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Abstract

The Genetic Information Nondiscrimination Act (GINA) was enacted to assure individuals covered by group health plans that their genetic information would not be used for underwriting and other improper purposes. Although there is appropriate support for GINA in the benefits community, it appears that interim regulations issued by the federal government extend well beyond GINA’s statutory provisions and original intent. In particular, there is concern from some wellness advocates that GINA regulations will prevent health coaches and wellness program professionals from obtaining family medical history information. Family medical history information is critically important to disease prevention, and by preventing access to this information, the concern among many in the benefits community is that the rules may do more harm than good.

Keywords

genetic information nondiscrimination health and wellness health assessment family medical history

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References

Title II of the Genetic Information Nondiscrimination Act (GINA), Section 202, contains an exception for wellness programs sponsored by employers, employment agencies, and labor organizations, but this exception does not extend to group health plans or health insurers.

74 Fed. Reg. 51664.

Pub. L. No. 110-233, 122 Stat. 881 (2008).

S. Res. 48, 110th Cong., at 8 (2007).

Pub. L. No. 92-294, 86 Stat. 136 (1972).

See 29 C.F.R. 2590 701-3(b)(6)(i); Employee Retirement Income Security Act Section 701(b)(1)(B).

Title I, GINA, Section 101(d).

Proposed 29 C.F.R. 2590.702-1(d)(1)(ii)(A) and (B).

Ibid.

10.

See DMAA: The Care Continuum Alliance, www.dmaa.org.

11.

S. Rep. No. 48, 110th Cong., 1st Sess., at 20 (2007).

12.

See www.businessgrouphealth.org; December 9, 2009, letter to the U.S. Department of Labor, Employee Benefits Security Administration.

13.

Optum Health. (2009). White paper: Best practices for creating successful wellness programs . Golden Valley, MN: Author.

14.

Ibid. Results from a 2007 Uniprise client study where employer groups representing nearly 40,000 members were analyzed and compared to a book of business results for health assessment and online health coach completion statistics.

15.

See http://www.cdc.gov/genomics/famhistory/index.htm (December 2009).

16.

Optum Health. (2009). White paper: Best practices for creating successful wellness programs . Golden Valley, MN: Author.

17.

Clark, C. ( 2005, November). Relations between social support and physical health. Rochester, NY: Rochester Institute of Technology.

18.

See rex.nci.nih.gov/NCI_Pub_Interface/Smoking_Facts/ about.html.

19.

Keeler, S. ( 2005, August 15). Teen obesity and family environment . Retrieved December 17, 2009, from www.medicalnewstoday.com/articles/29129.php.

20.

Centers for Disease Control and Prevention. (2009). Chronic diseases: The power to prevent, the call to control. Atlanta, GA: National Center for Chronic Disease Prevention and Health Promotion and Improving Health and Quality of Life for All People.

21.

UnitedHealthcare. (2009). Consumerism in health: Insights from experience. Minnetonka, MN: Author.

22.

Nondiscrimination and Wellness Programs in Health Coverage in the Group Market regulations, 71 Fed. Reg. 75014 (December 13, 2006).

23.

See Employee Benefits Research Institute. (2005). Fundamentals of employee benefit plan programs. Washington, DC: Author. The institute found that 93% of large employers have wellness programs in 2001, up 88% from 1995.

24.

See GINA, Title II, Sections 202 (b), 203(b), and 204(b).

25.

74 Fed. Reg. at 51669 (October 7, 2009).

26.

See proposed Equal Employment Opportunity Commission regulations, 29 C.F.R. 1635.8 (74 Fed. Reg. 9056 at 9068).

27.

29 U.S.C. § 2613.

Prognosis Negative? GINA’s Interim Incentives Ruling a Concern for Wellness Programs

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