When Public Health and Genetic Privacy Collide: Positive and Normative Theories Explaining How ACA's Expansion of Corporate Wellness Programs Conflicts with GINA's Privacy Rules

Journal of Law, Medicine and Ethics

Volumn 39, Issue 3, 2011, Pages 469-487

  Bard, Jennifer S ^a  

^a TEXAS TECH UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CONFERENCE PAPER; GENETIC PREDISPOSITION; GENETIC PRIVACY; HEALTH CARE COST; HEALTH CARE POLICY; HEALTH PROMOTION; HUMAN; LEGAL ASPECT; PERSONNEL MANAGEMENT; SOCIAL PSYCHOLOGY; UNITED STATES;

EMPLOYEE INCENTIVE PLANS; GENETIC PREDISPOSITION TO DISEASE; GENETIC PRIVACY; HEALTH CARE COSTS; HEALTH PROMOTION; HUMANS; PATIENT PROTECTION AND AFFORDABLE CARE ACT; PREJUDICE; UNITED STATES;

EID: 80051974185     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1111/j.1748-720X.2011.00615.x     Document Type: Conference Paper

References (114)

1. Patient Protection and Affordable Care Act (PPACA or ACA), Pub. L. No. 111-148, 124 Stat. 119 (2010) as amended by Health Care and Education Reform Act of 2010, Pub. L. No. 111-152, 124 Stat. 1209 (2010) (codified as amended in scattered sections of 42 U.S.C.).
2. G. P. Benjamin, "Proven Savings from Prevention, Early Intervention, "Washington Post, July 21, 2009, available at (last visited July 1, 2011).
3. ACA § 4303; There is no universally recognized definition of "Wellness." One typical description of a Wellness Program is a "comprehensive health program designed to maintain a high level of well-being through proper diet, light exercises, stress management, and illness prevention." See (last visited July 26, 2011).
4. Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA), 29 C.R.F. § 1635.8 (2010). Employee Wellness Programs are organized efforts by employers who provide health insurance to their employees to reduce illness and absenteeism by encouraging employees to adopt healthier lifestyles. These programs typically target behaviors like quitting smoking, losing weight, and lowering blood pressure and cholesterol.
5. This article adopts the definition provided by ACA for a "comprehensive workplace wellness program" which is one that includes the following: "1. health awareness initiatives, including health education, preventive screenings, and health risk assessments; 2. efforts to maximize employee engagement, including mechanisms to encourage employee participation; 3. initiatives to change unhealthy behaviors and lifestyle choices, including counseling, seminars, online programs, and self-help materials; and 4. supportive environments efforts, including workplace policies to encourage healthy lifestyles, healthy eating, increased physical activity, and improved mental health." (section 10408©). This article leaves for another time the argument that a population which protects its members from discrimination is, in fact, acting in its own best interests in that it is upholding the ethical principles of fairness which it has adopted for itself.
6. A. C. Doyle, "Silver Blaze, "in The Adventures and the Memoirs of Sherlock Holmes, E. Glinert, ed. (New York Penguin Group, 2001).
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10. ACA § 4303.
11. See Koh and Sebelius, supra note 10.
12. J. Leezer, A. Long, and C. Bass, "Understanding the Impact of Health Care Reform on Wellness Promotion, "The Slant 26, (October 2010): 1-6, at 1, available at (last visited July 7, 2011).
13. PBS, "Issue Clash, "available at (last visited July 1, 2011).
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24. See Thomas, supra note 31, at 518.
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28. L. L. Berry, A. M. Mirabito, and W. B. Baun, "What's the Hard Return on Employee Wellness Programs?" Harvard Business Review 88, no. 12 (December 2010): 104-112.
29. U.S. Equal Employment Opportunity Commission, Fiscal Year 2012 Congressional Budget Justification, available at (last visited July 1, 2011).
30. M. M. Mello and M. B. Rosenthal, "Wellness Programs and Lifestyle Discrimination - The Legal Limits, "New England Journal of Medicine 359, no. 2 (2008): 192-199, at 198, available at (last visited July 1, 2011).
31. See Rosenbaum, supra note 34, at 11.
32. E. Pendo, "Working Sick: Lessons of Chronic Illness for Health Care Reform, "Yale Journal of Health Policy, Law, and Ethics 9, no. 2 (2009): 453-5470, available at (last visited July 14, 2011).
33. See Rosenbaum, supra note 34, at 11 (citation omitted).
34. See Mello and Rosenthal M. A. Rothstein and H. L. Harrell, "Health Risk Reduction Programs in Employer-Sponsored Health Plans: Part II-Law and Ethics, "Journal of Occupational and Environmental Medicine 51, no. 8 (2010): 951-957; A. E. Dow, "Genomics Law Report, Genetic Exceptionalism and the Precautionary Principle, "available at (last visited July 1, 2011).
35. T. Underwood, "Front-Line Managers Are Key to Wellness Program Participation, "The Health Care Blog, available at (last visited July 1, 2011).
36. K. Parker, "The Harried Life of the Working Mother, "The Working Poor Families Project Policy, available at (last visited July 1, 2011).
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39. J. D. Thomas, "Mandatory Wellness Programs: A Plan to Reduce Health Care Costs or a Subterfuge to Discriminate against Overweight Employees?" Howard Law Journal 53, no. 2 (2010): 513-555, at 513.
40. See Kottke et al., supra note 28.
41. See Thomas, supra note 53.
42. Leade Health, "The Business Case for Weight/Obesity Management Using Health Coaching Interventions, "available at (last visited July 14, 2011).
43. The Perfect Labor Storm, "Workforce Indicators, Statistics, Facts and Trends, "available at (last visited July 1, 2011).
44. Center for Disease Control and Prevention (CDC), "Genomics and Health, "available at (last visited July 1, 2011).
45. A. Must et al., "Improving Coordination of Legal-Based Efforts across Jurisdictions and Sectors for Obesity Prevention and Control, "Journal of Law, Medicine & Ethics 37, no. 2 (2009): 90-98, at 92.
46. Cong. Research Serv., H.R. 3590, Patient Protection and Affordable Care Act (2010) available at (last visited July 1, 2011) (Bill "Provides that nothing in this Act shall be construed to require that an individual terminate coverage under a group health plan or health insurance coverage in which such individual was enrolled on the date of enactment of this Act."); U. E. Reinhardt, "Wrapping Your Head around the Health Bill, "New York Times, March 24, 2010, available at (last visited July 1, 2011).
47. A. Monahan and D. Schwarcz, "Will Employers Undermine Health Care Reform by Dumping Sick Employees?" Virginia Law Review 97, no. 1 (2011): 125-198 (presenting their empirical research on the possible effect of wellness programs to dump patients into public exchanges).
48. ACA § 4303.
49. See Mello and Rosenthal, supra note 43, at 197-198.
50. Americans with Disabilities Act of 1990 (ADA), 42 U.S.C. § 112(d) (1990); Health Insurance Portability and Accountability Act (HIPAA), 42 U.S.C § 300 gg-41 (1996). For an overview of ACA's amendments to HIPAA, see H. Rowen, "How the Federal Healthcare Reform Law Will Affect Healthcare Premiums, Healthcare Benefits and the Market for Coverage, "Health Lawyer 23, no. 4 (2011): 55-60, at 56.
51. See Mello and Rosenthal, supra note 43, at 197.
52. See Berry et al., supra note 40.
53. B. A. Ormond, B. C. Spillman, T. A. Waidmann, K. J. Caswell, and B. Tereschenko, "Potential National and State Medical Care Savings from Primary Disease Prevention, "American Journal of Public Health 10, no. 1 (2011): 157-164, available at (last visited July 1, 2011).
54. American College of Occupational and Environmental Medicine, "Healthy Workforce/Healthy Economy: The Role of Health, Productivity, and Disability Management in Addressing the Nation's Health Care Crisis: Why an Emphasis on the Health of the Workforce Is Vital to the Health of the Economy, "Journal of Occupational and Environmental Medicine 51, no. 1 (2009): 114-119, at 115, available at (last visited July 1, 2011).
55. ACA § 2801©(1).
56. According to the Congressional Budget Office § 1001 of ACA creates or modifies five laws related to Wellness programs. They are: § 2717 in the Public Health Services Act (PHSA) concerning reporting requirements for group health plans; PPACA § 1201, which creates a new § 2705 in the PHSA prohibiting discrimination on the basis of health status; PPACA § 4303, amended by § 10404 of P.L. 111-152, creates sections in the PHSA, including section 399MM, which provides for Centers for Disease Control (CDC) grants for employer-based wellness programs; and PPACA § 10408, concerning workplace wellness grants Congressional Research Services, "Wellness Programs: Selected Legal Issues, "available at (last visited July 1, 2011).
57. ACA §§ 399MM-1, -3.
58. Employee Retirement Income Security Act of 1974 (ERISA), 29 U.S.C. §§ 1001-1461, 1181 (1974); W. K. Mariner, "Health Reform: What's Insurance Got to Do with It? Recognizing Health Insurance as a Separate Species of Insurance, "American Journal of Law & Medicine 36, nos. 2 & 3 (2010): 436-451, at 442.
59. L. C. Bridgeford, "Employee Benefit News, "available at (last visited July 1, 2011).
60. Paychex, "Company Information, "available at (last visited July 1, 2011) ("Paychex, Inc. is a recognized leader in the payroll and human resource industry, serving over a half million businesses nationwide").
61. Muneris, "PPACA Workplace Wellness Programs, "available at (last visited July 1, 2011) (note, this quote refers to the bill as PPACA).
62. The changes to ERISA essentially remove the conflicts with existing provisions created by the amendments to HIPAA and the ADA.
63. ACA, "Technical Assistance for Employer-Based Wellness Programs, "§ 399MM.
64. Health and Human Services. "Affordable Care Act Implementation FAQs- Set 5, "The Center for Consumer Information & Insurance Oversight, available at (last visited July 7, 2011); Department of Labor, "Compliance Assistance, "Employee Benefits Security Administration, available at (last visited July 10, 2011).
65. Department of Labor, "FAQs about Affordable Care Act Implementation Part V and Mental Health Parity Implementation, "December 22, 2010, Employee Benefits Security Administration, available at (last visited July 7, 2011).
66. HIPAA § 300 gg-41. For an overview of ACA's amendments to HIPAA, see H. Rowen, "How the Federal Healthcare Reform Law Will Affect Healthcare Premiums, Healthcare Benefits and the Market for Coverage, "Health Lawyer 23, no. 4 (2011): 55-60, at 56.
67. ADA § 112(d).
68. ERISA § 1002.
69. See supra at 475.
70. See infra at 477-478.
71. ACA § 4303.
72. U.S. Equal Employment Opportunity Commission, available at (last visited July 1, 2011).
73. HIPAA §300 gg-41; Americans with Disabilities Act of 1990, 42 U.S.C. § 112(d), amended by 47 U.S.C. § 255 (2008); ERISA §§ 1181-1183.
74. See infra at 479-481.
75. The Department of Labor has provided guidance to its field officers to determine whether an employer's wellness program is regulated under ERISA. The determining factors seem to be whether or not the program is part of a health insurance program offered by a covered entity. See Field Assistance Bulletin No. 2008-02 (February 14, 2008), available at (last visited July 1, 2011).
76. These regulations were jointly issued by the Departments of Labor, the Treasury, and Health and Human Services. See 29 CFR 2590.702.
77. HIPAA § 300 gg-41; see Rosenbaum, supra note 34, at 110.
78. See Mello and Rosenthal, supra note 43, at 198.
79. See Mello and Rosenthal, supra note 43, at 198.
80. See Rosenbaum, supra note 34, at 111.
81. Nondiscrimination and Wellness Programs in Health Coverage in the Group Market, 71 Fed. Reg. 75.013, 75, 021 (Dec. 13, 2006) at; Requirements for the Group Health Insurance Market, 45 C.F.R. § 146.121(b)(2)(i)(B) (2010) ("[A] restriction on a benefit or benefits must apply uniformly to all similarly situation individuals and must not be directed at individual participants or beneficiaries based on any health factor of the participants or beneficiaries.").
82. 45 C.F.R. § 146.121(f).
83. 29 C.F.R. § 1635.8.
84. Nondiscrimination and Wellness Programs in Health Coverage in the Group Market, 71 Fed. Reg. at 75015, available at (last visited May 22, 2011).
85. D. Rubenstein, "The Emergence of Mandatory Wellness Programs in the United States: Welcoming, or Worrisome?" Journal of Health Care Law and Policy 12, no. 1 (2009): 99-118, at 108.
86. Employers have become interested in lowering costs both for health care and from absenteeism by directly trying to influence the health of their employees. C.-W. Pai, J. Mullin, G. M. Payne, J. Love, G. O'Connell, and D. W. Edington, "Factors Associated with Incidental Sickness Absence among Employees in One Health Care System, "American Journal of Health Promotion 24, no. 1 (2009): 37-48; R. Goetzel, R. Ozminkowski, J. Bruno, K. Rutter, I. Fikry, and S. Wang, "The Long-Term Impact of Johnson & Johnson's Health & Wellness Program on Employee Health Risks, "Journal of Occupational and Environmental Medicine 44, no. 5 (2002): 417-424 (reporting "significant risk reduction in 8 of 13 risk categories examined for all employees who [enrolled in a risk reduction program who] participated in two health risk assessments over an average of 2 3/4 years").
87. I. Schuman, "Healthcare Employment Counsel, EBSA Clarifies GINA Provisions for Insurance Providers and Group Health Plans, "available at (last visited July 1, 2011).
88. 42 U.S.C. §12112(d)(4)(A)(1994); 29 C.F.R. § 1630.14© (1998).
89. EEOC Enforcement Guidance on Disability-Related Inquiries and Medical Examinations of Employees Under the Americans with Disabilities Act (ADA), available at (last visited July 1, 2011). Accompanying the memo is a state of acknowledgement that the ADA was amended in 2008 and that the Office of Legal Counsel would be reviewing all previously issued Guidance material. However, it is unlikely that these changes will change the prohibitions on when employers can ask about disabilities or who they can ask. As the EEOC explains, the changes primarily concern "the definition of the term 'disability' by rejecting the holdings in several Supreme Court decisions and portions of EEOC's ADA regulations. The effect of these changes is to make it easier for an individual seeking protection under the ADA to establish that he or she has a disability within the meaning of the ADA, "available at (last visited July 1, 2011).
90. Seff v. Broward Cnty, No. 10-61437, 2011 WL 1522558, at *4-5 (S.D. Fla. April 11, 2011).
91. M. A. Rothstein, "Genetic Stalking and Voyeurism: A New Challenge to Privacy, "University of Kansas Law Review 57, no. 3 (2010): 539-577, at 562.
92. 29 C.R.F. § 1635.8.
93. S. Hoffman, "The Importance of Immutability in Employment Discrimination Law, "William & Mary Law Review 52, no. 4 (2011): 1483-1546, at 1492 (pointing out that the courts have not heard any GINA discrimination cases).
94. Seff, 2011 WL 1522558, at *4-5.
95. Hope Health, New Federal Regulations May Change Your Wellness Program: What You Can Ask and What You Can't, 2010, available at (last visited July 1, 2011). For the text of the rules see, (last visited July 1, 2011).
96. L. B. Andrews, M. J. Mehlman, and M. A. Rothstein, Genetics: Ethics, Law and Policy, 3rd ed. (St. Paul, MN Thomson/West, 2010) at 9 (citing F. S. Collins and V. A. McKusick, "Implications for the Human Genome Project for Medical Science, "JAMA 285, no. 5 [2001]: 540-544).
97. See Human Genome Project Info., "Facts About Genome Sequencing, "available at (last visited July 1, 2011).
98. N. Bakalar, "New DNA Mapping Project to Trace Genetic Ills, "National Geographic Magazine (October 26 2005), available at (last visited July 1, 2011).
99. See Rothstein, supra note 135, at 563.
100. GINA, available at (last visited July 1, 2011).
101. CDC, "Family Health, "available at (last visited July 1, 2011).
102. J. Tsai, "Family Medical Info Off Limits for Insurers: Many Employers Will Be Forced to Rethink Health, Wellness Plans, "Dallas Business Journal (November 2009), available at (last visited July 1, 2011).
103. See Berry et al. supra note 40, at 109.
104. Department of Health and Human Services, "Surgeon General's Family Health History Initiative, "available at (last visited July 10, 2011); Centers for Disease Control and Prevention, "Family Reunions and Family Health History (2010), available at (last visited July 10, 2011).
105. See Hope Health, supra note 144.
106. See T. J. Parisi, "The Onus Is on You: Wellness Plans and Other Strategies Being Employed for Patients to Take Ownership of Their Health, "Quinnipiac Health Law Journal 13, no. 2 (2010): 243-278.
107. Rodrigues v. Scotts Co., No. 07-10104-GAO, 2008 WL 251971, at 1-4 (D. Mass. Jan. 30, 2008); M. Conlin, "Get Healthy-Or Else: Inside One Company's All-Out Attack on Medical Costs, "Bloomberg Businessweek (February 26, 2007), available at (last visited July 1, 2011). See also Rubenstein, supra note 116, at 113. For a discussion of how employer oversight of out-of-work activities are evidence of an increased emphasis on personal responsibility see E. Blacksher, "Health Reform and Health Equity: Sharing Responsibility for Health in the United States, "Hofstra Law Review 39 (2011): 41-58, at 47-54. For a fuller discussion of state laws which can help or hinder wellness programs, see generally, A. Hendrix and J. Buck, "Employer-Sponsored Wellness Programs: Should Your Employer Be the Boss of More Than Your Work, "Southwestern Law Review 38, no. 3 (2009): 465-501 and J. Lipps, State Lifestyle Statutes and the Blogosphere: Autonomy for Private Employees in the Internet Age, "Ohio State Law Journal 72, no. 3 (2011): 645-685.
108. J. Pierotti, "The 'Bottom Line': A Smokescreen for the Reality That Anti-Tobacco Employment Practices Are Hazardous to Minority Health and Equality, "Journal of Contemporary Health Law and Policy 26, no. 2 (2010): 441-470, at 441.
109. 29 C.F.R. §§ 1635.8.
110. United States Equal Opportunity Employment Commission, "Questions and Answers for Small Businesses: EEOL Final Rule on Title II of the Genetic Information Non-Discrimination Act of 2008, "available at (last visited July 1, 2011).
111. S. Smithey and T. Stanton, "Do Your Health and Wellness Plans Violate GINA?" available at (last visited July 1, 2011).
112. V. Brower, "Epigenetics: Unraveling the Cancer Code, "Nature 471 (March 23, 2011): S12-S13, available at ("If the genetic code is the hardware for life, the epigenetic code is software that determines how the hardware behaves - and as such it can be rewritten.").
113. See CDC, supra note 59.
114. See Hoffman, supra note 142, at 1499.