Information(al) matters: Bioethics and the boundaries of the public and the private

Social Philosophy and Policy

Volumn 19, Issue 2, 2002, Pages 83-110

  Parker, Lisa S ^a  

^a UNIVERSITY OF PITTSBURGH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ANALYTICAL APPROACH; ARTICLE; BEHAVIOR; BIOETHICS; BIOETHICS AND PROFESSIONAL ETHICS; CONFIDENTIALITY; CULTURAL ANTHROPOLOGY; DECISION MAKING; DOCTOR PATIENT RELATION; ETHICS; FAMILY; FEMINISM; FRIEND; GENETIC COUNSELING; GENETIC PRIVACY; GENETIC SCREENING; GENETICS AND REPRODUCTION; HEALTH CARE DELIVERY; HEALTH INSURANCE; HUMAN; HUMAN RELATION; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; ORGANIZATION AND MANAGEMENT; PHILOSOPHICAL APPROACH; POLICY; PREVENTIVE MEDICINE; PRIVACY; PROFESSIONAL PATIENT RELATIONSHIP;

ANALYTICAL APPROACH; BIOETHICS AND PROFESSIONAL ETHICS; GENETICS AND REPRODUCTION; PHILOSOPHICAL APPROACH; PROFESSIONAL PATIENT RELATIONSHIP;

BIOETHICS; CONFIDENTIALITY; CULTURAL DIVERSITY; DECISION MAKING; DELIVERY OF HEALTH CARE; DISCLOSURE; ETHICAL ANALYSIS; FAMILY; FEMINISM; FRIENDS; GENETIC COUNSELING; GENETIC PRIVACY; GENETIC SCREENING; HUMANS; INFORMED CONSENT; INTERPERSONAL RELATIONS; MANAGED CARE PROGRAMS; PHYSICIAN-PATIENT RELATIONS; POWER (PSYCHOLOGY); PREVENTIVE MEDICINE; PRIVACY; PRIVATE SECTOR; PUBLIC POLICY; PUBLIC SECTOR; TRUTH DISCLOSURE;

EID: 0038528522     PISSN: 02650525     EISSN: None     Source Type: Journal    
DOI: 10.1017/S0265052502192041     Document Type: Article

References (86)

1. While bioethics, like most fields, is not monolithic and univocal, with respect to the points raised in this essay, there is sufficient similarity among its approaches, practitioners, and texts to warrant referring to American bioethics as though, as a field, it views these issues from one dominant perspective and speaks about them with one voice. Moreover, although some of the points made may be equally true of, and are certainly relevant for thinking about, bioethics in other countries, my focus is on American bioethics not only because I know it best, but also because various features of the American cultural and political context - especially the American fascination with autonomy, the emergence of the distinction between public and private in American political thought, and America's pluralism and commitment to liberalism - are salient for the argument I am making. In cultures with a less individualistic understanding of privacy and of autonomous decision-making, for example, bioethics may have evolved somewhat differently along the lines that I discuss.
2. Leonore Davidoff, "Regarding Some 'Old Husbands' Tales': Public and Private in Feminist History, " in Joan B. Landes, ed., Feminism: The Public and the Private (New York: Oxford University Press, 1998), 164-94.
3. Ibid., 179.
4. Ibid., 177.
5. Iris Marion Young, Justice and the Politics of Difference (Princeton, NJ: Princeton University Press, 1990), 98.
6. Ibid.
7. Ibid., 99.
8. Ibid., 111.
9. John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 1971).
10. Young, Justice and the Politics of Difference, 115.
11. Ibid.
12. I date the inception of contemporary American bioethics in the late 1960s and early 1970s; thus, its early decades are, roughly, the 1970s and 1980s. Here "bioethics" includes clinical ethics, tort law focused on medical practice, and interdisciplinary bioethical scholarship. Later in this essay it will be necessary to distinguish among these venues of bioethical analysis and action, especially because some concerns that may be properly subject to bioethical analysis may not be appropriately regulated by law.
13. Davidoff considers the area of science and medicine to be among the most influential of differentiated public realms; see Davidoff, "Regarding Some 'Old Husbands' Tales, " 176.
14. John Durant, Anders Hansen, and Martin Bauer, "Public Understanding of the New Genetics, " in Theresa Marteau and Martin Richards, eds., The Troubled Helix: Social and Psychological Implications of the New Human Genetics (Cambridge: Cambridge University Press, 1996), 236.
15. Susan M. Wolf, "Introduction: Gender and Feminism in Bioethics, " in Susan M. Wolf, ed., Feminism and Bioethics: Beyond Reproduction (New York: Oxford University Press, 1996), 6.
16. See Lisa S. Parker and Robert M. Arnold, "Confidentiality - Revealing Trends in Bioethics, " Bioethics Forum 14, no. 3/4 (1998): 32-42.
17. As we shall see, however, a relationship that affords patients some privacy is not necessarily, or in all senses, a private relationship.
18. Wolf, "Introduction, " 3-43, esp. 18-21.
19. In a landmark decision in Tarasoff v. Regents of the Univ. of Cal., 551 P.2d 334 (Cal. 1976), the majority opinion of the California Supreme Court held that when the patient of a psychotherapist makes a credible threat of serious harm to an identifiable third party, the therapist has a legal duty to take reasonable measures to protect that person, which might include directly warning him or her.
20. Judicial Council of the American Medical Association, Current Opinions of the Judicial Council of the American Medical Association (Chicago: American Medical Association, 1981), sec. IV, p. ix.
21. Mark Siegler, "Confidentiality in Medicine - A Decrepit Concept, " New England Journal of Medicine 307, no. 24 (1982): 1518-21.
22. Lawrence Gostin, "Health Care Information and the Protection of Personal Privacy: Ethical and Legal Considerations, " Annals of Internal Medicine 127, no. 8 (1997): 683-90.
23. Indeed, the same activities are frequently conducted as "research, " which has the similar goal of generating generalizable knowledge for the benefit of future patients. As research, these activities would require the approval and oversight of institutional review boards and the informed consent of the subjects whose information is collected.
24. Dorothy E. Roberts, "Reconstructing the Patient: Starting with Women of Color, " in Wolf, ed., Feminism and Bioethics, 116-43.
25. By "disenfranchised, " I intend to mark those people who lack power or the relevant means to participate fully within a given institution, usually a hierarchical one, or who are perceived as lacking the requisite means or characteristics for such participation. Prior to being granted the right to vote, American women lacked the franchise, and thereby lacked the political power to participate fully in American society; moreover, the reasons given for not granting them the right to vote included their not having the requisite characteristics (e.g., ability to reason) for political participation. Patients may be "disenfranchised" because they are poor, and thereby lack the resources to participate fully in medical decision-making, or because their values or way of living place them too far from the norm to be viewed as being as capable of participating in their health care as more mainstream patients are. In other cases, a lack of specialized information, education, or social or political power may be salient. Characteristics of race, sex, sexual orientation, and age may lead a person to be "disenfranchised" within hierarchies or institutions that tend to privilege non-aged white heterosexual males, their interests, or their perspectives. Illness and disability may be disenfranchising to the extent that they prevent the ill and disabled from participating fully (and powerfully) in social processes and institutions to which the healthier and more able-bodied have access. Characteristics that result in disenfranchisement tend to cluster; for example, being poor is often associated with having less political clout and formal education than those who are wealthier, and with having a lower health status than the wealthier as well. Likewise, women are, as a group, more impoverished than men, and women also comprise a larger percentage of the "old old" (that is, those over age 80), who are at increased risk of both impoverishment and disabling illness.
26. Public policies tend to reflect the values and worldviews of those in power, members of dominant groups, and those who constitute a majority. Donald Ainslie, for example, points out that the perspective of many North American gay men, according to which practicing safer sex and not disclosing that one is HIV-positive is an appropriate ethical response to the HIV epidemic in their communities, is not a perspective reflected in mainstream bioethical, medical, and public health admonitions to disclose one's HIV status to sex partners. See Donald C. Ainslie, "Questioning Bioethics: AIDS, Sexual Ethics, and the Duty to Warn, " Hastings Center Report 29, no. 5 (1999): 26-35.
27. The actual history of informed consent, including its development as a widespread social practice in medicine, is the subject of some debate. See, for example, Ruth R. Faden and Tom L. Beauchamp, A History and Theory of Informed Consent (New York: Oxford University Press, 1986), esp. 53-60; and Jessica W. Berg et al., Informed Consent: Legal Theory and Clinical Practice, 2d ed. (Oxford: Oxford University Press, 2001), esp. 41-52. Nevertheless, in the United States the practice of informed consent was, by the 1960s, becoming rather thoroughly, if grudgingly, entrenched.
28. The actual history of informed consent, including its development as a widespread social practice in medicine, is the subject of some debate. See, for example, Ruth R. Faden and Tom L. Beauchamp, A History and Theory of Informed Consent (New York: Oxford University Press, 1986), esp. 53-60; and Jessica W. Berg et al., Informed Consent: Legal Theory and Clinical Practice, 2d ed. (Oxford: Oxford University Press, 2001), esp. 41-52. Nevertheless, in the United States the practice of informed consent was, by the 1960s, becoming rather thoroughly, if grudgingly, entrenched.
29. In this way, bioethics devised a social construct - the patient as rational decisionmaker - much as the logic of identity constructed its (self-)conception of universalizing reason.
30. Bioethics's construction of the physician-patient relationship as a private one reflected bioethics's alignment with the perspective of professionals. The privacy of the relationship was viewed as constraining professional action (by imposing obligations of confidentiality), and was supported by the profession for the instrumental reason that preserving privacy had therapeutic benefits. (To say that maintaining confidentiality has therapeutic benefits is, of course, to say that it serves patients' interests. My claim here about why medical professionals supported treating the physician-patient relationship as private does not assume that patients' and professionals' interests are necessarily, or even frequently, opposed, but only that professionals' support for measures that protect patients' interests is greater - and easier for bioethicists to gain - when those interests coincide.) Neither medicine nor bioethics was particularly concerned to articulate how public decisions constituted and constrained the physician-patient relationship in ethically troubling ways, ways that were themselves more visible from the perspective of patients, especially the poor and disenfranchised patients who were negatively affected by the constraint. See Janet Farrell Smith, "Communicative Ethics in Medicine: The Physician-Patient Relationship, " in Wolf, ed., Feminism and Bioethics, 196-97; Roberts, "Reconstructing the Patient, " 116-43; and Wolf, "Introduction, " 3-43.
31. Bioethics's construction of the physician-patient relationship as a private one reflected bioethics's alignment with the perspective of professionals. The privacy of the relationship was viewed as constraining professional action (by imposing obligations of confidentiality), and was supported by the profession for the instrumental reason that preserving privacy had therapeutic benefits. (To say that maintaining confidentiality has therapeutic benefits is, of course, to say that it serves patients' interests. My claim here about why medical professionals supported treating the physician-patient relationship as private does not assume that patients' and professionals' interests are necessarily, or even frequently, opposed, but only that professionals' support for measures that protect patients' interests is greater - and easier for bioethicists to gain - when those interests coincide.) Neither medicine nor bioethics was particularly concerned to articulate how public decisions constituted and constrained the physician-patient relationship in ethically troubling ways, ways that were themselves more visible from the perspective of patients, especially the poor and disenfranchised patients who were negatively affected by the constraint. See Janet Farrell Smith, "Communicative Ethics in Medicine: The Physician-Patient Relationship, " in Wolf, ed., Feminism and Bioethics, 196-97; Roberts, "Reconstructing the Patient, " 116-43; and Wolf, "Introduction, " 3-43.
32. Bioethics's construction of the physician-patient relationship as a private one reflected bioethics's alignment with the perspective of professionals. The privacy of the relationship was viewed as constraining professional action (by imposing obligations of confidentiality), and was supported by the profession for the instrumental reason that preserving privacy had therapeutic benefits. (To say that maintaining confidentiality has therapeutic benefits is, of course, to say that it serves patients' interests. My claim here about why medical professionals supported treating the physician-patient relationship as private does not assume that patients' and professionals' interests are necessarily, or even frequently, opposed, but only that professionals' support for measures that protect patients' interests is greater - and easier for bioethicists to gain - when those interests coincide.) Neither medicine nor bioethics was particularly concerned to articulate how public decisions constituted and constrained the physician-patient relationship in ethically troubling ways, ways that were themselves more visible from the perspective of patients, especially the poor and disenfranchised patients who were negatively affected by the constraint. See Janet Farrell Smith, "Communicative Ethics in Medicine: The Physician-Patient Relationship, " in Wolf, ed., Feminism and Bioethics, 196-97; Roberts, "Reconstructing the Patient, " 116-43; and Wolf, "Introduction, " 3-43.
33. Unlike Ruth Faden and Tom Beauchamp's philosophical account of informed consent, which does recognize this possibility (see Faden and Beauchamp, A History and Theory of Informed Consent), most bioethical analyses are mainly concerned with the real-world process of obtaining informed consent within the norm-governed institutions of American law and medicine.
34. As philosopher Dan Brock notes, "[A]lthough shared decision making is an ultimately sound ideal, a simple physician-patient division of labor between facts and values cannot be plausibly maintained." Dan Brock, "The Ideal of Shared Decision Making between Physicians and Patients, " Kennedy Institute of Ethics Journal 1, no. 1 (1991): 31.
35. Ibid.
36. In making this claim, I risk caricaturing both bioethics and medicine; after all, medical practice relies on patients' reports of symptoms. Nevertheless, until recently neither field has viewed public understanding of medical science as an active social construct, but rather as a lack of expertise. See Durant, Hansen, and Bauer, "Public Understanding of the New Genetics." The Internet is one of the most obvious means by which public understanding of health-related issues is constructed; it promises to empower individuals by providing ready access (and free access, through public libraries) to the fruits of the Information Age. However, relatively few patients can understand on-line medical journal articles without having them interpreted by their physicians, and provider-sanctioned sites designed for nonprofessionals merely extend the expertise of the medical establishment from doctors' offices to the living rooms of their patients. Information brought to medical encounters from nonexpert, patient-generated, or patient-activist sites on the Internet is regarded in much the same way that patient-generated reports of patients' experiences with illnesses and treatments are regarded-namely, as "second best, " nonobjective, and unscientific.
37. Ibid.
38. The claim that bioethics assigned physicians and medicoscientific facts to 'the public', and patients and their values to 'the private', may seem odd juxtaposed with an account of how bioethics conceived of the physician-patient relationship as itself being private. Yet I hope to show that this conceptualization of the relationship as private reflected bioethics's preoccupation with the ethical dimensions of health professionals' concerns and thus bioethics's alignment with professional and public interests.
39. By "critically interrogate, " I mean that bioethicists should do more than merely investigate the status of professionals and their knowledge, which seems to be a rather academic exercise. Nor do I mean that bioethicists should simply criticize that status, because there is much that is appropriate about the high regard in which medical professionals and their knowledge are held. I mean instead that bioethicists should help to create a social and intellectual climate in which it is appropriate to question professionals' perspective and authority, that they should encourage healthy skepticism of the status of professionals and their information, and that they should actively point out that professional perspectives are value-laden and partial. I envision this enterprise as intellectually grounded, yet expressed not only in scholarship and academic discourse, but also in discourse accessible to nonacademics and nonprofessionals. The activity I envision thus has elements of activism, because it seeks social change; however, its agenda is not to implement particular changes, but to inculcate skepticism with respect to prevailing norms and structures and to "give permission" to others (nonacademics, patients) to engage in a similar critical enterprise. Hilde Lindemann Nelson, for example, writes about the importance of those in a position of some authority, such as academics, lending their voices and their example to those who may not be empowered to advance their own interests; see Hilde Lindemann Nelson, "Stories of My Old Age, " in Margaret Urban Walker, ed., Mother Time: Women, Aging, and Ethics (Lanham, MD: Rowman and Littlefield, 1999), 75-93.
40. Wolf explores reasons for bioethics's isolation from scholarship that promotes such critique, such as feminist and critical race theory as well as gender, class, disability, cultural, and science studies; see Wolf, "Introduction, " 10-14, 20-21. By advocating the methods of cultural and science studies, I refer to theoretical and empirical methods that investigate science as a social practice and as a cultural endeavor, that study the production of scientific knowledge, that examine how science and technology shape contemporary culture, and that reveal how contemporary values shape scientific norms and research agendas. There are approximately thirty programs at North American universities engaged in such cultural studies of science or science studies. (Cultural studies is a broader field that frequently turns its attention to topics or phenomena involving health and disease, embodiment, medicine, and science.)
41. Carl E. Schneider, The Practice of Autonomy: Patients, Doctors, and Medical Decisions (New York: Oxford University Press, 1998), 75-85.
42. On bioethics's shifting attention, from conflict resolution to policy development and analysis of institutional structures, see Lachlan Forrow, Robert M. Arnold, and Lisa S. Parker, "Preventive Ethics: Expanding the Horizons of Clinical Ethics, " Journal of Clinical Ethics 4, no. 4 (1993): 287-94. On trends in bioethics's approach to protection of informational privacy, see Parker and Arnold, "Confidentiality."
43. On bioethics's shifting attention, from conflict resolution to policy development and analysis of institutional structures, see Lachlan Forrow, Robert M. Arnold, and Lisa S. Parker, "Preventive Ethics: Expanding the Horizons of Clinical Ethics, " Journal of Clinical Ethics 4, no. 4 (1993): 287-94. On trends in bioethics's approach to protection of informational privacy, see Parker and Arnold, "Confidentiality."
44. In fact, Siegler was responding to concern expressed by his patient. I do not mean to suggest that patients are not concerned about features of the health-care environment, but merely that they also have ethical concerns related to health and medical information that fall outside of this domain.
45. Donald Ainslie, "Redefining Bioethics in the Age of AIDS" (manuscript), iii.
46. Ibid.
47. Ibid., 11.
48. Americans with Disabilities Act, 42 U.S.C. §§ 12101-213 (West 1995).
49. See Joseph S. Alper, "Does the ADA Provide Protection against Discrimination on the Basis of Genotype?" Journal of Law, Medicine, and Ethics 23, no. 2 (1995): 167-72; and 136 Cong. Rec. H4623, H4624-25, H4637 (daily ed. July 12, 1990).
50. Karen H. Rothenberg, "Genetic Information and Health Insurance: State Legislative Approaches, " Journal of Law, Medicine, and Ethics 23, no. 4 (1995): 312-19.
51. Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, § 264(c)(2), 110 Stat. 1936, 2033 (1996).
52. Federal Rehabilitation Act, 29 U.S.C. § 794 (1973).
53. Alper, "Does the ADA Provide Protection?"
54. Harold Edgar, "Outside the Community, " Hastings Center Report 22, no. 6 (1992): 35.
55. Susan M. Wolf, "Beyond 'Genetic Discrimination': Toward the Broader Harm of Geneticism, " Journal of Law, Medicine, and Ethics 23, no. 4 (1995): 348.
56. Ibid.
57. Ibid.
58. Thomas Nagel, "Concealment and Exposure, " Philosophy and Public Affairs 27, no. 1 (1998): 3-30.
59. Rem B. Edwards and Glenn C. Graber, "Confidentiality and the Professions, " in Edwards and Graber, Bioethics (San Diego, CA: Harcourt Brace Jovanovich, 1988), 78.
60. Ruth Gavison, "Privacy and the Limits of Law, " in Ferdinand David Schoeman, ed., Philosophical Dimensions of Privacy: An Anthology (Cambridge: Cambridge University Press, 1984), 346-402.
61. Charlie Davison, "Predictive Genetics: The Cultural Implications of Supplying Probable Futures, " in Marteau and Richards, eds., The Troubled Helix, 322.
62. Social pressure to change health-related behaviors may be stronger if avoidance of disease and disability is viewed as a way of lowering the social burden of health-care costs; this view of disease avoidance is, in fact, often invoked in arguments for preventive interventions.
63. See, for example, Robert Crawford, "Healthism and the Medicalization of Everyday Life, " International Journal of Health Services 10, no. 3 (1980): 365-88; and Geoffrey Rose, The Strategy of Preventive Medicine (Oxford: Oxford University Press, 1992).
64. See, for example, Robert Crawford, "Healthism and the Medicalization of Everyday Life, " International Journal of Health Services 10, no. 3 (1980): 365-88; and Geoffrey Rose, The Strategy of Preventive Medicine (Oxford: Oxford University Press, 1992).
65. Nagel, "Concealment and Exposure, " 4.
66. Ibid., 17.
67. Davison, "Predictive Genetics, " 319.
68. As Ainslie notes, some ethical questions specifically relate "to our status as embodied beings who suffer from illness and death, who can alter our bodies cosmetically, who can infect one another with various diseases, who can find out about some aspects of our biological futures through genetic testing, and so on." Donald C. Ainslie, "Bioethics and the Problem of Pluralism, " in this volume.
69. Mark Twain, "Was It Heaven? Or Hell?" in Charles Neider, ed., The Complete Short Stories of Mark Twain (New York: Bantam Books, 1957), 474-91.
70. Diane Paul, "Eugenic Anxieties, Social Realities, and Political Choices, " in Carl F. Cranor, ed., Are Genes Us? The Social Consequences of the New Genetics (New Brunswick, NJ: Rutgers University Press, 1994), 142-54.
71. With reference to specific cases, Mary Mahowald does present analyses that, although sketchy, attempt to address such issues at the level of individual decision-making; see Mary Briody Mahowald, Genes, Women, Equality (New York: Oxford University Press, 2000).
72. Initial concerns here include medicoscientific questions about the tests' sensitivity, specificity, and positive predictive value, and about the residual risk of disease. After these questions are addressed, the cost-effectiveness of the tests, as well as other public-sphere questions and ethical issues (e.g., equitable access to testing, and concerns about stigma and discrimination), figure into the establishment of a standard of care for clinical practice.
73. See Lisa S. Parker, "Breast Cancer Genetic Screening and Critical Bioethics' Gaze, " Journal of Medicine and Philosophy 20, no. 3 (1995): 313-37. Regarding prenatal testing, see Angus Clarke, "Is Non-directive Generic Counseling Possible?" Lancet 338, no. 8773 (1991): 998-1001.
74. See Lisa S. Parker, "Breast Cancer Genetic Screening and Critical Bioethics' Gaze, " Journal of Medicine and Philosophy 20, no. 3 (1995): 313-37. Regarding prenatal testing, see Angus Clarke, "Is Non-directive Generic Counseling Possible?" Lancet 338, no. 8773 (1991): 998-1001.
75. For examples of such analyses, see American Society of Human Genetics, "Professional Disclosure of Familial Genetic Information, " American Journal of Human Genetics 62, no. 2 (1998): 474-83; and Mary Z. Pelias, "Duty to Disclose in Medical Genetics: A Legal Perspective, " American Journal of Medical Genetics 39, no. 3 (1991): 347-54.
76. For examples of such analyses, see American Society of Human Genetics, "Professional Disclosure of Familial Genetic Information, " American Journal of Human Genetics 62, no. 2 (1998): 474-83; and Mary Z. Pelias, "Duty to Disclose in Medical Genetics: A Legal Perspective, " American Journal of Medical Genetics 39, no. 3 (1991): 347-54.
77. Although state court decisions do not establish binding precedent nationally, in determining the criteria for the permissible breach of client or patient confidentiality to disclose information to at-risk relatives, two state court opinions regarding professionals' legal liability for failure to disclose genetic information have been influential, in a manner similar to Tarasoff in the 1970s; this is the case even though these two opinions offer conflicting guidance. See Pate v. Threlkel, 661 So. 2d 278 (Fla. 1995); and also Safer v. Estate of Pack, 677 A.2d 1188 (N.J. Super. Ct. App. Div. 1996), cert, denied, 683 A.2d 1163 (N.J. 1996). The different opinions are roughly this: The Pate court held that the physician has a duty to disclose familial implications of his or her patient's condition to the patient, while the Safer court held that there could be a duty to disclose the risks to the patient's at-risk relatives.
78. Lisa Soleymani Lehmann et al., "Disclosure of Familial Genetic Information: Perceptions of the Duty to Inform, " American Journal of Medicine 109, no. 9 (2000): 705-11.
79. Daniel P. Sulmasy, "On Warning Families about Genetic Risk: The Ghost of Tarasoff, " American Journal of Medicine 109, no. 9 (2000): 738-39.
80. Ellen Wright Clayton, "What Should the Law Say about Disclosure of Genetic Information to Relatives?" Journal of Health Care Law and Policy 1, no. 2 (1998): 373-90.
81. Caryn Lerman et al., "Family Disclosure in Genetic Testing for Cancer Susceptibility: Determinants and Consequences, " Journal of Health Care Law and Policy 1, no. 2 (1998): 353-72.
82. Allen Buchanan, "Ethical Responsibilities of Patients and Clinical Geneticists, " Journal of Health Care Law and Policy 1, no. 2 (1998): 391-420.
83. Ibid., 394.
84. Ibid., 401-2.
85. Ibid., 402.
86. Ibid., 403-6.