Genetic Privacy Laws and Patients' Fear of Discrimination by Health Insurers: The View from Genetic Counselors

For descriptions and summaries of genetic discrimination legislation, see Rothenberg K. , “Genetic Information and Health Insurance: State Legislative Approaches,” Journal of Law, Medicine & Ethics, 23 (1995): 312–19; Davis H.R. and Mitrius J.V. , “Recent Legislation on Genetics and Insurance,” Jurimetrics Journal, 37 (1996): 69; Yesley M.S. , “Genetic Privacy, Discrimination, and Social Policy: Challenges and Dilemmas,” Microbial and Comparative Genomics, 2 (1997): 19; and Mulholland W. and Jaeger A. , “Genetic Privacy and Discrimination: A Comprehensive Survey of State Legislation,” Jurimetrics Journal, 39 (1999): 1–10.

Colby J. , “An Analysis of Genetic Discrimination Legislation Proposed by the 105th Congress,” American Journal of Law & Medicine, 24 (1998): 443.

Health Insurance Portability and Accountability Act, Pub. L. No. 104-191, 110 Stat. 1936 (1996).

Billings P.R. , “Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics, 50 (1992): 476–82; Alper J. , “Genetic Discrimination and Screening for Hemochromatosis,” Journal of Public Health Policy, 15 (1994): 345–58; Hudson K.L. , “Genetic Discrimination and Health Insurance: An Urgent Need for Reform,” Science, 270 (1995): 391–93; and Geller L. N. , “Individual, Family, and Societal Dimensions of Genetic Discrimination: A Case Study Analysis,” Science and Engineering Ethics, 2 (1996): 71.

Lapham E.V. Kozma C. and Weiss J. , “Genetic Discrimination: Perspectives of Consumers,” Science, 274 (1996): 621–24; and Department of Health and Human Services, Health Insurance in the Age of Genetics, July 1997.

Hall M.A. and Rich S.S. , “The Impact on Genetic Discrimination of Laws Restricting Health Insurers' Use of Genetic Information,” American Journal of Human Genetics, 66 (2000): 293–307.

See also Wingrove K.J. , “Experiences and Attitudes Concerning Genetic Testing and Insurance in a Colorado Population: A Survey of Families Diagnosed with Fragile X Syndrome,” American Journal of Medical Genetics, 64 (1996): 378–81 (reporting that 44 percent of families with positive (adverse) test results believe it will be more difficult to obtain insurance because of the testing, 31 percent are afraid to change jobs because of fear of losing health insurance, 24 percent of families have “extreme” worry over insurance issues and another 42 percent have “moderately severe” worry); and Lynch H.T. , “A Descriptive Study of BRCA1 Testing and Reactions to Disclosure of Test Results,” Cancer, 79 (1997): 2219–28 (reporting that 25 percent of patients receiving predictive genetic testing for cancer were concerned about insurance discrimination).

Supporting the latter view, see Bernhardt B.A. , “Toward a Model Informed Consent Process for BRCA1 Testing: A Qualitative Assessment of Women's Attitudes,” Journal of Genetic Counseling, 6 (1997): 207–22 at 215 (only three of about 75 women recruited for focus groups about breast cancer spontaneously raised potential insurance discrimination as a concern or risk of genetic testing).

In particular, a 1998 Parade Magazine article was mentioned by several counselors as a source of cancer patients' information and concern. For additional discussion, see Reilly P.R. , Genetic Discrimination, American Enterprise Institute (1997) (“hundreds of popular articles warn of genetic discrimination, relying at best on flimsy evidence”).

This is confirmed by a 1997 mail survey of 272 genetic counselors, which found that counselors who see mostly adult patients view their patients as much more concerned about privacy and discrimination issues and are much more likely to discuss these concerns with their patients, than are counselors who see mostly pediatric or prenatal patients. Hoyle C.L. , Discussion of Genetic Discrimination Issues by Genetic Counselors and Their Clients, University of Cincinnati, Department of Pediatrics, Genetic Counseling Program (1997).

See Bernhardt , supra note 9; Reilly P.R. Boshar M.F. and Holtzman S.H. , “Ethical Issues in Genetic Research: Disclosure and Informed Consent,” Nature Genetics, 15 (1997): 301–05; National Society of Genetic Counselors, “Predisposition Genetic Testing for Late-Onset Disorders in Adults,” JAMA, 278 (1997): 1217–20; Geller G. , “Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent,” JAMA, 277 (1997): 1467–74; American Society of Human Genetics, “Statement on Informed Consent for Genetic Research,” American Journal of Human Genetics, 59 (1996): 471–74; and American Society of Clinical Oncology, “Genetic Testing for Cancer Susceptibility,” Journal of Clinical Oncology 17 (1996): 1730–36.

Another similar study found six of seven informed consent forms used by the leading breast cancer testing labs warn about insurance risks. Durfy S.J. Buchanan T.E. and Burke W , “Testing for Inherited Susceptibility to Breast Cancer: A Survey of Informed Consent Forms for BRCA1 and BRCA2 Mutation Testing,” American Journal of Medical Genetics, 75 (1998): 82–7.

Baty B.J. , “BRCA1 Testing: Genetic Counseling Protocol Development and Counseling Issues,” Journal of Genetic Counseling, 6 (1997): 223–44 at 229. A group of counselors at a Utah clinic typically discuss the following list of topics in relation to testing for cancer: • the risk of cancellation of current health, life or disability insurance; • inability to obtain insurance in the future; • risks may vary depending on type of policy (large group, small group, individual); • testing may not change risk since risks due to family his tory already exist; • the magnitude of risks is unknown; • secrecy measures are taken, but insurers can still get in formation by asking directly about genetic tests or if the information is given to a physician who puts it in the medical record; • a negative test result may improve the ability to get or keep insurance, but a negative result can pose problems for a relative. • if employers learn of results, they might be concerned about future job performance or medical costs borne by their health insurance.

For instance, Medicaid patients and those on other government insurance programs, such as military insurance, have much less reason for concern, as discussed more below.

A good description of the values and culture of genetic counseling can be found in Biesecker B.B. , “Future Directions in Genetic Counseling: Practice and Ethical Considerations,” Kennedy Institute Ethics Journal, 8 (1998): 145–60.

This is confirmed by a 1997 mail survey of 272 genetic counselors, which found that only 8 percent of all counselors, and 0 percent of those who see mostly adult patients, reassure patients about privacy and discrimination concerns. See Hoyle , supra note 11.

One published example can be found at Baty , supra note 14.

Only one of 10 clinics we spoke to about this declined to follow this practice.

For discussions debating the pros and cons, see Mehlman M.J. , “The Need for Anonymous Genetic Counseling and Testing,” American Journal of Human Genetics, 58 (1996): 393–97; Uhlmann W. , “Questioning the Need for Anonymous Genetic Counseling and Testing,” American Journal of Human Genetics, 59 (1996): 968–70; and Clayton E.W. , “Informed Consent and Genetic Research,” in Rothstein M. A. , ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 127–36.

See also Department of Health and Human Services, supra note 5 (at the National Institutes of Health, nearly a third of people offered a breast cancer test decline to take it, and the “overwhelming majority” of these cite concerns about privacy and health insurance discrimination as the reason); Lerman C. , “BRCA1 Testing in Families with Hereditary Breast-Ovarian Cancer: A Prospective Study of Patient Decision Making and Outcomes,” JAMA, 275 (1996): 1885–92 (16 percent of 192 people with family history of breast cancer are “very worried” about losing insurance and 18 percent are “somewhat worried”); and Lynch H.T. , “An Update on DNA-Based BRCA1/BRCA2 Genetic Counseling in Hereditary Breast Cancer,” Cancer Genetics and Cytogenetics, 109 (1999): 91–98 (the most common reason, at 37 percent, given by patients for declining predictive testing for cancer is fear of insurance discrimination). Studies like these are seriously flawed, however, because the survey format strongly encourages these answers to speculative questions about imagined behaviors and motivations, rather than testing actual behavior in response to different circumstances. This has been demonstrated in the context of testing for the AIDS virus: See Burris S. , “Driving the Epidemic Underground: A New Look at Law and the Social Risk of HIV Testing,” AIDS and Public Policy Journal, 12 (1997) 66–78; and Burris S. , “Law and the Social Risk of Health Care: Lessons from HIV Testing,” Albany Law Review, 61 (1998) 831–95. Thus, although numerous studies had suggested that people at risk for AIDS would greatly decrease their rate of testing if confidentiality protections were reduced, when mandatory reporting laws were implemented requiring test results to be sent to public health officials, actual testing patterns did not decline: See Nakashima A. , “Effect of HIV Reporting by Name on Use of HIV Testing in Publicly Funded Counseling and Testing Programs,” JAMA, 280 (1998): 1421. However, other researchers found that anonymous testing leads to earlier detection and medical intervention: See Bindman A. , “Multistage Evaluation of Anonymous HIV Testing and Access to Medical Care,” JAMA, 280 (1998): 1416.

See also Lapham , supra note 5 (only 9 percent of 332 people in genetic support groups said, when prompted, that they or a family member have refused genetic testing for “fear of your insurance coverage being dropped”); Lerman , id. (in a study of families with breast cancer history, perceived importance of the limitations and risks of genetic testing, including potential insurance discrimination, did not influence desire to have genetic testing); Lynch , id. (describes a patient “who was extremely concerned about the possibility of insurance discrimination” but agreed to cancer testing anyway after learning about confidentiality safeguards “because she was so eager to receive her results.”)

See also Lerman , supra note 21 (in a study of families with breast cancer history, lacking health insurance was highly predictive of not wanting genetic testing, possibly because of the costs of follow-up treatment); Chaliki H. , “Women's Receptivity to Testing for a Genetic Susceptibility to Breast Cancer,” American Journal of Public Health, 85 (1995): 1133 (expressed willingness among general population to have breast cancer genetic test drops one-third to one-half when told that the cost of the test is more than $25); Rowley P.T. Loader S. and Kaplan R.M. , “Prenatal Screening for Cystic Fibrosis Carriers: An Economic Evaluation,” American Journal of Human Genetics, 63 (1998): 1160–74 (77 percent of the general population would not be willing to pay more than $25 for cystic fibrosis screening; only 6 percent would be willing to pay more than $50).

A good discussion of these issues relating to cancer testing can be found in Baty , supra note 14. For discussions relating to Huntington's disease, see Codori A.M. and Brandt J. , “Psychological Costs and Benefits of Predictive Testing for Huntington's Disease,” American Journal of Medical Genetics, 54 (1994): 174–84; Quaid K. and Morris M. , “Reluctance to Undergo Predictive Testing: The Case of Huntington's Disease,” American Journal of Medical Genetics, 45 (1993): 41–45; Wiggins S. , “The Psychological Consequences of Predictive Testing for Huntington's Disease,” N. Engl. J. Med., 327 (1992): 1401–05. See also Bernhardt , supra note 9 (only three of about 75 women recruited for focus groups about breast cancer spontaneously raised potential insurance discrimination as a concern or risk of genetic testing); Lerman , supra note 21 (in a study of people with family history of cancer, concerns over insurance discrimination ranked no higher than four other categories of concerns, including whether the genetic test provides accurate and useful information and the psychological impact it might have on subjects or their family members); Uhlmann , supra note 20 (people with family history of Huntington's disease ranked potential loss of health insurance as third in a list of 17 possible reasons to decline genetic testing).

See Clayton , supra note 20.

Wertz D.C. , “How Many People Seek Genetic Testing for Cystic Fibrosis, BRCA1, and Huntington Disease?,” Gene Letter (May 1997), (http://www.geneletter.org/archives/testuptakes.html>.

See Hall and Rich , supra note 6.

Philip Reilly observes that similar attitudes prevail with respect to HIPAA as well. See Reilly , supra note 10.

The Ohio statute has since been made permanent, but in theory any of these laws could be repealed, which would open the question of whether previously acquired information would still be protected. Nothing short of a constitutional amendment would appear to address this concern.

Similarly, a 1997 mail survey of 272 genetic counselors found that 85 percent of those who see mostly adult patients mention state or federal protective laws to their patients. See Hoyle , supra note 11.

See Burris , supra note 21 at 66 and 72.

See Burris , supra note 21.

See Alper , supra note 4.

See Burris , supra note 21, AIDS and Public Policy Journal, at 75.

Accord, see Reilly , supra note 10.