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Genetics and Insurance: Accessing and Using Private Information*

Published online by Cambridge University Press:  13 January 2009

A. M. Capron
Law, University of Southern California


Is information about a person's genome, whether derived from the analysis of DNA or otherwise, protected by the right to privacy? If it is, why and in what manner? It often appears that some people believe that the answer to this question is to be found in molecular genetics itself. They point to the rapid progress being made in basic and applied aspects of this field of biology; this progress has remarkably increased what is known about human genetics. Since knowledge of a particular person's genetic makeup entails a potential intrusion into that person's most private realms and exposes him or her to dire results if revealed to others, they argue, the law needs to protect “genetic privacy.” There is nothing inherently wrong with this account, but it certainly presupposes that we know—and agree about—what it means to protect privacy and, indeed, what interests are implicated in the concept and why they matter. Rather than make this assumption, in this essay I first elaborate a concept of privacy before turning to the potential privacy implications that arise at the intersection of human genetics and the field of insurance. I argue that the core value here is self-determination broadly conceived—that control over one's genetic information may be important for achieving self-determination—but that at least in the context of contracts for life insurance, we should be reluctant to recognize “rights” that would permanently preclude the use of genetic data by insurers.

Research Article
Copyright © Social Philosophy and Policy Foundation 2000

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1 Pennock, J. Roland and Chapman, John W., “Preface,” in Pennock, and Chapman, , eds., NOMOS XIII: Privacy (New York: Atherton Press, 1971), vii.Google Scholar

2 Beyond the protection of property, the interest in not being interfered with in a personal sense was embodied in the tort of trespass vi et armis and other doctrines that protected people's physical well-being.

3 Beardsley, Elizabeth L., “Privacy and Selective Disclosure,”Google Scholar in Pennock, and Chapman, , eds., Privacy, 56.Google Scholar

4 Blackball, Leslie J. et al. , “Ethnicity and Attitudes Toward Patient Autonomy,” Journal of the American Medical Association 274, no. 10 (09 13, 1995): 820–25.CrossRefGoogle Scholar

5 Frank, Gelya et al. , “A Discourse of Relationships in Bioethics: Patient Autonomy and End-of-Life Decision Making among Elderly Korean Americans,” Medical Anthropology Quarterly 12, no. 4 (12 1998): 403–23.CrossRefGoogle ScholarPubMed

6 The Patient Self-Determination Act requires that all hospitals, skilled nursing facilities, home health agencies, hospice programs, and HMOs that receive Medicare or Medicaid funding provide each patient at the time of entrance or enrollment with written information concerning:

(I) an individual's rights under State law … to make decisions concerning … medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives…, and

(II) the written policies of the provider or organization respecting the implementation of such rights.

42 U.S.C.A. sec. 1395cc(a)(1)(f)(1)(A) (West Supp. 1999). The organization must also document in each person's record whether that person has signed an advance directive. The act also requires that each state develop written descriptions of relevant law.

7 Freund, Paul A., “Privacy: One Concept or Many,”Google Scholar in Pennock, and Chapman, , eds., Privacy, 182.Google Scholar

8 Warren, Samuel D. and Brandeis, Louis D., “The Right to Privacy,” Harvard Law Review 4, no. 5 (12 1890): 193.CrossRefGoogle Scholar

9 Prosser, William L., “Privacy,” California Law Review 48, no. 3 (08 1960): 389CrossRefGoogle Scholar. I focus in what follows on the first three of these categories of the right to privacy because the fourth (commercial appropriation of a plaintiff's name or likeness), while not unrelated to the core concept of self-creation that I argue is protected by the common law (subject to constitutional limitations designed to avoid chilling press freedom), is not very germane to the underlying topic of private genetic information. Cases falling into Prosser's fourth category typically involve individuals who have cultivated media attention to many—perhaps all—aspects of their lives and who merely object to others exploiting, and perhaps diluting, the commercial value that can attach to such celebrity.

11 Ibid., quoting Cooley, Thomas McIntyre, A Treatise on the Law of Torts, or, the Wrongs Which Arise Independent of Contract, 2d ed. (Chicago: Callaghan and Company, 1888), 29.Google Scholar

12 The offense has to be more than a common annoyance of life, as a result either of its manner or its effect. For consideration of an offense's manner, see Fowler v. Southern Bell Telephone and Telegraph Co., 343 F.2d 150 (5th Cir. 1965)Google Scholar (wiretapping a phone conversation as opposed to merely overhearing a conversation at the next table in a restaurant). For consideration of an offense's effect, see Pinkerton National Detective Agency, Inc. v. Stevens, 108 Ga. App. 159, 132 S.E.2d 119 (1963)Google Scholar (ostentatious shadowing as opposed to mere observation on a public street).

13 Compare, in Restatement (Second) of Torts (1976)Google Scholar, sec. 577 (What Constitutes Publication) and sec. 559 (Defamatory Communication Defined) with sec. 652E (Publicity Placing Person in False Light).

14 Time v. Hill, 385 U.S. 374 (1967)Google Scholar. Actual events—the Hills being held prisoners in their own home by three escaped convicts—had been used by a writer in a novel, which was later made into a play. In an article about the play, Life magazine published photographs of the actors in the Hills' former home, which gave the photographs the appearance of reenacting actual events, when in fact both the novel and the play included some elements of fiction that the plaintiff claimed placed his conduct in a false light. The New York courts held the defendant liable to the plaintiff under a New York statute because of the false statements, but the U.S. Supreme Court held such misstatements to be privileged unless made recklessly or with knowledge of their falsity.

15 Gertz v. Robert Welch, Inc., 418 U.S. 323 (1974)Google Scholar. The Court's holding, that “so long as they do not impose liability without fault, the States may define for themselves the appropriate standard of liability for a publisher or broadcaster of defamatory falsehood injurious to a private individual” (ibid., at 347), provides a classic example of the half-empty/half-full phenomenon. Justice Byron White dissented on the grounds that rather than liberalizing the stringent requirements of New York Times Co. v. Sullivan, 376 U.S. 254 (1964)Google Scholar, and Time v. Hill, the majority had erected a new barrier—proof of negligence. In doing so, White claimed, the majority discarded “the contrary judgment arrived at in the 50 States that the reputation interest of the private citizen is deserving of considerably more protection,” namely, a legal rule that “put the risk of falsehood on the publisher where the victim is a private citizen and no grounds of special privilege are invoked.” Gertz, 418 U.S. at 389–90 (White, J., dissenting). Writing for the majority, Justice Lewis Powell responded that “[i]n light of the progressive extension of the knowing-or-reckless-falsity requirement…, one might have viewed today's decision allowing recovery under any standard save strict liability as a more generous accommodation of the state interest in comprehensive reputational injury to private individuals than the law presently affords.” Ibid., at 348.

16 Ibid., quoting Rosenblatt v. Baer, 383 U.S. 75, 92 (1966) (Stewart, J., concurring).Google Scholar

17 The Court limited recovery, however, to compensation for actual injury proven by the plaintiff, “at least when liability is not based on a snowing of knowledge of falsity or reckless disregard for the truth,” in which case presumed or punitive damages might be allowable. Gertz, 418 U.S. at 349.

18 See Cantrell v. Forest City Publishing Co., 419 U.S. 245 (1974).Google Scholar

19 Warren, and Brandeis, , “The Right to Privacy,” 216.Google Scholar

20 Restatement (Second) of Torts, sec. 652D. The American Law Institute (ALI) was established in 1923 to promote the clarification and simplification of the law and to encourage and carry on scholarly work. The Institute drafts various Restatements of the Law, Model Codes, and other proposals for law reform; once reviewed by its sixty-member Council and approved by its membership (which consists of up to three thousand elected lawyers, judges, and law professors), these products are then published. The Restatements, which attempt to clarify the law by setting forth the prevailing rules as derived from judicial decisions, were the ALI's first undertaking. Between 1923 and 1944, Restatements of the Law were developed for agency, conflict of laws, contracts, judgments, property, restitution, security, torts, and trusts. In 1952, the ALI started the Restatement (Second)—new editions of the original Restatements that updated them, reflected new analyses and concepts, and expanded upon the authorities used in reaching the conclusions set forth. A third round of editions is now underway in a number of fields, including torts.

21 Briscoe v. Reader's Digest, 483 P.2d 34, 39–40 (Cal. 1971).Google Scholar

22 Sidis v. F-R Publishing Co., 113 F.2d 806, 809 (2d Cir.), cert, denied, 311 U.S. 711 (1940)Google Scholar. William James Sidis, who had been a famous mathematics prodigy, sued The New Yorker for breaching his right of privacy by publishing a profile of him in which his early accomplishments were contrasted, twenty-seven years later, with his withdrawn and unaccomplished existence.

24 Time v. Hill, 385 U.S. at 383 n. 7. Since it was decided on false-light grounds, Time v. Hill left open the question of whether a state could constitutionally proscribe the truthful publication of very private matters.

25 Cox Broadcasting Corp. v. Cohn, 420 U.S. 469 (1975).Google Scholar

26 Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833, 851 (1992).Google Scholar

27 Griswold v. Connecticut, 381 U.S. 479, 484 (1965).Google Scholar

28 In Washington v. Glucksberg, 521 U.S. 702 (1997)Google Scholar, the Court upheld a Washington State statute that banned assisted suicide. The statute was challenged as it applied to mentally competent, terminally ill adults who wanted their physicians to be able to prescribe lethal medications with which they could take their own lives. The plaintiffs had succeeded in persuading the district and circuit courts that the statute deprived them of a liberty interest protected by the due process clause of the Fourteenth Amendment. The lower courts had not only relied on the Court's recognition in Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261 (1990)Google Scholar, of a constitutionally protected interest in refusing medical interventions even when doing so could lead to death; the plaintiffs also pointed to the category of “intimate and personal choices” that were held under Casey to be central to personal autonomy. In Glucksberg, the Court made clear that not all personal choices qualified for Fourteenth Amendment protection simply because the choice to abort a pregnancy was so protected. Chief Justice William Rehnquist, writing for the majority, found the bans on assisted suicide were “not innovations” but “longstanding expressions of the States' commitment to the protection and preservation of all human life,” a commitment that reflected “consistent and enduring themes of our philosophical, legal, and cultural heritages.” Glucksberg, 521 U.S. at 710–11. In the companion case, Vacco v. Quill, 521 U.S. 793 (1997)Google Scholar, the Court also held that New York did not violate the Fourteenth Amendment's equal protection clause by permitting physicians (without threat of criminal liability) to carry out patients' wishes that life support be withdrawn while continuing to prohibit physicians (among others) from aiding in the suicide of terminally ill patients not dependent on life support.

29 Sinsheimer, Robert, “The Prospect of Designed Genetic Change,” Engineering and Science 32, no. 7 (04 1969): 13.Google Scholar

30 Should medicine ever develop the capability of making precise changes in an individual's genome (that is, through a refined version of today's “gene therapy” experiments), then the genes we live with might come to be more a matter of choice rather than chance. (We might ask, however, whose choice this would be—our choice, or that of our parents?)

31 The Human Genome Project was begun in 1990 with a projected fifteen-year budget of $3 billion. Initially, the project was funded principally by the U.S. government (through the National Institutes of Health and the research division of the Department of Energy), with substantial additional support provided by the Howard Hughes Medical Institute and now by the Wellcome Trust of London. The funds are used by a consortium of laboratories around the world, among whom parts of the human genome have been parceled out for analysis. In June 1998, a private company, Celera, announced that, using a different method than that followed by the worldwide consortium, it should be able to complete the basic map of human genes within two years for a mere $200 million. Attempts by the leaders of the two groups to form a collaborative arrangement have stalled on the question of whether all results from all laboratories will be in the public domain, free of any patents or other commercial restrictions. Wade, Nicholas, “Talk of Collaboration on Decoding the Genome,” New York Times, 11 14, 1999, sec. 1, p. 18.Google Scholar

32 Annas, George J., “Privacy Rules for DNA Databanks: Protecting Coded ‘Future Diaries’Journal of the American Medical Association 270, no. 18 (11 17, 1993): 2346–50.CrossRefGoogle ScholarPubMed

33 In one oft-noted public opinion poll, 68 percent of the respondents were “very” or “somewhat” likely to undergo genetic testing, even when no treatment exists for the disease in question, yet only 27 percent reported hearing or reading “quite a lot” about genetic tests. Poll, Harris, no. 34, 05 29, 1995.Google Scholar

34 Capron, A. M., “Which Ills to Bear?: Reevaluating the ‘Threat’ of Modern Genetics,” Emory Law Journal 39, no. 3 (Summer 1990): 665–66.Google ScholarPubMed

35 See Gostin, Lawrence O., “Health Information Privacy,” Cornell Law Review 80, no. 3 (03 1995): 451.Google ScholarPubMed

36 42 U.S.C.A. sec. 1320–2 (West Supp. 1998). See generally Barefoot, Hartley L., “Enacting a Health Information Confidentiality Law: Can Congress Beat the Deadline?North Carolina Law Review 77, no. 1 (11 1998): 283360.Google Scholar

37 See, e.g., Pear, Robert, “Rules on Privacy of Patient Data Stir Hot Debate,” New York Times, 10 30, 1999, A1.Google Scholar

38 U.S. Congress, Office of Technology Assessment, Protecting Privacy in Computerized Medical Information (Washington, DC: U.S. Government Printing Office, 1993), 2829.Google Scholar

39 Mansoura, Monique K. and Collins, Francis S., “Medical Implications of the Genetic Revolution,” Journal of Health Care Law and Policy 1, no. 2 (1998): 343.Google Scholar

40 Annas, George J., Glantz, Leonard H., and Roche, Patricia A., The Genetic Privacy Act and Commentary (Boston, MA: Boston University School of Public Health, 1995)Google Scholar, available at [accessed October 1, 1998].

41 See generally Burke, Wylie et al. , “Recommendations for Follow-up Care of Individuals with an Inherited Predisposition to Cancer: II. BRCA1 and BRCA2,” Journal of the American Medical Association 277, no. 12 (03 26, 1997): 9971003.CrossRefGoogle ScholarPubMed

42 Croyle, R. T. et al. , “Psychological Responses to BRCA1 Mutation Testing: Preliminary Findings,” Health Psychology 16, no. 1 (01 1997): 6372CrossRefGoogle ScholarPubMed; Lynch, H. T. et al. , “A Descriptive Study of BRCA1 Testing and Reactions to Disclosure of Test Results,” Cancer 79, no. 11 (06 1, 1997): 2219–28.3.0.CO;2-Y>CrossRefGoogle ScholarPubMed

43 Among Ashkenazi Jews without a family history of breast or ovarian cancer, a finding of one of three specific BRCA mutations carries a risk of developing these diseases that is markedly higher than in the general population. Their risk level is lower, however, than that faced by women from families with a disease history who are found to have BRCA1 and BRCA2 mutations; these women suffer from risk rates of 85 and 63 percent, respectively. Struewing, J. P. et al. , “The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA2 Among Ashkenazi Jews,” New England Journal of Medicine 336, no. 20 (05 15, 1997): 1401–8.CrossRefGoogle ScholarPubMed

44 See, e.g., Rothstein, Mark A., “Genetic Testing: Employability, Insurability, and Health Reform,” Journal of the National Cancer Institute 7 (1995): 8790Google Scholar; and Billings, Paul R. et al. , “Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics 50, no. 3 (03 1992): 476–82.Google ScholarPubMed

45 Mansoura, and Collins, , “Medical Implications,” 343.Google Scholar

46 Ibid., 345.

47 Murray, Thomas H., “Genetics and the Moral Mission of Health Insurance,” Hastings Center Report 22, no. 6 (11/12 1992): 14.Google ScholarPubMed

48 Consider, for example, the Supreme Court's decision in Arizona Governing Committee v. Norris, 463 U.S. 1073 (1983)Google Scholar. In Norris, the Court determined that in enacting Title VII of the Civil Rights Act of 1964, Congress intended to prohibit employers from offering women lower monthly retirement benefits than men who have made the same contributions. In Los Angeles Dept. of Water & Power v. Manhart, 435 U.S. 702 (1978)Google Scholar, the Court had held that an employer violated Title VII by requiring its female employees to make larger contributions to a pension fund than male employees in order to obtain the same monthly benefits upon retirement. In Manhart, the Court had opined that Title VII's “focus on the individual is unambiguous,” since the statute prohibits an employer from treating some employees less favorably than others because of their race, religion, sex, or national origin (ibid., at 708). “[A]ny individual's life expectancy is based on a number of factors, of which sex is only one./ [O]ne cannot ‘say that an actuarial distinction based entirely on sex is “based on any other factor than sex. “Sex is exactly what it is based on.’” Ibid., at 712–13. Applying Manhart, the Court held in Norris “that the classification of employees on the basis of sex is no more permissible at the pay-out stage of a retirement plan than at the pay-in stage.” Norris, 463 U.S. at 1081 (footnote omitted).

It is important to remember that Norris's rejection of the use of accurate class-based predictions is solely a matter of statutory interpretation; the trial court had rejected the plaintiffs' claim that the retirement plan violated the equal protection clause of the Fourteenth Amendment. Because the McCarran-Ferguson Act of 1945 assigns the regulation of insurance to the states (except to the extent that a federal statute explicitly provides otherwise, which Title VII does not), Norris did not challenge Arizona's regulation of insurance practices, under which companies issuing annuity or insurance contracts were permitted to use sex-segregated tables. The heart of the difficulty, as Justice Lewis Powell pointed out, is that an employment statute that insists on individualizing each employee to ensure that he or she is not subject to group-based discrimination is fundamentally inconsistent with the business of insurance.

Insurance and life annuities exist because it is impossible to measure accurately how long any one individual will live. Insurance companies cannot make individual determinations of life expectancy; they must consider instead the life expectancy of identifiable groups. Given a sufficiently large group of people, an insurance company can predict with considerable reliability the rate and frequency of deaths within the group based on the past mortality experience of similar groups. Title VII's concern for the effect of employment practices on the individual thus is simply inapplicable to the actuarial predictions that must be made in writing insurance and annuities.

49 “The immediate and direct tie between genetics and ethnicity may make genetic testing a more blatant use of a potentially explosive and discriminatory social classification scheme.” Murray, , “Genetics and the Moral Mission of Health Insurance,” 14.Google Scholar

50 See, e.g., Cowley, Geoffrey, “Flunk the Gene Test and Lose Your Insurance,” Newsweek, 12 23, 1996, 48Google ScholarPubMed; and Billings, et al. , “Discrimination as a Consequence.”Google Scholar

51 Medical Information Bureau, Inc., A Consumer's Guide to the Medical Information Bureau (Westwood, MA: Medical Information Bureau, 1998), 7Google Scholar. Deborah Stone is skeptical that such forbearance occurs:

In practice, there appears to be very little restriction on insurance companies' use of information obtained from the bureau in underwriting decisions. Moreover, although the MIB has procedures for individuals to correct information in their files, the procedures are cumbersome and it is often difficult for consumers to find out why they have been denied insurance in the first place.

Stone, Deborah A., “The Implications of the Human Genome Project for Access to Health Insurance,” in Murray, Thomas H., Rothstein, Mark A., and Murray, Robert F. Jr., eds., The Human Genome Project and the Future of Health Care (Bloomington, IN: Indiana University Press, 1997), 143.Google Scholar

52 Ibid., 144.

53 Mansoura, and Collins, , “Medical Implications,” 333.Google Scholar

34 “About 85–90 percent of health insurance is currently purchased through group plans which accept all full-time employees and dependents without evidence of insurability.” Report of the ACLI-HIAA Task Force on Genetic Testing (Washington, DC: American Council of Life Insurers and Health Insurance Association of America, 1991), 6.Google Scholar

55 Deborah Stone argues that the industry position disguises the amount of medical underwriting that takes place because about a third of all workers are at firms employing twenty-five or fewer employees (a size at which underwriting commonly occurs), and that “over the last decade or so there has been a trend toward using individual underwriting with even larger employee groups.” Stone, , “Implications of the Human Genome Project,” 145.Google Scholar

56 As Justice Powell observed in his dissenting opinion in Arizona Governing Committee v. Norris:

The most accurate classification system would be to identify all attributes that have some verifiable correlation with mortality and divide people into groups accordingly, but the administrative cost of such an undertaking would be prohibitive. Instead of identifying all relevant attributes, most insurance companies classify individuals according to criteria that provide both an accurate and efficient measure of longevity, including a person's age and sex. These particular criteria are readily identifiable, stable, and easily verifiable.

Norris, 463 U.S. at 1104 (Powell, J., dissenting) (citing Benston, George S., “The Economics of Gender Discrimination in Employee Fringe Benefits: Manhart Revisited,” University of Chicago Law Review 49, no. 2 [Spring 1982]: 499501).CrossRefGoogle Scholar

57 Most Mendelian disorders—those whose manifestation follows the classical pattern associated with point mutations in dominant or recessive genes—are very rare. Especially in adults, the inherited genetic mutations associated with common diseases such as cancer or heart disease are better described as creating susceptibilities or predispositions, the manifestation of which is non-Mendelian because it depends on other inherited or acquired genetic variations and on other factors in the person's environment. “The majority of genetic diseases are polygenic and multifactorial.” Rothstein, Mark, “Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: An Analysis of a Unique Minnesota Law,” American Journal of Law and Medicine 24, no. 4 (1998): 455.Google ScholarPubMed

58 President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Securing Access to Health Care (Washington, DC: U.S. Government Printing Office, 1983), 1:4Google Scholar. The commission was authorized by an act of Congress in 1978. Pub. L. 95–622, 42 U.S.C. sec. 300v–1. The original eleven members were named by President Carter in 1979 and sworn in at the White House in January 1980. By the time the commission's report on access to health care—one of eleven reports, most of which responded to specific mandates in the commission's authorizing statute—was released in March 1983, eight of its members were appointees of President Reagan, while three of Carter's appointees remained.

59 Epstein, Richard A. takes a more skeptical view of such claims in Mortal Peril (New York: Addison-Wesley, 1997).Google Scholar

60 President's Commission, Securing Access to Health Care, 16:Google Scholar

Health, insofar as it is the absence of pain, suffering, or serious disability, is what has been called a primary good, that is, there is no need to know what a particular person's other ends, preferences, and values are in order to know that health is good for that individual. It generally helps people carry out their life plans, whatever they may happen to be. This is not to say that everyone defines good health in the same way or assigns the same weight or importance to different aspects of being healthy, or to health in comparison with the other goods of life. Yet though people may differ over each of these matters, their disagreement takes place within a framework of basic agreement on the importance of health.

61 Ibid., 17:

The effects that meeting (or failing to meet) people's health needs have on the distribution of opportunity in a society become apparent if diseases are thought of as adverse departures from a normal level of functioning. In this view, health care is that which people need to maintain or restore normal functioning or to compensate for inability to function normally.

62 Ibid.:

Although health care in many situations may … not be necessary for good physical health, a great deal of relief from unnecessary concern—and even avoidance of pointless or potentially harmful steps—is achieved by health care in the form of expert information provided to worried patients. Even when a prognosis is unfavorable and health professionals have little treatment to offer, accurate information can help patients plan how to cope with their situation.

63 Ibid.:

[H]ealth care takes on special meaning because of its role in the beginning of a human being's life as well as the end. In spite of all the advances in the scientific understanding of birth, disease, and death, these profound and universal experiences remain shared mysteries that touch the spiritual side of human nature. For these reasons a society's commitment to health care reflects some of its most basic attitudes about what it is to be a member of the human community.

64 Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104–191, 110 Stat. 1936 (1996).Google Scholar

65 Sec. 101 of HIPAA (which amends the Employee Retirement Income Security Act of 1974) contains language at sec. 701(a)(1) that defines a “preexisting condition” very broadly as “a condition (whether physical or mental), regardless of the cause of the condition, for which medical advice, diagnosis, care, or treatment was recommended or received within the 6-month period ending on the enrollment date,” but sec. 701(b)(1)(B) excludes “genetic information” from the definition of preexisting condition “in the absence of a diagnosis of the condition related to such information.” (The same effect is achieved in the Public Health Service Act, and other provisions of federal law relating to different types of health insurance, through amendments that parallel those made to ERISA.)

66 Yesley, M. S., “Protecting Genetic Difference,” Berkeley Technology Law Journal 13, no. 2 (Spring 1998): 656Google ScholarPubMed. By the end of 1998, thirty-five states had legislation that imposed at least a temporary ban on insurers' use of genetic information to determine eligibility or premium level for health insurance, and twenty-five states had restricted insurers' ability to impose conditions on insurance based on genetic information.

67 Ariz. Rev. Stat. sec. 20–2301 (1999).

68 Wise. Stat. Ann. sec. 631.89 (West 1998).

69 This statute resembles the recommendations endorsed by the Hereditary Diseases Foundation; the National Institutes of Health; the Department of Energy Working Group on Ethical, Legal, and Social Implications of the Human Genome Project; and the National Action Plan for Breast Cancer to prevent genetic discrimination in health insurance. Statement on Protection Against Genetic Discrimination (1995)Google Scholar, available at [accessed August 17, 1999].

70 In 1998, Florida moved beyond this approach and enacted a statute that prohibits insurers from using genetic information to cancel, limit, or deny coverage, or to establish premium rates based on such information. Fla. Stat. chap. 627.4301 (1998).

71 Fla. Stat. chap. 760.40 (1998).

72 Ga. Code Ann. sec. 33–54–3 (1999).

73 Annas, , Glantz, , and Roche, , The Genetic Privacy Act and Commentary.Google Scholar

74 See, e.g., Reilly, Philip R., “Panel Comment: The Impact of the Genetic Privacy Act on Medicine,” Journal of Law, Medicine, and Ethics 23 (1995): 379CrossRefGoogle Scholar; and Troy, Edwin S. Flores, “The Genetic Privacy Act: An Analysis of Privacy and Research Concerns,” Journal of Law, Medicine, and Ethics 25 (1997): 266.CrossRefGoogle ScholarPubMed

75 Cal. Health and Safety Code sec. 1374.7(d) (West 1998) and Cal. Ins. Code sec. 10123.3(d) (West 1998). Note that with respect to life and disability insurance, the California Insurance Code uses a narrower definition of “genetic characteristic.” Cal. Ins. Code sec. 10147(b) (West 1998).

76 Yesley, , “Protecting Genetic Difference,” 660Google Scholar (citing statutes in Florida, Georgia, Illinois, Minnesota, New York, Tennessee, and Texas).

77 26 C.F.R. sec. 54.9801–2T, 29 C.F.R. sec. 2590.701–2, 45 C.F.R. sec. 114.103.

78 As will be explored in the following section, the result could be that members in group health plans will be better off when a disease is seen as “genetic” rather than as “environmental”: coal miners, for instance, would hope to have their risk of developing lung disease classed as “something that runs in the family” rather than as “something that all miners have.” Mark Rothstein argues that reasoning of this sort would also support prohibiting insurers from using any genetic information. If no insurer is allowed to use such information in underwriting, then the cost of adverse selection would be shared equally among all insurers. Rothstein, , “Protecting Genetic Privacy.”Google Scholar

79 See, e.g., Billings, et al. , “Discrimination as a Consequence.”Google Scholar

80 HIPAA acknowledges this principle because it provides that the maximum length of a “preexisting condition exclusion” that a group health plan may impose on a new participant—which is twelve months (or eighteen months for a late enrollee)—will be reduced “by the aggregate of the periods of creditable coverage” that the participant had through a prior group or other form of health insurance. Thus, HIPAA and comparable state statutes aim principally at allowing people who are already insured to continue to have health care coverage when they move to a new position; such “portability” suggests that the person is not waiting until he or she knows “the house is on fire” before getting insurance.

81 Mansoura, and Collins, , “Medical Implications,” 343.Google Scholar

82 Those reasons may diminish as gene tests become a more familiar part of medical care, as the range of information they supply increases, and as the treatments available from “molecular medicine” become more available and efficacious. In sum, those reasons may diminish as the mystery and dread that now attach to this type of testing abate. People will then overcome the simplistic genetic determinism that lies behind this thinking and come to see that genetic information does not supply a map of one's destiny or a measure of one's worth.

83 False statements on an application can void a policy, though this is a penalty that typically only has teeth if the insured-against event occurs during the “contestability period” within a year or two after the application.

84 The section on risks includes the following language:

Myriad Genetic Laboratories will strive to keep the results of your test confidential. It will release your test results only as directed by you (or a person legally authorized to act on your behalf) in writing. Despite the company's best efforts, there is a small chance that a staff member will inappropriately disclose your test results to a third party.

If you learn that you have a genetic predisposition to breast and/or ovarian cancer you will have knowledge that you may be forced to disclose to third parties. For example, as insurance companies learn more about hereditary risk for cancer, they may ask about the results of genetic tests of those who have or apply for coverage.

In most states, life and disability insurers may ask such questions and use the answers in underwriting decisions. In less than half the states, there are laws that restrict the uses that health insurers may make of such information. These laws are not comprehensive and may not protect you. Knowledge that you have a genetic predisposition to breast and/or ovarian cancer may compromise your ability to obtain or maintain insurance coverage.

Because this is a new test and there is much to learn about findings that suggest increased risk, some states may define it as investigational.

Genetics, Myriad, “Informed Consent for Genetic Susceptibility Testing for Breast and Ovarian Cancer,” available at [accessed 10 1, 1998]Google Scholar. Myriad has now replaced the consent form with a multipart website devoted to genetic testing for hereditary breast and ovarian cancer. This site includes educational materials for patients, information for professionals, and a glossary. See [accessed December 10, 1999].

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