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Expansion of genetic privacy

Tucked away in the hundred-plus pages of a new federal privacy rule that took effect last month is expanded federal protection of our right to privacy in our genetic information that may help ease the minds of our cousins when we ask them to take a DNA test to help our genealogical research.

The rule was adopted by the U.S. Department of Health and Human Services on 25 January 2013, and took effect 26 March 2013.1 It’s part of its responsibilities under the Health Insurance Portability and Accountability Act (HIPAA), and it has the effect of broadening the reach of the Genetic Information Nondiscrimination Act of 2008 (GINA).

GINA, you may recall, provides that our genetic information can’t be used to discriminate against us in employment or in health insurance. We can’t be denied a job or treated differently from co-workers just because a genetic test shows we may have a higher than average risk of developing heart disease,2 and a health insurance company can’t charge us more money because a DNA test shows that we carry a gene that increases our risk of, say, breast or colon cancer.3

Under GINA, however, not all types of health plans were covered. And HIPAA does reach these additional types of plans:

(1) Long-term care policies (excluding nursing home fixed indemnity policies); (2) employee welfare benefit plans or other arrangements that are established or maintained for the purpose of offering or providing health benefits to the employees of two or more employers (to the extent that they are not group health plans or health insurance issuers); (3) high risk pools that are mechanisms established under State law to provide health insurance coverage or comparable coverage to eligible individuals; (4) certain public benefit programs, such as Medicare Part A and B, Medicaid, the military and veterans’ health care programs, the Indian Health Service program, and others; as well as (5) any other individual or group plan, or combination of individual or group plans that provides or pays for the cost of medical care… This last category includes, for example, certain “excepted benefits” plans …, such as limited scope dental or vision benefits plans.4

Under the new rule, all of those plans — except for long-term care policies5 — are now included: none of them will be allowed to make decisions about whether we can enroll or how much we will pay based on any genetic test we’ve taken or any other genetic information.

And the very definition of “genetic information” has been broadened and clarified as well. Clearly, genetic information includes any genetic testing we’ve done. But it also includes any genetic tests taken by any of our family members and information about “diseases or disorders manifested in an individual’s family members (i.e., family health history).”6

For purposes of the rule, family members include:

(2) Any … person who is a first degree, second-degree, third-degree, or fourth-degree relative of the individual or of a dependent of the individual. Relatives by affinity (such as by marriage or adoption) are treated the same as relatives by consanguinity (that is, relatives who share a common biological ancestor). In determining the degree of the relationship, relatives by less than full consanguinity (such as half-siblings, who share only one parent) are treated the same as relatives by full consanguinity (such as siblings who share both parents).
(i) First-degree relatives include parents, spouses, siblings, and children.
(ii) Second-degree relatives include grandparents, grandchildren, aunts, uncles, nephews, and nieces.
(iii) Third-degree relatives include great-grandparents, great-grandchildren, great aunts, great uncles, and first cousins.
(iv) Fourth-degree relatives include great-great grandparents, great-great grandchildren, and children of first cousins.7

Bottom line here: when that cousin balks at DNA testing for genealogy because of fear that it may be used against him or a family member, the new rule provides some help. An employer or a health plan can’t ask about any testing we may have done, can’t make us provide access to any results we may have, can’t make us take a genetic test, can’t refuse us a job or coverage because of a genetic test, and can’t even ask us if somebody in our family has ever taken a genetic test.

So… cousin of mine… about that test I want you to take now that Family Tree DNA has that National DNA Day sale going on…


  1. “Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules,” 78 Fed. Reg. 5565 (25 Jan 2013), PDF version, U.S. Government Printing Office ( : accessed 20 Apr 2013).
  2. See “Genetic Information Discrimination,” U.S. Equal Employment Opportunity Commission ( : accessed 20 Apr 2013).
  3. See “The Genetic Information Nondiscrimination Act (GINA),” National Institues of Health, U.S. Department of Health and Human Services ( : accessed 20 Apr 2013).
  4. “Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules…,” 78 Fed. Reg. at 5659.
  5. The rule puts long-term insurers on notice that they may be included in the future and are excluded now only because there’s not enough information available to say whether the policies can be financially viable if they can’t collect genetic information. See ibid., 78 Fed. Reg. at 5661.
  6. Ibid., 78 Fed. Reg. at 5661-5662.
  7. Ibid., 78 Fed. Reg. at 5688.
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