ItemID=181 (last visited June 30, 2002).
26. See, e.g., McDonnell Douglas Corp. v. Green, 411 U.S. 792 (1973); Tex. Dept. of Cmty. Affairs v. Burdine, 450 U.S. 248 (1981); Price Waterhouse v. Hopkins, 490 U.S. 228 (1989); St. Mary's Honor Ctr. v. Hicks, 509 U.S. 502 (1993); Reeves v. Sanderson Plumbing Prod., 530 U.S. 133 (2000).
27. See, e.g., Mark S. Brodin, The Demise of Circumstantial Proof in Employment Discrimination Litigation: St. Mary's Honor Center v. Hicks, Pretext, and the "Personality" Excuse, 18 BERKELEY J. EMP. & LAB. L. 183 (1997); Catherine J. Lanctot, Secrets and Lies: The Need for a Definitive Rule of Law in Pretext Cases, 61 LA. L. REV. 539, 553 (2001); Deborah C. Malamud, The Last Minuet: Disparate Treatment After Hicks, 93 MICH. L. REV. 2229 (1995); Ann C. McGinley, !Viva La Evolucion!: Recognizing Unconscious Motive in Title VII, 9 CORNELL J.L. & PUB. POL'Y 415 (2000); Michael Selmi, Proving Intentional Discrimination: The Reality of Supreme Court Rhetoric, 86 GEO. L.J. 279 (1997); Leland Ware, Inferring Intent from Proof of Pretext: Resolving the Summary Judgment Confusion in Employment Discrimination Cases Alleging Disparate Treatment, 4 EMPLOYEE RTS. & EMP. POL'Y J. 37, 74 (2000); Michael J. Zimmer, Slicing and Dicing of Individual Disparate Treatment Law, 61 LA. L. REV. 577 (2001).
28. See, e.g., Mark S. Brodin, The Demise of Circumstantial Proof in Employment Discrimination Litigation: St. Mary's Honor Center v. Hicks, Pretext, and the "Personality" Excuse, 18 BERKELEY J. EMP. & LAB. L. 183 (1997); Catherine J. Lanctot, Secrets and Lies: The Need for a Definitive Rule of Law in Pretext Cases, 61 LA. L. REV. 539, 553 (2001); Deborah C. Malamud, The Last Minuet: Disparate Treatment After Hicks, 93 MICH. L. REV. 2229 (1995); Ann C. McGinley, !Viva La Evolucion!: Recognizing Unconscious Motive in Title VII, 9 CORNELL J.L. & PUB. POL'Y 415 (2000); Michael Selmi, Proving Intentional Discrimination: The Reality of Supreme Court Rhetoric, 86 GEO. L.J. 279 (1997); Leland Ware, Inferring Intent from Proof of Pretext: Resolving the Summary Judgment Confusion in Employment Discrimination Cases Alleging Disparate Treatment, 4 EMPLOYEE RTS. & EMP. POL'Y J. 37, 74 (2000); Michael J. Zimmer, Slicing and Dicing of Individual Disparate Treatment Law, 61 LA. L. REV. 577 (2001).
29. See, e.g., Mark S. Brodin, The Demise of Circumstantial Proof in Employment Discrimination Litigation: St. Mary's Honor Center v. Hicks, Pretext, and the "Personality" Excuse, 18 BERKELEY J. EMP. & LAB. L. 183 (1997); Catherine J. Lanctot, Secrets and Lies: The Need for a Definitive Rule of Law in Pretext Cases, 61 LA. L. REV. 539, 553 (2001); Deborah C. Malamud, The Last Minuet: Disparate Treatment After Hicks, 93 MICH. L. REV. 2229 (1995); Ann C. McGinley, !Viva La Evolucion!: Recognizing Unconscious Motive in Title VII, 9 CORNELL J.L. & PUB. POL'Y 415 (2000); Michael Selmi, Proving Intentional Discrimination: The Reality of Supreme Court Rhetoric, 86 GEO. L.J. 279 (1997); Leland Ware, Inferring Intent from Proof of Pretext: Resolving the Summary Judgment Confusion in Employment Discrimination Cases Alleging Disparate Treatment, 4 EMPLOYEE RTS. & EMP. POL'Y J. 37, 74 (2000); Michael J. Zimmer, Slicing and Dicing of Individual Disparate Treatment Law, 61 LA. L. REV. 577 (2001).
30. See, e.g., Mark S. Brodin, The Demise of Circumstantial Proof in Employment Discrimination Litigation: St. Mary's Honor Center v. Hicks, Pretext, and the "Personality" Excuse, 18 BERKELEY J. EMP. & LAB. L. 183 (1997); Catherine J. Lanctot, Secrets and Lies: The Need for a Definitive Rule of Law in Pretext Cases, 61 LA. L. REV. 539, 553 (2001); Deborah C. Malamud, The Last Minuet: Disparate Treatment After Hicks, 93 MICH. L. REV. 2229 (1995); Ann C. McGinley, !Viva La Evolucion!: Recognizing Unconscious Motive in Title VII, 9 CORNELL J.L. & PUB. POL'Y 415 (2000); Michael Selmi, Proving Intentional Discrimination: The Reality of Supreme Court Rhetoric, 86 GEO. L.J. 279 (1997); Leland Ware, Inferring Intent from Proof of Pretext: Resolving the Summary Judgment Confusion in Employment Discrimination Cases Alleging Disparate Treatment, 4 EMPLOYEE RTS. & EMP. POL'Y J. 37, 74 (2000); Michael J. Zimmer, Slicing and Dicing of Individual Disparate Treatment Law, 61 LA. L. REV. 577 (2001).
31. See, e.g., Mark S. Brodin, The Demise of Circumstantial Proof in Employment Discrimination Litigation: St. Mary's Honor Center v. Hicks, Pretext, and the "Personality" Excuse, 18 BERKELEY J. EMP. & LAB. L. 183 (1997); Catherine J. Lanctot, Secrets and Lies: The Need for a Definitive Rule of Law in Pretext Cases, 61 LA. L. REV. 539, 553 (2001); Deborah C. Malamud, The Last Minuet: Disparate Treatment After Hicks, 93 MICH. L. REV. 2229 (1995); Ann C. McGinley, !Viva La Evolucion!: Recognizing Unconscious Motive in Title VII, 9 CORNELL J.L. & PUB. POL'Y 415 (2000); Michael Selmi, Proving Intentional Discrimination: The Reality of Supreme Court Rhetoric, 86 GEO. L.J. 279 (1997); Leland Ware, Inferring Intent from Proof of Pretext: Resolving the Summary Judgment Confusion in Employment Discrimination Cases Alleging Disparate Treatment, 4 EMPLOYEE RTS. & EMP. POL'Y J. 37, 74 (2000); Michael J. Zimmer, Slicing and Dicing of Individual Disparate Treatment Law, 61 LA. L. REV. 577 (2001).
32. See, e.g., Mark S. Brodin, The Demise of Circumstantial Proof in Employment Discrimination Litigation: St. Mary's Honor Center v. Hicks, Pretext, and the "Personality" Excuse, 18 BERKELEY J. EMP. & LAB. L. 183 (1997); Catherine J. Lanctot, Secrets and Lies: The Need for a Definitive Rule of Law in Pretext Cases, 61 LA. L. REV. 539, 553 (2001); Deborah C. Malamud, The Last Minuet: Disparate Treatment After Hicks, 93 MICH. L. REV. 2229 (1995); Ann C. McGinley, !Viva La Evolucion!: Recognizing Unconscious Motive in Title VII, 9 CORNELL J.L. & PUB. POL'Y 415 (2000); Michael Selmi, Proving Intentional Discrimination: The Reality of Supreme Court Rhetoric, 86 GEO. L.J. 279 (1997); Leland Ware, Inferring Intent from Proof of Pretext: Resolving the Summary Judgment Confusion in Employment Discrimination Cases Alleging Disparate Treatment, 4 EMPLOYEE RTS. & EMP. POL'Y J. 37, 74 (2000); Michael J. Zimmer, Slicing and Dicing of Individual Disparate Treatment Law, 61 LA. L. REV. 577 (2001).
33. See, e.g., Mark S. Brodin, The Demise of Circumstantial Proof in Employment Discrimination Litigation: St. Mary's Honor Center v. Hicks, Pretext, and the "Personality" Excuse, 18 BERKELEY J. EMP. & LAB. L. 183 (1997); Catherine J. Lanctot, Secrets and Lies: The Need for a Definitive Rule of Law in Pretext Cases, 61 LA. L. REV. 539, 553 (2001); Deborah C. Malamud, The Last Minuet: Disparate Treatment After Hicks, 93 MICH. L. REV. 2229 (1995); Ann C. McGinley, !Viva La Evolucion!: Recognizing Unconscious Motive in Title VII, 9 CORNELL J.L. & PUB. POL'Y 415 (2000); Michael Selmi, Proving Intentional Discrimination: The Reality of Supreme Court Rhetoric, 86 GEO. L.J. 279 (1997); Leland Ware, Inferring Intent from Proof of Pretext: Resolving the Summary Judgment Confusion in Employment Discrimination Cases Alleging Disparate Treatment, 4 EMPLOYEE RTS. & EMP. POL'Y J. 37, 74 (2000); Michael J. Zimmer, Slicing and Dicing of Individual Disparate Treatment Law, 61 LA. L. REV. 577 (2001).
34. See, e.g., George J. Annas, Genetic Privacy: There Ought to Be a Law, 4 TEX. REV. L. & POL. 9 (1999); George J. Annas et al., Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations 23 J.L. MED. & ETHICS 360 (1995); Ronald M. Green & A. Mathew Thomas, DNA: Five Distinguishing Features for Policy Analysis, 11 HARV. J.L. & TECH. 571 (1998); George Poste, Privacy and Confidentiality in the Age of Genetic Engineering, 4 TEX. REV. L. & POL. 25 (1999); John A. Robertson, Privacy Issues in Second Stage Genomes, 40 JURIMETRICS 59 (1999).
35. See, e.g., George J. Annas, Genetic Privacy: There Ought to Be a Law, 4 TEX. REV. L. & POL. 9 (1999); George J. Annas et al., Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations 23 J.L. MED. & ETHICS 360 (1995); Ronald M. Green & A. Mathew Thomas, DNA: Five Distinguishing Features for Policy Analysis, 11 HARV. J.L. & TECH. 571 (1998); George Poste, Privacy and Confidentiality in the Age of Genetic Engineering, 4 TEX. REV. L. & POL. 25 (1999); John A. Robertson, Privacy Issues in Second Stage Genomes, 40 JURIMETRICS 59 (1999).
36. See, e.g., George J. Annas, Genetic Privacy: There Ought to Be a Law, 4 TEX. REV. L. & POL. 9 (1999); George J. Annas et al., Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations 23 J.L. MED. & ETHICS 360 (1995); Ronald M. Green & A. Mathew Thomas, DNA: Five Distinguishing Features for Policy Analysis, 11 HARV. J.L. & TECH. 571 (1998); George Poste, Privacy and Confidentiality in the Age of Genetic Engineering, 4 TEX. REV. L. & POL. 25 (1999); John A. Robertson, Privacy Issues in Second Stage Genomes, 40 JURIMETRICS 59 (1999).
37. See, e.g., George J. Annas, Genetic Privacy: There Ought to Be a Law, 4 TEX. REV. L. & POL. 9 (1999); George J. Annas et al., Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations 23 J.L. MED. & ETHICS 360 (1995); Ronald M. Green & A. Mathew Thomas, DNA: Five Distinguishing Features for Policy Analysis, 11 HARV. J.L. & TECH. 571 (1998); George Poste, Privacy and Confidentiality in the Age of Genetic Engineering, 4 TEX. REV. L. & POL. 25 (1999); John A. Robertson, Privacy Issues in Second Stage Genomes, 40 JURIMETRICS 59 (1999).
38. See, e.g., George J. Annas, Genetic Privacy: There Ought to Be a Law, 4 TEX. REV. L. & POL. 9 (1999); George J. Annas et al., Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations 23 J.L. MED. & ETHICS 360 (1995); Ronald M. Green & A. Mathew Thomas, DNA: Five Distinguishing Features for Policy Analysis, 11 HARV. J.L. & TECH. 571 (1998); George Poste, Privacy and Confidentiality in the Age of Genetic Engineering, 4 TEX. REV. L. & POL. 25 (1999); John A. Robertson, Privacy Issues in Second Stage Genomes, 40 JURIMETRICS 59 (1999).
39. In 1999, 65.8% of nonelderly Americans had employment-based health insurance coverage, while 6.6% purchased coverage individually. Paul Fronstin, Sources of Health Insurance and Characteristics of the Uninsured: Analysis of the March 2000 Current Population Survey, EBRI Issue Brief 228, at 4 tbl. 1 (Dec. 2000).
40. Somewhat less than three-quarters of nonelderly American workers receive health insurance benefits from their employers. Id. at 6 chart 4.
41. The proportion of nonelderly Americans who purchased their own health insurance has varied between 6-7% over the past decade. Id. at 4 tbl. 1.
42. Nicholas Wade, Reports on Human Genome Challenge Long-Held Beliefs, N.Y. TIMES, Feb. 12, 2001, at A1.
43. See Access Excellence Res. Ctr., Understanding Gene Testing: How Are Genes Linked to Disease?, at http://www.accessexcellence.org/AE/AEPC/NIH/gene05.html (last visited June 30, 2002).
44. See Understanding Gene Testing: What Are the Uses of Genetic Testing?, at http://www.accessexcellence.org/AE/AEPC/NIH/gene10.html (last visited June 30, 2002). A survey conducted by the Task Force on Genetic Testing which was created by the National Institute of Health, Department of Energy Working Group on Ethical, Legal, and Social Implications of Human Genome Research, found that several hundred biotechnology companies and nonprofit organizations are currently developing or offering genetic tests for some forty-four leases. Promoting Safe and Effective Genetic Testing in the United States, Final Report of the Task Force on Genetic Testing (Neil A. Holtzman &: Michael S. Watson, eds.), at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix3.html (last visited June 30, 2002) [hereinafter Final Report]. The Task Force defined "genetic test" 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, establishing prenatal and clinical diagnosis or prognosis." Id. at http://www.nhgri.nih.gov/ELSI/TFGT_final/#EXECUTIVE.
45. See Understanding Gene Testing: What Are the Uses of Genetic Testing?, at http://www.accessexcellence.org/AE/AEPC/NIH/gene10.html (last visited June 30, 2002). A survey conducted by the Task Force on Genetic Testing which was created by the National Institute of Health, Department of Energy Working Group on Ethical, Legal, and Social Implications of Human Genome Research, found that several hundred biotechnology companies and nonprofit organizations are currently developing or offering genetic tests for some forty-four leases. Promoting Safe and Effective Genetic Testing in the United States, Final Report of the Task Force on Genetic Testing (Neil A. Holtzman &: Michael S. Watson, eds.), at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix3.html (last visited June 30, 2002) [hereinafter Final Report]. The Task Force defined "genetic test" 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, establishing prenatal and clinical diagnosis or prognosis." Id. at http://www.nhgri.nih.gov/ELSI/TFGT_final/#EXECUTIVE.
46. Andrew Pollack, Buoyed by Mergers, Medical Labs Await Era of Gene Testing, N.Y. TIMES, June 14, 2001, at C1; see also Richard R. Sharp, The Evolution of Predictive Genetic Testing: Deciphering Gene-Environment Interactions, 41 JURIMETRICS 145, 156-58 (2001).
47. Andrew Pollack, Buoyed by Mergers, Medical Labs Await Era of Gene Testing, N.Y. TIMES, June 14, 2001, at C1; see also Richard R. Sharp, The Evolution of Predictive Genetic Testing: Deciphering Gene-Environment Interactions, 41 JURIMETRICS 145, 156-58 (2001).
48. Predictive genetic tests for some two dozen diseases are currently available in research programs. Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER1.
49. See, e.g., Final Report, supra note 25.
50. See id. at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER2.
51. Id.
52. See A.H.M. Mahbubul Huq & Michael R. Hayden, Huntington's Disease, at http://www.gene clinics.org/profiles/huntington (last visited June 30, 2002).
53. Understanding Gene Testing, How Does Heredity Influence Disease?, at http://www.accessexcellence.org/AE/AEPC/NIH/gene08.html (last visited June 30, 2002); see also Suzanne P. Tomlinson, Genetic Testing for Cystic Fibrosis: A Personal Perspective, 11 HARV. J.L. & TECH. 551, 555 (1993).
54. Understanding Gene Testing, How Does Heredity Influence Disease?, at http://www.accessexcellence.org/AE/AEPC/NIH/gene08.html (last visited June 30, 2002); see also Suzanne P. Tomlinson, Genetic Testing for Cystic Fibrosis: A Personal Perspective, 11 HARV. J.L. & TECH. 551, 555 (1993).
55. David J. Weatherall, Single Gene Disorders or Complex Traits: Lessons from the Thalassaemias and Other Monogenic Diseases, 321 BRIT. MED. J. 1117, 1118 (2000).
56. Id. at 1118-19.
57. Understanding Gene Testing, supra note 25, at http://www.accessexcellence.org/AE/AEPC/NIH/ gene08.html.
58. Id.
59. See Neil A. Holtzman et al., Predictive Genetic Testing: From Basic Research to Clinical Practice, 278 SCI. 602, 603 (1997).
60. See Final Report supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER2. For example initial claims that bipolar affective disorder and schizophrenia were linked with certain genetic markers turned out to be based on a chance association rather than any causal connection. Id.
61. Id.
62. Id.
63. An incident in which a woman had her ovaries surgically removed after receiving a false positive test result for the BRCA 1 gene highlights the concerns about laboratory quality. See Judy Peres, Genetic Testing Can Save Lives - But Errors Leave Scars, CHI. TRIB., Sept. 26, 1999, at A1; Rick Weiss, Genetic Testing's Human Toll; In Unregulated Field, Errors Can Upend Lives and Mean Unneeded Surgery, WASH. POST, July 21, 1999, at A1.
64. An incident in which a woman had her ovaries surgically removed after receiving a false positive test result for the BRCA 1 gene highlights the concerns about laboratory quality. See Judy Peres, Genetic Testing Can Save Lives - But Errors Leave Scars, CHI. TRIB., Sept. 26, 1999, at A1; Rick Weiss, Genetic Testing's Human Toll; In Unregulated Field, Errors Can Upend Lives and Mean Unneeded Surgery, WASH. POST, July 21, 1999, at A1.
65. Assessing clinical validity requires determining several separate measures: (1) clinical sensitivity - the probability that the test will be positive in people with the disease, (2) clinical specificity - the probability that the test will be negative in people without the disease, (3) positive predictive value - the probability that people with positive test results will get the disease, and (4) negative predictive value - the probability that people with negative results will not get the disease. Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER2. For a more detailed discussion of the concepts of sensitivity and specificity and how they can complicate the interpretation of genetic tests, see Ralph R. Cook, The Importance of Test Validity and Predictive Values to Screening Programs, 41 JURIMETRICS 111 (2000).
66. Assessing clinical validity requires determining several separate measures: (1) clinical sensitivity - the probability that the test will be positive in people with the disease, (2) clinical specificity - the probability that the test will be negative in people without the disease, (3) positive predictive value - the probability that people with positive test results will get the disease, and (4) negative predictive value - the probability that people with negative results will not get the disease. Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER2. For a more detailed discussion of the concepts of sensitivity and specificity and how they can complicate the interpretation of genetic tests, see Ralph R. Cook, The Importance of Test Validity and Predictive Values to Screening Programs, 41 JURIMETRICS 111 (2000).
67. Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER2.
68. Id.
69. Id. (emphasis added). A number of commentators have raised concerns about the current lack of consistent regulation of genetic tests. See, e.g., Lori B. Andrews, A Conceptual Framework for Genetic Policy: Comparing the Medical, Public Health, and Fundamental Rights Models, 79 WASH. U. L.Q. 221, 252-57 (2001); Neil A. Holtzman, FDA and the Regulation of Genetic Tests, 41 JURIMETRICS 53, 54-56 (2000); Michael J. Malinowski, Separating Predictive Genetic Testing from Snake Oil: Regulation, Liabilities, and Lost Opportunities, 41 JURIMETRICS 23 (2000).
70. Id. (emphasis added). A number of commentators have raised concerns about the current lack of consistent regulation of genetic tests. See, e.g., Lori B. Andrews, A Conceptual Framework for Genetic Policy: Comparing the Medical, Public Health, and Fundamental Rights Models, 79 WASH. U. L.Q. 221, 252-57 (2001); Neil A. Holtzman, FDA and the Regulation of Genetic Tests, 41 JURIMETRICS 53, 54-56 (2000); Michael J. Malinowski, Separating Predictive Genetic Testing from Snake Oil: Regulation, Liabilities, and Lost Opportunities, 41 JURIMETRICS 23 (2000).
71. Id. (emphasis added). A number of commentators have raised concerns about the current lack of consistent regulation of genetic tests. See, e.g., Lori B. Andrews, A Conceptual Framework for Genetic Policy: Comparing the Medical, Public Health, and Fundamental Rights Models, 79 WASH. U. L.Q. 221, 252-57 (2001); Neil A. Holtzman, FDA and the Regulation of Genetic Tests, 41 JURIMETRICS 53, 54-56 (2000); Michael J. Malinowski, Separating Predictive Genetic Testing from Snake Oil: Regulation, Liabilities, and Lost Opportunities, 41 JURIMETRICS 23 (2000).
72. See, e.g., Andrew Baum et al., Stress and Genetic Testing for Disease Risk, 16 HEALTH PSYCHOL. 8 (1997); Robert T. Croyle et al., Psychological Responses to BRCA 1 Mutation Testing: Preliminary Findings, 16 HEALTH PSYCHOL. 63, 69 (1997); Maurice Bloch et al., Predictive Testing for Huntington's Disease in Canada: The Experience of Those Receiving an Increased Risk, 42 AM. J. MED. GENETICS 499, 505 (1992). Lori Andrews surveys the literature documenting the impact predictive genetic testing has on self-concept, cultural and social identity, and familial relationships. See Andrews, supra note 45, at 240-48.
73. See, e.g., Andrew Baum et al., Stress and Genetic Testing for Disease Risk, 16 HEALTH PSYCHOL. 8 (1997); Robert T. Croyle et al., Psychological Responses to BRCA 1 Mutation Testing: Preliminary Findings, 16 HEALTH PSYCHOL. 63, 69 (1997); Maurice Bloch et al., Predictive Testing for Huntington's Disease in Canada: The Experience of Those Receiving an Increased Risk, 42 AM. J. MED. GENETICS 499, 505 (1992). Lori Andrews surveys the literature documenting the impact predictive genetic testing has on self-concept, cultural and social identity, and familial relationships. See Andrews, supra note 45, at 240-48.
74. See, e.g., Andrew Baum et al., Stress and Genetic Testing for Disease Risk, 16 HEALTH PSYCHOL. 8 (1997); Robert T. Croyle et al., Psychological Responses to BRCA 1 Mutation Testing: Preliminary Findings, 16 HEALTH PSYCHOL. 63, 69 (1997); Maurice Bloch et al., Predictive Testing for Huntington's Disease in Canada: The Experience of Those Receiving an Increased Risk, 42 AM. J. MED. GENETICS 499, 505 (1992). Lori Andrews surveys the literature documenting the impact predictive genetic testing has on self-concept, cultural and social identity, and familial relationships. See Andrews, supra note 45, at 240-48.
75. See Julie Bars Culver et al., Breast Cancer Genetics - An Overview (2000), at http://www.gene clinics.org/profiles/brca/details.html (last visited June 30, 2002).
76. The National Cancer Institute estimates that about one in ten women in the United States will develop breast cancer by age eighty. Id.
77. See, e.g., Dean H. Hamer et al., A Linkage Between DNA Markers on the X Chromosome and Male Sexual Orientation, 261 SCI. 321 (1993) (claiming evidence of the involvement of an X-linked gene in male homosexuality). But see George Rice et al., Male Homosexuality: Absence of Linkage to Microsatellite Markers at Xq28, 284 SCI. 665 (1999) (disputing the findings of Hamer et al. that the claimed genetic link to male homosexuality exists); Position Paper by the Council for Responsible Genetics, Do Genes Determine Whether We Are Lesbian, Gay, Bisexual, or Straight?, at http://www.gene-watch.org/programs/testing/gay_gene.html (last visited June 30, 2002) (critizing the Hamer study).
78. See, e.g., Dean H. Hamer et al., A Linkage Between DNA Markers on the X Chromosome and Male Sexual Orientation, 261 SCI. 321 (1993) (claiming evidence of the involvement of an X-linked gene in male homosexuality). But see George Rice et al., Male Homosexuality: Absence of Linkage to Microsatellite Markers at Xq28, 284 SCI. 665 (1999) (disputing the findings of Hamer et al. that the claimed genetic link to male homosexuality exists); Position Paper by the Council for Responsible Genetics, Do Genes Determine Whether We Are Lesbian, Gay, Bisexual, or Straight?, at http://www.gene-watch.org/programs/testing/gay_gene.html (last visited June 30, 2002) (critizing the Hamer study).
79. See, e.g., Dean H. Hamer et al., A Linkage Between DNA Markers on the X Chromosome and Male Sexual Orientation, 261 SCI. 321 (1993) (claiming evidence of the involvement of an X-linked gene in male homosexuality). But see George Rice et al., Male Homosexuality: Absence of Linkage to Microsatellite Markers at Xq28, 284 SCI. 665 (1999) (disputing the findings of Hamer et al. that the claimed genetic link to male homosexuality exists); Position Paper by the Council for Responsible Genetics, Do Genes Determine Whether We Are Lesbian, Gay, Bisexual, or Straight?, at http://www.gene-watch.org/programs/testing/gay_gene.html (last visited June 30, 2002) (critizing the Hamer study).
80. Nelkin and Lindee discuss the ways in which the notion that certain genes determine human behavior have been popularized by the media, even in the absence of any conclusive scientific evidence that such genes exist. DOROTHY NELKIN & M. SUSAN LINDEE, THE DNA MYSTIQUE: THE GENE AS A CULTURAL ICON 80-94 (1995).
81. See Genetic Discrimination, A Position Paper Presented by the Council for Responsible Genetics, at http://www.gene-watch.org/programs/geneticdisc/gd_pp.html (Jan. 2001).
82. Genetic Information in the Workplace: Hearing Before the Senate Comm. on Health, Educ., Labor, and Pensions, 106th Cong. 7 (2000) (statement of Francis S. Collins, Director, National Human Genome Research Institute).
83. Genetic Information in the Workplace: Hearing Before the Senate Comm. on Health, Educ., Labor, and Pensions, 106th Cong. 31 (2000) (statement of Thomas Daschle, Senator).
84. See, e.g., Marvin R. Natowicz et al., Genetic Discrimination and the Law, 50 AM. J. HUM. GENETICS 465, 466 (1992) (defining "genetic discrimination" as "discrimination against an individual or against members of that individual's family solely because of real or perceived differences from the 'normal' genome in the genetic constitution of that individual"). Their definition distinguishes "genetic discrimination from discrimination based on disabilities caused by altered genes by excluding from the former category discrimination against an individual who at the time of the discriminatory act is affected by the genetic disease." Id. (emphasis added). This distinction is somewhat ambiguous, however, because an individual might be affected by a genetic disease without being disabled by it. For example, Natowicz et al. include within their definition discrimination against individuals with phenylketonuria (PKU) and hemochromatosis because the symptoms related to these disorders can be largely controlled with proper treatment. Id. Although such individuals are not disabled, it does not seem quite accurate to say that they are not "affected" by the genetic disease when they require regular treatment (in the case of hemochromatosis) or a severely restricted diet (in the case of PKU) in order to avoid symptoms.
85. See, e.g., E. Virginia Lapham et al., Genetic Discrimination: Perspectives of Consumers, 274 SCI. 621 (1996).
86. Although this distinction offers a useful working definition for the term "genetic discrimination," some cases will inevitably fall into a gray area. For example, an individual's blood test might reveal an abnormal level of a certain protein, indicating an underlying genetic anomaly. The test does not directly detect the presence of a particular genetic mutation, but is clinically associated with a genetic disease. If an employer acts on that information, has it engaged in genetic discrimination? This line drawing problem arises because of the increasing difficulty of distinguishing "genetic" from "nongenetic" information in the medical context, a difficulty implicit in any attempt to prohibit genetic discrimination. As I argue infra Part V.B, one virtue of a privacy rights approach is that it makes explicit the difficult policy choices involved in defining what types of information warrant protection.
87. Of course, the firing in the latter case is not necessarily legal. If the lung disease constitutes a disability for purposes of the ADA, discharging the worker may constitute unlawful disability discrimination.
88. Michael Kinsley, Baby Needs a New Set of Genes, SLATE ARCHIVES, at http://slate.msn.com/ (Apr. 20, 2000); see also Andrew Sullivan, Promotion of the Fittest, N.Y. TIMES MAG., July 23, 2000, at 16.
89. Michael Kinsley, Baby Needs a New Set of Genes, SLATE ARCHIVES, at http://slate.msn.com/ (Apr. 20, 2000); see also Andrew Sullivan, Promotion of the Fittest, N.Y. TIMES MAG., July 23, 2000, at 16.
90. The symptoms characteristic of CMT - weakness and atrophy of distal muscles in the feet and/or hands, depressed tendon reflexes and loss of sensation - may also result from a wide variety of nongenetic causes. Methods for distinguishing genetic from nongenetic causes of these symptoms include obtaining a family history and molecular genetic testing. See Thomas D. Bird, Charcot-Marie-Tooth Hereditary Neuropathy Overview, at http://www.geneclinics.org/profiles/cmt/index.html (June 27, 2001).
91. See discussion infra Part III.B.
92. In Norman-Bloodsaw v. Lawrence Berkeley Laboratory, the plaintiffs alleged that the employer had conducted a number of medical tests, including a genetic test for sickle cell trait, on samples of their blood without their knowledge or consent. 135 F.3d 1260, 1265 (9th Cir. 1998). The EEOC's case against Burlington Northern, filed in February 2001, similarly alleged that the employer had collected blood samples from workers for DNA testing without informing them. See Lewin, supra note 6.
93. A 1998 American Management Association survey of its member companies reported that 5.7% of the firms conducted genetic testing. AM. MGMT. ASS'N, 1998 AMA SURVEY: WORKPLACE TESTING AND MONITORING 5. However, gauging the extent of employer testing was made more difficult because of lay misunderstandings of what constitutes "genetic testing." Follow-up interviews suggested confusion about what constitutes genetic testing. After human resources personnel were provided with a formal definition of genetic testing, thirty-five out of forty-four of the respondents changed their original response, indicating that the testing conducted was not genetic in nature. The AMA survey conducted the following year changed the format of questions asked, making a direct comparison difficult. The 1999 survey reported that among the companies surveyed, 0.9% tested for sickle cell anemia, 0% tested for Huntington's Disease, 4.3% tested for breast/colon cancer, 16.7% tested for susceptibility to workplace hazards and 24.4% obtained family medical histories. AM. MGMT. ASS'N, 1999 AMA SURVEY: WORKPLACE TESTING AND MONITORING 2. Although the summary nature of the report makes it impossible to know whether the reported testing was genetic in nature, each of these categories of testing potentially gives the employer access to genetic information about its employees.
94. Only a handful of studies have attempted to document the prevalence of genetic discrimination. See Paul R. Billings et al., Discrimination as a Consequence of Genetic Testing, 50 AM. J. HUM. GENETICS 476 (1992); Lisa N. Geller et al., Individual. Family, and Societal Dimension of Genetic Discrimination: A Case Study Analysis, 2 SCI. & ENGINEERING ETHICS 71 (1996); Lapham et al., supra note 55. Each of these three studies sought to document instances of genetic discrimination in employment, as well as in other contexts such as life or heath insurance. Although these studies offer some evidence that genetic discrimination can occur, the methodologies used make it difficult to generalize their findings. See Billings et al., supra, at 477 ("This paper describes the results of a preliminary study . . . . [It] is not a survey; it does not purport to give statistically significant information . . . ."); Geller et al., supra, at 83 (noting that "this study is not a survey, but rather and [sic] attempt to collect case studies . . . [because] any statistcal analysis of the cases would be both inappropriate and unnecessary"); Lapham et al., supra note 55, at 621 (because the respondents were volunteers recruited through genetic support groups, the findings of their study are only applicable to those participants). Methodelogical limitations also make it difficult to distinguish perceived from actual incidents of discrimination Geller et al., supra, at 83 (reporting that it is uncertain "to what extent reports of genetic discrimination are of actual rather than perceived discrimination"); Lapham et al., supra note 55, at 621 (reporting "prejudicial actions as perceived by the respondents" (emphasis added)).
95. Only a handful of studies have attempted to document the prevalence of genetic discrimination. See Paul R. Billings et al., Discrimination as a Consequence of Genetic Testing, 50 AM. J. HUM. GENETICS 476 (1992); Lisa N. Geller et al., Individual. Family, and Societal Dimension of Genetic Discrimination: A Case Study Analysis, 2 SCI. & ENGINEERING ETHICS 71 (1996); Lapham et al., supra note 55. Each of these three studies sought to document instances of genetic discrimination in employment, as well as in other contexts such as life or heath insurance. Although these studies offer some evidence that genetic discrimination can occur, the methodologies used make it difficult to generalize their findings. See Billings et al., supra, at 477 ("This paper describes the results of a preliminary study . . . . [It] is not a survey; it does not purport to give statistically significant information . . . ."); Geller et al., supra, at 83 (noting that "this study is not a survey, but rather and [sic] attempt to collect case studies . . . [because] any statistcal analysis of the cases would be both inappropriate and unnecessary"); Lapham et al., supra note 55, at 621 (because the respondents were volunteers recruited through genetic support groups, the findings of their study are only applicable to those participants). Methodelogical limitations also make it difficult to distinguish perceived from actual incidents of discrimination Geller et al., supra, at 83 (reporting that it is uncertain "to what extent reports of genetic discrimination are of actual rather than perceived discrimination"); Lapham et al., supra note 55, at 621 (reporting "prejudicial actions as perceived by the respondents" (emphasis added)).
96. See Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix3.html; Malinowski, supra note 45, at 32.
97. Andrew Pollack, Buoyed by Mergers, Medical Labs Await Era of Gene Testing, N.Y. TIMES, June 14, 2001, at C1.
98. Philip R. Reilly, Genetic Discrimination, in GENETIC TESTING AND THE USE OF INFORMATION 106, 118 (Clarissa Long ed., 1999).
99. See, e.g., Geller et al., supra note 63, at 79; Lapham et al., supra note 55, at 623.
100. See Sally Lehrman, Jewish Leaders Seek Genetic Guidelines, 389 NATURE 322 (1997).
101. 42 U.S.C. § 2000e to 2000e-17 (1994).
102. 42 U.S.C. §§ 12101-12213.
103. 135 F.3d 1260, 1272 (9th Cir. 1998).
104. It has been estimated that one out of every ten to twelve African-Americans are carriers of the sickle cell trait, and that the disease affects approximately 0.2% of that population. See Final Report, supra note 25 at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix6.html. The incidence of Tay Sachs Disease (TSD) has been estimated to be about 100 times less among Sephardic Jews and all non-Jews than among Ashkenazi Jews. Michael M. Kaback, M.D., Hexosaminidase A Deficiency, at http://www.geneclinics.org (last modified Nov. 2, 2001). Recent screening and counseling programs implemented in the Ashkenazi Jewish community have reduced the incidence of TSD in that population in North America by more than 90%. Id. For both sickle cell and Tay-Sachs, the association commonly made between these diseases and the African-American and Jewish-American communities respectively has obscured the fact that they occur in other populations as well. Other ethnic groups of Mediterranean origin carry the sickle cell trait, see Final Report supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix6.html, and the genetic mutations associated with Tay-Sachs have been found among certain populations of French Canadians, Cajuns from Louisiana and the Amish in Pennsylvania in frequencies similar to or even exceeding the rate among Ashkenazi Jews. Kaback, supra.
105. It has been estimated that one out of every ten to twelve African-Americans are carriers of the sickle cell trait, and that the disease affects approximately 0.2% of that population. See Final Report, supra note 25 at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix6.html. The incidence of Tay Sachs Disease (TSD) has been estimated to be about 100 times less among Sephardic Jews and all non-Jews than among Ashkenazi Jews. Michael M. Kaback, M.D., Hexosaminidase A Deficiency, at http://www.geneclinics.org (last modified Nov. 2, 2001). Recent screening and counseling programs implemented in the Ashkenazi Jewish community have reduced the incidence of TSD in that population in North America by more than 90%. Id. For both sickle cell and Tay-Sachs, the association commonly made between these diseases and the African-American and Jewish-American communities respectively has obscured the fact that they occur in other populations as well. Other ethnic groups of Mediterranean origin carry the sickle cell trait, see Final Report supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix6.html, and the genetic mutations associated with Tay-Sachs have been found among certain populations of French Canadians, Cajuns from Louisiana and the Amish in Pennsylvania in frequencies similar to or even exceeding the rate among Ashkenazi Jews. Kaback, supra.
106. It has been estimated that one out of every ten to twelve African-Americans are carriers of the sickle cell trait, and that the disease affects approximately 0.2% of that population. See Final Report, supra note 25 at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix6.html. The incidence of Tay Sachs Disease (TSD) has been estimated to be about 100 times less among Sephardic Jews and all non-Jews than among Ashkenazi Jews. Michael M. Kaback, M.D., Hexosaminidase A Deficiency, at http://www.geneclinics.org (last modified Nov. 2, 2001). Recent screening and counseling programs implemented in the Ashkenazi Jewish community have reduced the incidence of TSD in that population in North America by more than 90%. Id. For both sickle cell and Tay-Sachs, the association commonly made between these diseases and the African-American and Jewish-American communities respectively has obscured the fact that they occur in other populations as well. Other ethnic groups of Mediterranean origin carry the sickle cell trait, see Final Report supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix6.html, and the genetic mutations associated with Tay-Sachs have been found among certain populations of French Canadians, Cajuns from Louisiana and the Amish in Pennsylvania in frequencies similar to or even exceeding the rate among Ashkenazi Jews. Kaback, supra.
107. See, e.g., EEOC Order No. 915.002 § 902, printed in 2 EEOC COMPLIANCE MANUAL 902-45 (1995); Liu, supra note 9; Miller, supra note 10, at 238-7; Rachinsky, supra note 10, at 590; Deborah Gridley Note Genetic Testing Under the ADA: A Case for Protection from Employment Discrimmation, 89 GEO. L.J. 973 (2001). But see Laura F. Rothstein, Genetic Discrimination: Why Bragdon Does Not Ensure Protection, 3 J. HEALTH CARE L. & POL'Y 330 (2000).
108. See, e.g., EEOC Order No. 915.002 § 902, printed in 2 EEOC COMPLIANCE MANUAL 902-45 (1995); Liu, supra note 9; Miller, supra note 10, at 238-7; Rachinsky, supra note 10, at 590; Deborah Gridley Note Genetic Testing Under the ADA: A Case for Protection from Employment Discrimmation, 89 GEO. L.J. 973 (2001). But see Laura F. Rothstein, Genetic Discrimination: Why Bragdon Does Not Ensure Protection, 3 J. HEALTH CARE L. & POL'Y 330 (2000).
109. See, e.g., EEOC Order No. 915.002 § 902, printed in 2 EEOC COMPLIANCE MANUAL 902-45 (1995); Liu, supra note 9; Miller, supra note 10, at 238-7; Rachinsky, supra note 10, at 590; Deborah Gridley Note Genetic Testing Under the ADA: A Case for Protection from Employment Discrimmation, 89 GEO. L.J. 973 (2001). But see Laura F. Rothstein, Genetic Discrimination: Why Bragdon Does Not Ensure Protection, 3 J. HEALTH CARE L. & POL'Y 330 (2000).
110. 42 U.S.C. § 12102(2) (1994). 75 Id. § 12102(2)(B).
111. EEOC Order No. 915.002 § 902, supra note 73.
112. Bragdon v. Abbott, 524 U.S. 624, 661 (1998) (Rehnquist, J., joined by Scalia, J. and Thomas, J., concurring in part and dissenting in part).
113. See 42 U.S.C. § 12112(d)(2) (1994) (Other than "inquiries into the ability of an applicant to perform job-related functions," an employer is prohibited from conducting a medical examination or making inquires as to whether an applicant has a disability prior to extending a job offer.).
114. See id. § 12112(d)(3), (4).
115. Id. § 12112(d)(3)(C); see also id. § 12112(d)(4)(C). 81 See id. § 12112(a), (b) (defining discrimination under the ADA).
116. See sources cited supra note 11.
117. S. 318, 107th Cong. (2001); H.R. 602, 107th Cong. (2001).
118. Indeed some states have simply inserted genetic characteristics as a protected basis along with race and sex in existing civil rights statutes. See. e.g., ARIZ. REV. STAT. § 41-1463(B)(4) (1998).
119. Price Waterhouse v. Hopkins, 490 U.S. 228, 239 (1989) (Brennan, J., plurality opinion).
120. See 42 U.S.C. § 2000e-2(a) (1994).
121. City of Clebume v. Cleburne Living Ctr., 473 U.S. 432, 440 (1985).
122. See Paul Brest, Foreword: In Defense of the Antidiscrimination Principle, 90 HARV. L. REV. 1, 7 (1976).
123. Price Waterhouse, 490 U.S. at 251.
124. See id. at 244 ("[W]hile an employer may not take gender into account in making an employment decision . . . it is free to decide against a woman for other reasons.").
125. Title VII does not prohibit firing an employee based on personal animus where the action cannot be shown to be racially motivated. See St. Mary's Honor Ctr. v. Hicks, 509 U.S. 502 (1993); see also Foster v. Dalton, 71 F.3d 52 (1st Cir. 1995) (holding that an employer's failure to promote a black woman that was motivated by cronyism rather than discrimination does not violate Title VII).
126. See, e.g., Washington v. Davis, 426 U.S. 229 (1976).
127. See, e.g., Barbara J. Flagg, Fashioning a Title VII Remedy for Transparently White Subjective Decisionmaking, 104 YALE L.J. 2009 (1995); Linda Hamilton Krieger, The Content of Our Categories: A Cognitive Bias Approach to Discrimination and Equal Employment Opportunity, 47 STAN. L. REV. 1161 (1995); Charles R. Lawrence III, The Id. the Ego, and Equal Protection: Reckoning with Unconscious Racism, 39 STAN. L. REV. 317 (1987).
128. See, e.g., Barbara J. Flagg, Fashioning a Title VII Remedy for Transparently White Subjective Decisionmaking, 104 YALE L.J. 2009 (1995); Linda Hamilton Krieger, The Content of Our Categories: A Cognitive Bias Approach to Discrimination and Equal Employment Opportunity, 47 STAN. L. REV. 1161 (1995); Charles R. Lawrence III, The Id. the Ego, and Equal Protection: Reckoning with Unconscious Racism, 39 STAN. L. REV. 317 (1987).
129. See, e.g., Barbara J. Flagg, Fashioning a Title VII Remedy for Transparently White Subjective Decisionmaking, 104 YALE L.J. 2009 (1995); Linda Hamilton Krieger, The Content of Our Categories: A Cognitive Bias Approach to Discrimination and Equal Employment Opportunity, 47 STAN. L. REV. 1161 (1995); Charles R. Lawrence III, The Id. the Ego, and Equal Protection: Reckoning with Unconscious Racism, 39 STAN. L. REV. 317 (1987).
130. On one level this claim simply restates positive law: Title VII makes these considerations irrelevant to employment decisions. See Price Waterhouse, 490 U.S. at 239. More commonly, however, this point is raised as a moral claim: an individual's race and sex should have no relevance to assessing her potential or past job performance. Implicit in this claim is "a rejection of any views of innate inferiority." Owen M. Fiss, A Theory of Fair Employment Laws, 38 U. CHI. L. REV. 235, 241 (1971).
131. See 42 U.S.C. § 2000e-2(e)(1) (1994) (providing that distinctions based on religion, sex or national origin are not unlawful "in those certain instances where religion, sex, or national origin is a bona fide occupational qualification reasonably necessary to the normal operation of that particular business or enterprise"). The ADEA also permits a BFOQ defense to allegations of age discrimination. 29 U.S.C. § 623(f)(1) (2000).
132. Dothard v. Rawlinson, 433 U.S. 321, 333 (1977) (quoting Diaz v. Pan Am. World Airways, Inc., 442 F.2d 385, 388 (5th Cir. 1971)).
133. See, e.g., Brest, supra note 88, at 6; Fiss, supra note 94, at 257; Richard A. Posner, The Efficiency and the Efficacy of Title VII, 136 U. PA. L. REV. 513, 516 (1987).
134. See, e.g., Brest, supra note 88, at 10-11. Part IV, infra, discusses the issue of statistical discrimination in greater detail.
135. In the opening paragraphs of the statute, Congress explicitly found that "unlike individuals who have experienced discrimination on the basis of race, color, sex, national origin, religion, or age, individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination." 42 U.S.C. § 12101(a)(4) (1994). The congressional findings also include statements such as "individuals with disabilities are a discrete and insular minority . . . subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society," id. § 12101(a)(7), "historically, society has tended to isolate and segregate individuals with disabilities," id. § 12101(a)(2), and "census data, national polls, and other studies have documented that people with disabilities, as a group, occupy an inferior status in our society," id. § 12101(a)(6). By echoing language used to describe the experience of African-Americans, the ADA suggests that the same arguments that support the ban on race discrimination justify the legal protections it enacts for individuals with disabilities.
136. See Arlene B. Mayerson, Restoring Regard for the "Regarded As" Prong: Giving Effect to Congressional Intent, 42 VILL. L. REV. 587, 587 (1997); Peter David Blanck & Mollie Weighner Marti, Attitudes, Behavior and the Employment Provisions of the Americans with Disabilities Act. 42 VILL. L. REV. 345, 352 (1997); Mary Crossley, The Disability Kaleidoscope, 74 NOTRE DAME L. REV. 621, 623 (1999); Catherine J. Lanctot, Ad Hoc Decision Making and Per Se Prejudice: How Individualizing the Determination of "Disability " Undermines the ADA, 42 VILL. L. REV. 327, 329 (1997).
137. See Arlene B. Mayerson, Restoring Regard for the "Regarded As" Prong: Giving Effect to Congressional Intent, 42 VILL. L. REV. 587, 587 (1997); Peter David Blanck & Mollie Weighner Marti, Attitudes, Behavior and the Employment Provisions of the Americans with Disabilities Act. 42 VILL. L. REV. 345, 352 (1997); Mary Crossley, The Disability Kaleidoscope, 74 NOTRE DAME L. REV. 621, 623 (1999); Catherine J. Lanctot, Ad Hoc Decision Making and Per Se Prejudice: How Individualizing the Determination of "Disability " Undermines the ADA, 42 VILL. L. REV. 327, 329 (1997).
138. See Arlene B. Mayerson, Restoring Regard for the "Regarded As" Prong: Giving Effect to Congressional Intent, 42 VILL. L. REV. 587, 587 (1997); Peter David Blanck & Mollie Weighner Marti, Attitudes, Behavior and the Employment Provisions of the Americans with Disabilities Act. 42 VILL. L. REV. 345, 352 (1997); Mary Crossley, The Disability Kaleidoscope, 74 NOTRE DAME L. REV. 621, 623 (1999); Catherine J. Lanctot, Ad Hoc Decision Making and Per Se Prejudice: How Individualizing the Determination of "Disability " Undermines the ADA, 42 VILL. L. REV. 327, 329 (1997).
139. See Arlene B. Mayerson, Restoring Regard for the "Regarded As" Prong: Giving Effect to Congressional Intent, 42 VILL. L. REV. 587, 587 (1997); Peter David Blanck & Mollie Weighner Marti, Attitudes, Behavior and the Employment Provisions of the Americans with Disabilities Act. 42 VILL. L. REV. 345, 352 (1997); Mary Crossley, The Disability Kaleidoscope, 74 NOTRE DAME L. REV. 621, 623 (1999); Catherine J. Lanctot, Ad Hoc Decision Making and Per Se Prejudice: How Individualizing the Determination of "Disability " Undermines the ADA, 42 VILL. L. REV. 327, 329 (1997).
140. 42 U.S.C. § 12102(2) (1994).
141. See id. § 12112(b)(5)(A).
142. See id. § 12111(8).
143. See Weatherall, supra note 33, at 1118.
144. See Understanding Gene Testing, supra note 25, at http://www.accessexcellence.org/AE/AEPC/ NIH/gene10.html.
145. A genetic anomaly might actually produce an associated disease, making it easier to identify affected individuals. Once clinical symptoms appear, however, the social risks confronting the individual do not differ from those facing any other person with that illness. The genetic factor is unlikely to affect the social response to the disease. If anything, knowing the genetic origin of the disease may reduce hostility toward the affected individual. In contrast to infectious diseases, such as AIDS, genetic diseases are not transmissible and are generally viewed as beyond the control of the individual.
146. Mary-Claire King et al., Inherited Breast and Ovarian Cancer: What Are the Risks? What Are the Choices?, 269 JAMA 1975, 1978 (1993).
147. As discussed supra p. 1518, some argue that statistical race discrimination can be rational. I discuss the concept of statistical discrimination in the context of both race and genetic discrimination infra Part IV.
148. See Robert N. Proctor, Genomics and Eugenics: How Fair Is the Comparison?, in GENE MAPPING: USING LAW AND ETHICS AS GUIDES 57, 61 (George J. Annas & Sherman Elias eds., 1992). The constitutionality of such laws was upheld by the United States Supreme Court in Buck v. Bell, 274 U.S. 200 (1927).
149. See Proctor, supra note 109, at 61.
150. Id. at 72; see also Patricia A. King, The Past as Prologue: Race, Class, and Gene Discrimination, in GENE MAPPING: USING LAW AND ETHICS AS GUIDES, supra note 109, at 94, 98-99; Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/appendix3.html.
151. See, e.g., King, supra note 111, at 96; DOROTHY ROBERTS, KILLING THE BLACK BODY: RACE, REPRODUCTION, AND THE MEANING OF LIBERTY 70-79 (1997).
152. The risk remains, however, that emerging genetic technologies will be used in ways that particularly disadvantage minority populations. See King, supra note 111, at 99-102.
153. See, e.g., John J. Donohue III & James Heckman, Continuous Versus Episodic Change: The Impact of Civil Rights Policy on the Economic Status of Blacks, 29 J. ECON. LITIG. 1603 (1991); Alfred W. Blumrosen, The Law Transmission System and the Southern Jurisprudence of Employment Discrimination, 6 IND. REL. L.J. 313 (1984).
154. See, e.g., John J. Donohue III & James Heckman, Continuous Versus Episodic Change: The Impact of Civil Rights Policy on the Economic Status of Blacks, 29 J. ECON. LITIG. 1603 (1991); Alfred W. Blumrosen, The Law Transmission System and the Southern Jurisprudence of Employment Discrimination, 6 IND. REL. L.J. 313 (1984).
155. See Donohue & Heckman, supra note 114, at 1637-40.
156. See John J. Donohue III & Peter Siegelman, The Changing Nature of Employment Discrimination Litigation, 43 STAN. L. REV. 983 (1991).
157. See, e.g., Blumrosen, supra note 114, at 348-449; Donohue & Heckman, supra note 114, at 1639-40; Frank Dobbin et al., Equal Opportunity Law and the Construction of Internal Labor Markets, 99 AM. J. SOC. 396, 405-06 (1993).
158. See, e.g., Blumrosen, supra note 114, at 348-449; Donohue & Heckman, supra note 114, at 1639-40; Frank Dobbin et al., Equal Opportunity Law and the Construction of Internal Labor Markets, 99 AM. J. SOC. 396, 405-06 (1993).
159. See Donohue & Siegelman, supra note 116, at 1015, 1019.
160. Tex. Dept. of Cmty. Affairs v. Burdine, 450 U.S. 248, 253 (1981); St. Mary's Honor Ctr. v. Hicks, 509 U.S. 502, 511 (1993).
161. Recognizing this, the Supreme Court has created a framework of shifting evidentiary burdens in an effort to prescribe a "sensible, orderly way to evaluate the evidence" in disparate treatment cases. Fumco Constr. v. Waters, 438 U.S. 567, 577 (1978). Under this framework, proof in a disparate treatment case unfolds as follows: First the plaintiff has the burden of proving by the preponderance of the evidence a prima facie case of discrimination. Second, if the plaintiff succeeds in proving the prima facie case, the burden shifts to the defendant to articulate some legitimate, nondiscriminatory reason for the employee's rejection. Third, should the defendant carry this burden, the plaintiff must then have an opportunity to prove by a preponderance of the evidence that the legitimate reasons offered by the defendant were not its true reasons, but were a pretext for discrimination. Burdine, 450 U.S. at 252-53; accord McDonnell Douglas Corp. v. Green, 411 U.S. 792 (1973) (laying out shifting evidentiary burdens in individual employment discrimination cases). Although permitting plaintiffs to proceed on the basis of circumstantial evidence in Title VII cases, the Supreme Court has made clear that the "ultimate question" remains whether the defendant intentionally discriminated on a forbidden basis. St. Mary's Honor Ctr. v. Hicks, 509 U.S. 502, 511 (1993).
162. See McDonnell Douglas, 411 U.S. at 804.
163. However, after the Supreme Court's opinion in Hicks, disproving the employer's reasons for its actions may not be sufficient; the trier of fact might disbelieve the employer's explanation, yet still find that the plaintiff failed to prove intentional discrimination. See Hicks, 509 U.S. 502.
164. Griggs v. Duke Power Co., 401 U.S. 424 (1971). Once a disparate impact has been shown, the employer bears the burden of demonstrating that the challenged practice "is job related . . . and consistent with business necessity." 42 U.S.C. § 2000e-2(k)(1)(A)(i) (1994).
165. See Dothard v. Rawlinson, 433 U.S. 321, 331 (1977).
166. See, e.g., Hicks, 509 U.S. at 508 n.2.
167. See, e.g., Wards Cove Packing Co. v. Atonio, 490 U.S. 642 (1989); Dothard, 433 U.S. at 330.
168. See Lawrence, supra note 93, Krieger, supra note 93.
169. See Flagg, supra note 93.
170. See Donohue & Siegelman, supra note 116, at 106-08; Michael Selmi, The Value of the EEOC: Reexamining the Agency's Role in Employment Discrimination Law, 57 OHIO ST. L.J. 1 (1996).
171. See Donohue & Siegelman, supra note 116, at 106-08; Michael Selmi, The Value of the EEOC: Reexamining the Agency's Role in Employment Discrimination Law, 57 OHIO ST. L.J. 1 (1996).
172. See Ian Ayres & Peter Siegelman, The Q-Word as Red Herring: Why Disparate Impact Liability Does Not Induce Hiring Quotas, 74 TEX. L. REV. 1487, 1494-96 (1996).
173. Id. at 1492; Dobbin et al., supra note 117.
174. See Ayres & Siegelman, supra note 130, at 1492.
175. See id. at 1494 n.27, 1496.
176. See Ruth Colker, Winning and Losing Under the Americans with Disabilities Act, 62 OHIO ST. L.J. 239, 253-57 (2001).
177. See ABA, Study Finds Employers Win Most ADA Title I Judicial and Administrative Complaints, 22 MENTAL & PHYSICAL DISABILITY L. REP. 403 (1998); ABA, Trend: Employment Decisions Under ADA Title I - Survey Update, 23 MENTAL & PHYSICAL DISABILITY L. REP. 294 (1999).
178. See ABA, Study Finds Employers Win Most ADA Title I Judicial and Administrative Complaints, 22 MENTAL & PHYSICAL DISABILITY L. REP. 403 (1998); ABA, Trend: Employment Decisions Under ADA Title I - Survey Update, 23 MENTAL & PHYSICAL DISABILITY L. REP. 294 (1999).
179. This threshold issue has produced considerable litigation. Researchers suggest that the courts' narrow interpretation of the definition of "disability" has contributed to high employer win rates under the ADA. See sources cited supra note 135.
180. Sutton v. United Air Lines, Inc., 527 U.S. 471, 482 (1999). The Supreme Court in Sutton considered the ADA definition of "disability," and construed the term narrowly. The plaintiffs in Sutton, twin sisters, alleged that the airline engaged in disability discrimination when it refused to hire them as airline pilots. Both suffered from severe myopia; however, when wearing glasses, their vision was essentially normal. The Court rejected their argument that the disability determination should be based on their visual impairment in its unconnected state, ruling instead that mitigating measures must be taken into account. Because the plaintiffs' vision was fully corrected by lenses, it concluded that they were not disabled, and hence, not protected under the statute. Id. at 482.
181. Id. at 483.
182. The Sutton Court reinforced its narrow reading of the term "disability" by reiving on the congressional findings, enacted as part of the ADA, that "some 43,000,000 Americans have one or more physical or mental disabilities." Id. at 484 (citing 42 U.S.C. § 12101(a)(1) (1994)). Holding that that finding "gives content to the ADA's terms, specifically the term 'disability,'" it concluded that the 43 million disabled figure was inconsistent with determining disability without regard to corrective measures. Id. at 487. Justice Ginsburg's concurrence further highlighted the significance of the congressional findings: by describing persons with disabilities as a "discrete and insular minority," Congress indicated "its intent to restrict the ADA's coverage to a confined, and historically disadvantaged, class." Id. at 495. Given that everyone is believed to carry some genetic anomalies, the Court's reliance on the 43 million figure seems inconsistent with including asymptomatic genetic anomalies in the ADA'S definition of disability. See also Toyota Motor Mfg. v. Williams, 122 S. Ct. 681, 691 (2002) (stating that congressional findings confirm the need "to create a demanding standard for qualifying as disabled").
183. 524 U.S. 614 (1998).
184. Id. at 632-41.
185. Id. at 637.
186. Id. at 639-41.
187. Id. at 633.
188. According to the Sutton Court, there are two ways a plaintiff might fall within the definition of an individual "regarded as" having a disability: "(1) a covered entity mistakenly believes that a person has a physical impairment that substantially limits one or more major life activities, or (2) a covered entity mistakenly believes that an actual, nonlimiting impairment substantially limits one or more major life activities." Sutton, 527 U.S. at 489.
189. Id.
190. Miller, supra note 10, at 246. The EEOC regulations define "major life activities" as "functions such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working." 29 C.F.R. § 1630.2(i) (2001). Relying on "working" as the "major life activity" that is substantially limited appears to be disfavored. The EEOC regulations suggest that "working" be considered only if an individual is not substantially impaired with respect to any other major life activity. Id. § 1630.2(j) app. In Sutton, the Supreme Court suggested some skepticism about the validity of including "working" in the definition of a "major life activity," noting that "there may be some conceptual difficulty . . . for it seems 'to argue in a circle to say that if one is excluded, for instance, by reason of [an impairment, from working with others] . . . that exclusion constitutes an impairment, when the question you're asking is, whether the exclusion itself is by reason of handicap." Sutton, 527 U.S. at 492. Rather than address this "conceptual difficulty," the Supreme Court in Sutton merely "assum[ed] without deciding that working is a major life activity." Id.
191. Sutton, 527 U.S. at 491-92.
192. Miller argues that an employer's fears that a genetic predisposition will lead to increased absences and health insurance costs, and reduced productivity in the future would evidence the employer's belief that the affected individual is unable to work in a broad class of jobs. Miller, supra note 10, at 246. However, the Supreme Court undercut this argument when it held in Sutton that "[i]t is not enough to say that if the . . . criteria of a single employer were imputed to all similar employers one would be regarded as substantially limited in the major life activity of working only as a result of this imputation." 527 U.S. at 493.
193. Rothstein makes a parallel argument in discussing laws prohibiting insurance companies from utilizing genetic test. See Mark A. Rothstein, Genetic Privacy and Confidentiality: Why They Are So Hard to Protect, 26 J.L. MED. & ETHICS 198, 199 (1998).
194. The analogy is not exact, however. An employer might rationally use race as a proxy when the cost of directly gathering the relevant information, such as the actual quality of an individual's education, is high. Genetic discrimination differs in that the relevant individualized information (i.e., whether this individual will actually contract the disease or not) is not merely costly to obtain, but unknowable at the time the employer acts.
195. See Kimberlé Williams Crenshaw, Race, Reform, and Retrenchment: Transformation and Legitimation in Anti-Discrimination Law, 101 HARV. L. REV. 1331, 1370-71 (1988).
196. As Brest has put it: To the unprejudiced employer who would prefer white applicants to blacks solely for reasons of efficiency, the antidiscrimination principle says in effect: "If you were the only one to do this, we would permit you to make efficient generalizations based on race. But so many other firms might employ similar generalizations that black individuals would suffer great cumulative harms. And, in the absence of an overriding justification, this cannot be permitted." Brest, supra note 88, at 10-11.
197. See John J. Donohue III, Further Thoughts on Employment Discrimination Legislation. A Reply to Judge Posner, 136 U. PA. L. REV. 523, 532-33 (1987).
198. The Task Force on Genetic Testing specifically raised concerns about the lack of knowledge of genetics among health care providers. See Final Report, supra note 25, at http://www.nhgri.nih.gov/ ELSI/TFGT_final/#CHAPTER4. Based on those concerns, it recommended that consumers discuss options with "a health care provider competent in genetics" before undergoing genetic testing, and that both health care professionals and consumers receive more education about the limits and appropriate uses of genetic tests. Id.
199. NELKIN & LINDEE, supra note 50, at 2.
200. James Watson, The Double Helix Revisited: The Man Who Launched the Human Genome Project Celebrates Its Success, TIME, July 3, 2000, at 30.
201. Arthur Fisher, Disease Fighters: A Look at Where the Genome Breakthrough Is Now Leading Researchers, WALL ST. J., Nov. 6, 2000, at A6.
202. Philip Elmer-Dewitt, The Genetic Revolution, TIME, Jan. 17, 1994, at 53.
203. Nat'l Human Genome Research Inst., Remarks by the President et al. on the Completion of the First Survey of the Entire Human Genome Project, at http://www.nhgri.nih.gov/NEWS/sequencing_ consortium2.html (June 26, 2000).
204. See, e.g., UAW v. Johnson Controls, Inc., 499 U.S. 187, 200 (1991) (holding that Title VII forbids employer's gender-based fetal-protection policy).
205. Cynthia Estlund argues that the workplace "is the single most important site of cooperative interaction and sociability among adult citizens outside the family" and as such performs many of the functions of a healthy civil society, such as increasing social capital and social integration. Cynthia Estlund, Working Together: The Workplace, Civil Society and the Law, 89 GEO. L.J. 1, 3, 13-17 (2000).
206. See Kinsley, supra note 58; see also Sullivan, supra note 58. These critics argue that to the extent that any of the desired characteristics have a genetic basis, the distinction between commonly accepted employer practices and genetic discrimination disappears.
207. See Richard A. Epstein, The Legal Regulation of Genetic Discrimination: Old Responses to New Technology, 74 B.U. L. REV. 1, 12-13 (1994).
208. See, e.g., Skinner v. Ry. Labor Executives' Ass'n, 489 U.S. 602 (1989) (private medical facts); Zablocki v. Redhail, 434 U.S. 374(1978) (family relationships); Roe v. Wade, 410 U.S. 113 (1973) (reproductive decisions); Griswold v. Connecticut, 381 U.S. 479 (1965) (reproductive decisions).
209. See, e.g., Katherine A. Schneider, Adverse Impact of Predisposition Testing on Major Life Activities: Lessons from BRCA1/2 Testing, 3 J. HEALTH CARE L. & POL'Y 365, 370-75 (2000); see also sources cited supra note 46.
210. See Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER1; American Society of Clinical Oncology, Statement of the American Society of Clinical Oncology: Genetic Testing for Cancer Susceptibility, 14 J. CLINICAL ONCOLOGY 1730, 1732 (1996); W.C. McKinnon et al., Nat'l Soc'y of Genetic Counselors, Predisposition Genetic Testing for Late-Onset Disorders in Adults, 278 JAMA 1217, 1218-19 (1997); Gail Geller et al., Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent, 277 JAMA 1467 (1997).
211. See Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER1; American Society of Clinical Oncology, Statement of the American Society of Clinical Oncology: Genetic Testing for Cancer Susceptibility, 14 J. CLINICAL ONCOLOGY 1730, 1732 (1996); W.C. McKinnon et al., Nat'l Soc'y of Genetic Counselors, Predisposition Genetic Testing for Late-Onset Disorders in Adults, 278 JAMA 1217, 1218-19 (1997); Gail Geller et al., Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent, 277 JAMA 1467 (1997).
212. See Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER1; American Society of Clinical Oncology, Statement of the American Society of Clinical Oncology: Genetic Testing for Cancer Susceptibility, 14 J. CLINICAL ONCOLOGY 1730, 1732 (1996); W.C. McKinnon et al., Nat'l Soc'y of Genetic Counselors, Predisposition Genetic Testing for Late-Onset Disorders in Adults, 278 JAMA 1217, 1218-19 (1997); Gail Geller et al., Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent, 277 JAMA 1467 (1997).
213. See Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/TFGT_final/#CHAPTER1; American Society of Clinical Oncology, Statement of the American Society of Clinical Oncology: Genetic Testing for Cancer Susceptibility, 14 J. CLINICAL ONCOLOGY 1730, 1732 (1996); W.C. McKinnon et al., Nat'l Soc'y of Genetic Counselors, Predisposition Genetic Testing for Late-Onset Disorders in Adults, 278 JAMA 1217, 1218-19 (1997); Gail Geller et al., Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent, 277 JAMA 1467 (1997).
214. See David Craufurd et al., Uptake of Presymptomatic Predictive Testing for Huntington's Disease, 2 LANCET 603, 604 (1989); Maurice Bloch et al., Predictive Testing for Huntington's Disease, 32 AM. J. MED. GENETICS 217, 222 (1989); see also Andrews, supra note 45, at 249-51 (reporting low testing rates for Cystic Fibrosis and hereditary breast cancer, despite available technology).
215. See David Craufurd et al., Uptake of Presymptomatic Predictive Testing for Huntington's Disease, 2 LANCET 603, 604 (1989); Maurice Bloch et al., Predictive Testing for Huntington's Disease, 32 AM. J. MED. GENETICS 217, 222 (1989); see also Andrews, supra note 45, at 249-51 (reporting low testing rates for Cystic Fibrosis and hereditary breast cancer, despite available technology).
216. See David Craufurd et al., Uptake of Presymptomatic Predictive Testing for Huntington's Disease, 2 LANCET 603, 604 (1989); Maurice Bloch et al., Predictive Testing for Huntington's Disease, 32 AM. J. MED. GENETICS 217, 222 (1989); see also Andrews, supra note 45, at 249-51 (reporting low testing rates for Cystic Fibrosis and hereditary breast cancer, despite available technology).
217. This financial incentive exists because health insurance is typically experience rated. One way to eliminate or reduce the employer's incentive to eliminate higher health risk individuals from their workforces would be to require group health plans to be community rated or to nationalize the provision of health care in the United States. Although such changes would obviously reduce the incentives of employers to seek out and utilize genetic information, they are not likely to occur in the near term. For this reason, and because discussion of reforms in the area of health insurance is beyond the scope of this Article, I assume here that the link between health insurance and employment will continue.
218. The policy choice to provide health insurance primarily through employment sometimes leads to distortions in the labor market. For example, workers might find themselves trapped in a job that no longer best matches their skills or interests, unable to move to another job out of fear of losing health insurance coverage for their own or a family member's preexisting medical condition. See Nancy E. Kass, The Implications of Genetic Testing for Health and Life Insurance, in GENETIC SECRETS: PROTECTING PRIVACY AND CONFIDENTIALITY IN THE GENETIC ERA 299, 311 (Mark A. Rothstein ed., 1997). The Health Insurance Portability and Accountability Act of 1996 (HIPPA) which limits the use of preexisting condition exclusions for new employees, was passed in part in response to these concerns about "job lock." 42 U.S.C. § 300gg (Supp. V 1999).
219. Cf. HIPAA, 42 U.S.C. § 300gg(b)(1)(B) (prohibiting group health plans from using genetic information to deny coverage).
220. The Supreme Court recently confronted an analogous issue in Chevron v. Echazabal, 122 S. Ct. 2045 (2002). In that case, Chevron twice refused to hire the plaintiff, Mario Echazabal, to work in an oil refinery after its doctors said that exposure to toxins in the workplace would aggravate his liver condition. Echazabal sued under the ADA, and Chevron defended its actions by relying on an EEOC regulation that permits an employer to refuse to hire an individual, if working at that job would pose a direct threat to that worker's health and safety. The Court in Echazabal upheld the EECO regulation. Although it presents an analogous issue, the question whether an employer can exclude workers based on their genetic vulnerabilities to hazardous substances in the workplace is not directly covered by Echazabal. Genetic testing raises the possibility of detecting individual vulnerabilities to workplace hazards before any symptoms occur. In such a situation, the excluded workers would not be "disabled" under the statute, and therefore, the ADA would not apply. Even assuming that the Echazabal decision offers relevant guidance on the policy issues raised, it is unclear whether routine exclusion from hazardous workplaces based on genetic tests would be justified. In upholding the EEOC regulation, the Supreme Court emphasized that it "demands a particularized enquiry into the harms the employee would probably face," must be based upon "an expressly 'individualized assessment'" and must "consider[], among other things, the imminence of the risk and the severity of the harm portended." This analysis suggests that the weight that should be accorded an employer's interest in testing for genetic susceptibilities to workplace hazards will depend in part on the state of medical knowledge regarding the "imminence" of harm and its likely severity. For a more detailed discussion of the issue of genetic testing for workplace hazards, see Michael S. Yesley, Genetic Difference in the Workplace, 40 JURIMETRICS 129, 141-42 (1999); ELAINE DRAPER, RISKY BUSINESS: GENETIC TESTING AND EXCLUSIONARY PRACTICES IN THE HAZARDOUS WORKPLACE (1991).
221. The Supreme Court recently confronted an analogous issue in Chevron v. Echazabal, 122 S. Ct. 2045 (2002). In that case, Chevron twice refused to hire the plaintiff, Mario Echazabal, to work in an oil refinery after its doctors said that exposure to toxins in the workplace would aggravate his liver condition. Echazabal sued under the ADA, and Chevron defended its actions by relying on an EEOC regulation that permits an employer to refuse to hire an individual, if working at that job would pose a direct threat to that worker's health and safety. The Court in Echazabal upheld the EECO regulation. Although it presents an analogous issue, the question whether an employer can exclude workers based on their genetic vulnerabilities to hazardous substances in the workplace is not directly covered by Echazabal. Genetic testing raises the possibility of detecting individual vulnerabilities to workplace hazards before any symptoms occur. In such a situation, the excluded workers would not be "disabled" under the statute, and therefore, the ADA would not apply. Even assuming that the Echazabal decision offers relevant guidance on the policy issues raised, it is unclear whether routine exclusion from hazardous workplaces based on genetic tests would be justified. In upholding the EEOC regulation, the Supreme Court emphasized that it "demands a particularized enquiry into the harms the employee would probably face," must be based upon "an expressly 'individualized assessment'" and must "consider[], among other things, the imminence of the risk and the severity of the harm portended." This analysis suggests that the weight that should be accorded an employer's interest in testing for genetic susceptibilities to workplace hazards will depend in part on the state of medical knowledge regarding the "imminence" of harm and its likely severity. For a more detailed discussion of the issue of genetic testing for workplace hazards, see Michael S. Yesley, Genetic Difference in the Workplace, 40 JURIMETRICS 129, 141-42 (1999); ELAINE DRAPER, RISKY BUSINESS: GENETIC TESTING AND EXCLUSIONARY PRACTICES IN THE HAZARDOUS WORKPLACE (1991).
222. For example, the proposed federal legislation to prohibit genetic discrimination in employment does limit employer access to genetic information, but it fails to address the difficulties involved in defining and segregating that information. In addition, it follows the traditional civil rights statutes in vesting enforcement authority in the EEOC.
223. Thomas H. Murray, Genetic Exceptionalism and "Future Diaries": Is Genetic Information Different from Other Medical Information?, in GENETIC SECRETS: PROTECTING PRIVACY AND CONFIDENTIALITY IN THE GENETIC ERA, supra note 170, at 60, 61.
224. Id. at 64; Lawrence O. Gostin & James G. Hodge, Jr., Genetic Privacy and the Law: An End to Genetics Exceptionalism, 40 JURIMETRICS 21, 33-34 (1999); Suter, supra note 11.
225. Murray, supra note 174, at 64.
226. See Gostin & Hodge, supra note 175, at 35.
227. See, e.g., Toyota Motor Mfg. v. Williams, 534 U.S. 184 (2002); Sutton v. United Air Lines, Inc., 527 U.S. 471 (1999); Murphy v. United Parcel Serv., 527 U.S. 516 (1999).
228. Sonia Suter points out that limiting protection to medical conditions known to be genetic in origin may exacerbate social inequities, because many nongenetic risks, such as poverty and environmental hazards, tend to disproportionately affect already disadvantaged groups. See Suter, supra note 11, at 719-21.
229. See, e.g., Ronald M. Green & A. Mathew Thomas, DNA: Five Distinguishing Features for Policy Analysis, 11 HARV. J.L. & TECH. 571 (1998).
230. Gostin & Hodge, supra note 175, at 36.
231. Alternatively, it might be asserted that special treatment will only reinforce, rather than help to dismantle the "overly dramatic view of the significance of genetic information in our lives." Murray, supra note 174 at 71; see also Gostin & Hodge, supra note 175, at 33 ("Treating genetics as distinct from the rest of medicine may enhance the stigma of genetics testing, even as legislators attempt to remove its stigmatizing effects."); Suter, supra note 11, at 678-700, 740-41 (detailing the ways in which the media, scientists and legislators perpetuate the image of genes as uniquely powerful).
232. See, e.g., Murray, supra note 174, at 67-68; Gostin & Hodge, supra note 175, at 32; Suter, supra note 11, at 701-04; Mark A. Rothstein, Why Treating Genetic Information Separately Is a Bad Idea, 4 TEX. REV. L. & POL. 33 (1999).
233. See, e.g., Murray, supra note 174, at 67-68; Gostin & Hodge, supra note 175, at 32; Suter, supra note 11, at 701-04; Mark A. Rothstein, Why Treating Genetic Information Separately Is a Bad Idea, 4 TEX. REV. L. & POL. 33 (1999).
234. See, e.g., Houria Hendel et al., New Class I and II HLA Alleles Strongly Associated with Opposite Patterns of Progression to AIDS, 162 J. IMMUNOLOGY 6942 (1999); Maureen P. Martin et al., Genetic Acceleration of AIDS Progression by a Promoter Variant of CCR5, 282 SCI. 1907, 1907 (1998).
235. See, e.g., Houria Hendel et al., New Class I and II HLA Alleles Strongly Associated with Opposite Patterns of Progression to AIDS, 162 J. IMMUNOLOGY 6942 (1999); Maureen P. Martin et al., Genetic Acceleration of AIDS Progression by a Promoter Variant of CCR5, 282 SCI. 1907, 1907 (1998).
236. Gostin & Hodge, supra note 175, at 41.
237. The draft Genetic Privacy Act defines "private genetic information" as any information about an identifiable individual that is derived from the presence, absence, alteration, or mutation of a gene or genes, or the presence or absence of a specific DNA marker or markers, and that has been obtained: (1) from an analysis of the individual's DNA; or (2) from an analysis of the DNA of a person to whom the individual is related. Annas et al., supra note 19, at 362.
238. Id.
239. Cf. Skinner v. Ry. Labor Executives' Ass'n, 489 U.S. 602 (1989); Fraternal Order of Police v. Philadelphia, 812 F.2d 105 (3d Cir. 1987).
240. See 42 U.S.C. § 12112(d) (1994).
241. See 45 C.F.R. § 164.502(a) (2001) (prohibiting, generally, disclosure of protected health information subject to certain exceptions); id. § 164.508 (permitting disclosures pursuant to a written authorization).
242. A Minnesota law that takes this approach is discussed in Mark A. Rothstein et al., Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law, 24 AM. J.L. & MED. 399, 408-09 (1998).
243. See 45 C.F.R. § 164.508; Final Report, supra note 25, at http://www.nhgri.nih.gov/ELSI/ TFGT_final/#CHAPTER1 (permitting disclosure of genetic test results to employers with the test recipient's written consent).
244. See Pauline T. Kim, Privacy Rights, Public Policy, and the Employment Relationship, 57 OHIO ST. L.J. 671, 716-20 (1996).
245. See, e.g., Jennings v. Minco Tech. Labs, Inc., 765 S.W.2d 497, 502 (Tex. Ct. App. 1989).
246. See Geller et al., supra note 63, at 78.
247. See 42 U.S.C § 1981a (1994). Punitive damages are only available if the defendant acted "with malice or with reckless indifference to the federally protected rights of an aggrieved individual." Id § 1981a(b)(1). The total amount of compensatory and punitive damages that may be awarded is limited, based on the size of the defendant. Id. § 1981a(b)(3).
248. RESTATEMENT (SECOND) OF TORTS § 652H (1977).
249. See 42 U.S.C. § 2000e-4 to e-5 (1994).
250. See 29 U.S.C. § 626 (2000) (ADEA); 42 U.S.C. § 12117 (1994) (ADA).
251. The administrative process followed by the EEOC is described in greater detail in Selmi, supra note 129, at 5-11.
252. For example, the time deadline within which a complaining party must file a charge with the EEOC varies depending upon the existence of a state agency that also investigates employment discrimination claims. In addition, plaintiffs are limited in subsequent court actions by the scope of the administrative charge they filed with the EEOC. These and other procedural complexities are explained more fully in Selmi's account of EEOC procedures. Id. at 6-7.
253. Id. at 64.