If I am only for myself, what am I? A communitarian look at the privacy stalemate

American Journal of Law and Medicine

Volumn 25, Issue 2-3, 1999, Pages 203-231

  Rubinstein, Helena Gail ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

EMPLOYMENT; GENOME; HEALTH CARE PLANNING; HEALTH CARE POLICY; HEALTH INSURANCE; HEALTH SERVICE; LAW; MANAGED CARE; MEDICAL INFORMATION; MEDICAL RECORD; PRIVACY; REVIEW;

AUTONOMY; BIOMEDICAL RESEARCH; COMMON GOOD; COMMUNITARIANISM; DEPARTMENT OF HEALTH AND HUMAN SERVICES; FEDERAL GOVERNMENT; GOVERNMENT REGULATION; HEALTH CARE AND PUBLIC HEALTH; LEGAL APPROACH; LEGAL RIGHTS; OBLIGATIONS TO SOCIETY; PROFESSIONAL PATIENT RELATIONSHIP; RIGHTS; RISKS AND BENEFITS; TRUST; U.S. CONGRESS; UNITED STATES;

BIOMEDICAL RESEARCH; CONFIDENTIALITY; CONFLICT (PSYCHOLOGY); DISCLOSURE; FEDERAL GOVERNMENT; GOVERNMENT REGULATION; HUMANS; INSURANCE CLAIM REPORTING; MEDICAL RECORDS; NEGOTIATING; PATIENT ADVOCACY; PERSONAL AUTONOMY; PRIVACY; RISK ASSESSMENT; SOCIAL JUSTICE; SOCIAL RESPONSIBILITY; TRUST; UNITED STATES;

EID: 0032779641     PISSN: 00988588     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (78)

1. See WILLIAM W. LOWRANCE, DEPARTMENT OF HEALTH AND HUMAN SERVICES, PRIVACY AND HEALTH RESEARCH: A REPORT TO THE SECRETARY OF HEALTH AND HUMAN SERVICES § 6 (May 1997), (visited Apr. 9, 1999) 〈http://www.aspe.os.dhhs.gov/datacncl/PHR6.htm〉.
2. See Richard C. Turkington, Medical Record Confidentiality, Law, Scientific Research and Data Collection in the Information Age, 25 J.L. MED. & ETHICS 113, 115 (1997).
3. Senator Edward M. Kennedy, Statement on the Introduction of the Medical Information Privacy and Security Act (Mar. 10, 1999).
4. Atomism is the idea that people are "fully formed and self-sufficient individuals outside of society who assume social and political relationships and obligations only in order to further . . . [their] own predetermined (exogenous) interests and values." Stephen A. Gardbaum, Law, Politics, and the Claims of Community, 90 MICH. L. REV. 685, 692 (1992).
5. See David H. Flaherty, The Right to Privacy One Hundred Years Later: On the Utility of Constitutional Rights to Privacy and Data Protection, 41 CASE W. L. REV. 831, 832 (1991).
6. See DAVID SEIPP, THE RIGHT TO PRIVACY IN AMERICAN HISTORY 102-13 (1978); Note, The Right to Privacy in Nineteenth Century America, 94 HARV. L. REV. 1892, 1892-96 (1981).
7. See DAVID SEIPP, THE RIGHT TO PRIVACY IN AMERICAN HISTORY 102-13 (1978); Note, The Right to Privacy in Nineteenth Century America, 94 HARV. L. REV. 1892, 1892-96 (1981).
8. Samuel D. Warren & Louis D. Brandeis, The Right to Privacy, 4 HARV. L. REV. 193, 193, 205 (1890). Justice Brandeis dissenting in Olmstead v. United States, a wiretapping case, stated that "[the makers of our Constitution] conferred, as against the government, the right to be let alone - the most comprehensive of rights and the right most valued by civilized men." 277 U.S. 438, 478 (1928).
9. See Warren & Brandeis, supra note 22, at 206.
10. See Roe v. Wade, 410 U.S. 113 (1973) (enlarging the right of individuals to privacy in reproductive matters to include abortions); Eisenstadt v. Baird, 405 U.S. 438 (1972) (holding that the right of privacy inheres in individuals, not marital relationships alone); Griswold v. Connecticut, 381 U.S. 479 (1965) (establishing a privacy right of married persons to control reproductive decisions).
11. The Fourth Amendment to the U.S. Constitution guarantees "the right of the people to be secure in their persons, houses, papers and effects." U.S. CONST. amend. IV. However, the Fourth Amendment, and cases thereunder, did not establish a broad right to privacy. It only prevented government officials from unlawfully intruding into an individual's home or personal property, and left private citizens to do so at will.
12. The evidentiary privilege that prohibits physicians from giving testimony adverse to the interests of their patients is a modern embodiment of this principle.
13. Barbara Flood, The Emotionality of Privacy, 23 AM. SOC'Y FOR INFORMATION SCI. 7 (1997). Indeed, what motivated Samuel Warren to take up the issue was the fact that Warren, a Boston Brahmin, found his social life become grist for the mills of the tabloid press, a fact he found to be most disagreeable. See Robert C. Post, The Social Foundations of Privacy: Community & Self in the Common Law Tort, 77 CALIF. L. REV. 957, 958-59 (1989).
14. Barbara Flood, The Emotionality of Privacy, 23 AM. SOC'Y FOR INFORMATION SCI. 7 (1997). Indeed, what motivated Samuel Warren to take up the issue was the fact that Warren, a Boston Brahmin, found his social life become grist for the mills of the tabloid press, a fact he found to be most disagreeable. See Robert C. Post, The Social Foundations of Privacy: Community & Self in the Common Law Tort, 77 CALIF. L. REV. 957, 958-59 (1989).
15. See Robert J. Blendon et al., Data Watch: Who Has the Best Health Care System? A Second Look, 14 HEALTH AFF. 220.; see also Equifax-Harris Consumer Privacy Survey (1994) (finding public distrust to be rising, and noting a steady rise over the previous 15 years); Joseph S. Nye, Jr., Introduction: The Decline of Confidence in Government, in WHY PEOPLE DON'T TRUST GOVERNMENT 1, 1-2 (Joseph S. Nye, Jr. et al. eds., Harvard Univ. Press, 1997).
16. See Robert J. Blendon et al., Data Watch: Who Has the Best Health Care System? A Second Look, 14 HEALTH AFF. 220.; see also Equifax-Harris Consumer Privacy Survey (1994) (finding public distrust to be rising, and noting a steady rise over the previous 15 years); Joseph S. Nye, Jr., Introduction: The Decline of Confidence in Government, in WHY PEOPLE DON'T TRUST GOVERNMENT 1, 1-2 (Joseph S. Nye, Jr. et al. eds., Harvard Univ. Press, 1997).
17. See Robert J. Blendon et al., Data Watch: Who Has the Best Health Care System? A Second Look, 14 HEALTH AFF. 220.; see also Equifax-Harris Consumer Privacy Survey (1994) (finding public distrust to be rising, and noting a steady rise over the previous 15 years); Joseph S. Nye, Jr., Introduction: The Decline of Confidence in Government, in WHY PEOPLE DON'T TRUST GOVERNMENT 1, 1-2 (Joseph S. Nye, Jr. et al. eds., Harvard Univ. Press, 1997).
18. See Richard Morin & Dan Balz, Reality Check, The Politics of Mistrust: Americans Losing Trust in Each Other and Institutions, WASH. POST, Jan. 28, 1996, at A1.
19. Id. at A6.
20. See Melton, supra note 34, at 1466.
21. George J. Annas, Privacy Rules for DNA Databanks, 270 JAMA 2346, 2346 (1993).
22. See, e.g., DOROTHY NELKIN & LAURENCE TANCREDI, DANGEROUS DIAGNOSTICS: THE SOCIAL POWER OF BIOLOGIC INFORMATION 6-7 (1989).
23. Mark A. Rothstein, The Law of Medical and Genetic Privacy in the Workplace, in GENETIC SECRETS: PROTECTING PRIVACY AND CONFIDENTIALITY IN THE GENETIC ERA 281 (Mark A. Rothstein ed., 1997).
24. Id. at 281-82.
25. See id. at 282.
26. See Ellyn E. Spragins, What Are They Hiding? HMOs are getting more secretive about quality, NEWSWEEK, Mar. 1, 1999, at 74, 74.
27. See Rybowski, supra note 61, at 3.
28. ETZIONI, supra note 13, at 143.
29. CALIFORNIA HEALTH CARE FOUNDATION, MEDICAL PRIVACY AND CONFIDENTIALITY SURVEY SUMMARY AND OVERVIEW (visited Jan. 28, 1999) 〈http://www.chcf.org/confernce/survey.pdf〉.
30. See Phyllis Freeman & Anthony Robbins, The Health Data Privacy Debate, reprinted in AFFILIATED HEALTH INFORMATION NETWORKS OF NEW ENGLAND, 1998 PUBLIC MEETING REPORT - DEVELOPING THE CONTENT AND TECHNOLOGY OF THE FUTURE 56-57 (1998); see also Alpert, supra note 54, at 19-21.
31. See Phyllis Freeman & Anthony Robbins, The Health Data Privacy Debate, reprinted in AFFILIATED HEALTH INFORMATION NETWORKS OF NEW ENGLAND, 1998 PUBLIC MEETING REPORT - DEVELOPING THE CONTENT AND TECHNOLOGY OF THE FUTURE 56-57 (1998); see also Alpert, supra note 54, at 19-21.
32. See Freeman & Robbins, supra note 67, at 57.
33. See Lawrence O. Gostin, The Public Health Information Infrastructure: A National Review of the Law on Health Information Privacy, 275 JAMA 1921, 1921 (1996).
34. See Gostin, supra note 32, at 2491; see also OFFICE OF TECHNOLOGY ASSESSMENT, PROTECTING PRIVACY IN COMPUTERIZED MEDICAL INFORMATION 193 (1993) (containing the American
35. See Gostin, supra note 32, at 2491; see also OFFICE OF TECHNOLOGY ASSESSMENT, PROTECTING PRIVACY IN COMPUTERIZED MEDICAL INFORMATION 193 (1993) (containing the American
36. Denise Nagel, Files or Fishbowls, WORCESTER MED. 6, 12 (Winter 1988).
37. See Statement of Harding, supra note 11; Statement of Brunswick, supra note 15. Also, the Consumer Coalition for Health Privacy, a coalition of consumer, health care provider and disability groups based at the Institute for Health Care Research and Policy at Georgetown University, stated "Additional protections may be necessary for highly sensitive information." See Health Privacy Project - Consumer Coalition (visited May 5, 1999) 〈http://www.healthprivacy.org/coalition/ statementmission.shtml〉.
38. See RECOMMENDATIONS OF THE SECRETARY, supra note 77 (stating that the intent is to provide a minimum floor under federal law for all types of information, but recognizing that existing state laws providing protections for certain information remain in place and leaving open the possibility of working with Congress on areas of information identified as "particularly sensitive" in the future).
39. See Statement of Breitenstein, supra note 83.
40. See id.
41. See Protecting Our Medical Information, Rights, Responsibilities and Risks, Hearings Before the Senate Comm. on Labor and Human Resources, 105th Cong. (Oct. 28, 1997) (statement of Donald J. Palmisano, M.D., J.D., on behalf of the American Medical Association) (visited Apr. 14, 1999) 〈http://www.senate.gov/~labor/hear/1028hrg/ama.htm〉 [hereinafter Statement of Palmisano]; Statement of Harding, supra note 11.
42. See Statement of Harding, supra note 11. This suggestion is likely to face vigorous opposition from hospitals and HMOs, which fear that missing information in a patient's file will create liability for treatment errors. See Medical Records Confidentiality in a Changing Health Care Environment Hearings Before the S. Comm. on Health, Education, Labor & Pensions, 106th Cong. (Apr. 27, 1999) (Statement of the American Association of Health Plans) http://www.aahp.org/services/govemment&advocacy/policy/testimony/ 4_27tes2.htm (visited June 2, 1999).
43. See Statement of Brunswick, supra note 15.
44. See id.
45. See, e.g., Confidentiality of Individually-Indentifiable Health Information Before the S. Comm. on Labor and Human Resources, 105th Cong. (Feb. 24, 1998) (Statement of Janlori Goldman, Director,
46. See Statement of Gabriel, supra note 152.
47. See Woodward, supra note 102, at 94. She cites Hans Jonas for this proposition. However, Jonas's work, Philosophical Reflections on Experimenting with Human Subjects, 98 DAEDELUS 219 (1969) may be inapposite to the instant consideration. In 1969, when his work was published, Americans were still coming to terms with the ghastly human subject experiments performed during the Holocaust on captive populations, and were learning about other inappropriate experiments performed on vulnerable populations in the United States.
48. See Woodward, supra note 102, at 94. She cites Hans Jonas for this proposition. However, Jonas's work, Philosophical Reflections on Experimenting with Human Subjects, 98 DAEDELUS 219 (1969) may be inapposite to the instant consideration. In 1969, when his work was published, Americans were still coming to terms with the ghastly human subject experiments performed during the Holocaust on captive populations, and were learning about other inappropriate experiments performed on vulnerable populations in the United States.
49. William R. Lund, Politics, Virtue, and the Right To do Wrong: Assessing the Communitarian Critique of Rights, J. SOC. PHIL., Winter 1997, at 101, 103 (explaining the communitarian view of liberalism). For a strong defense of rights theory, see RONALD DWORKIN, TAKING RIGHTS SERIOUSLY (1977).
50. William R. Lund, Politics, Virtue, and the Right To do Wrong: Assessing the Communitarian Critique of Rights, J. SOC. PHIL., Winter 1997, at 101, 103 (explaining the communitarian view of liberalism). For a strong defense of rights theory, see RONALD DWORKIN, TAKING RIGHTS SERIOUSLY (1977).
51. JOHN RAWLS, A THEORY OF JUSTICE 3-4 (1971) (providing a view of society premised on the concept that individual rights override communal ends).
52. Id. at 92-93.
53. MICHAEL SANDEL, LIBERALISM AND THE LIMITS OF JUSTICE 64 (2d ed. 1982).
54. Lund, supra note 177, at 103 (citing Michael Sandel, Morality and the Liberal Ideal, NEW REPUBLIC, May 7, 1984, at 15).
55. Lund, supra note 177, at 103 (citing Michael Sandel, Morality and the Liberal Ideal, NEW REPUBLIC, May 7, 1984, at 15).
56. 3 JOEL FEINBERG, THE MORAL LIMITS OF THE CRIMINAL LAW 47 (1986).
57. SANDEL, supra note 180, at 64.
58. Frederick Schauer, Community, Citizenship, and the Search For National Identity, 84 MICH. L. REV. 1504, 1504 (1986).
59. Id.
60. See, e.g. Carol Gentry, Breaches of Medical Records A Tough Condition to Treat, WALL ST. J., May 5, 1999, at NE1 (describing Maine's attempt to implement a medical records confidentiality law). Among the unintended consequences resulting from the law were that hospitals would not tell family members that their loved ones were in the hospital or provide information on their condition, florists could not deliver flowers, clergymen were unable to visit congregants and pharmacists would not release prescription medications to anyone but the intended patient, even if that patient was bedridden. See id. Shortly after the law took effect, the state legislature reconsidered the legislation and postponed its effective date. See id. Senator Bennett's bill addresses some of these deficiencies; it affirmatively authorizes the release of patients' names, general location and general condition to any person unless the patient has previously objected to the release of such information. See S. 881 § 204(b).
61. See, e.g. Carol Gentry, Breaches of Medical Records A Tough Condition to Treat, WALL ST. J., May 5, 1999, at NE1 (describing Maine's attempt to implement a medical records confidentiality law). Among the unintended consequences resulting from the law were that hospitals would not tell family members that their loved ones were in the hospital or provide information on their condition, florists could not deliver flowers, clergymen were unable to visit congregants and pharmacists would not release prescription medications to anyone but the intended patient, even if that patient was bedridden. See id. Shortly after the law took effect, the state legislature reconsidered the legislation and postponed its effective date. See id. Senator Bennett's bill addresses some of these deficiencies; it affirmatively authorizes the release of patients' names, general location and general condition to any person unless the patient has previously objected to the release of such information. See S. 881 § 204(b).
62. See, e.g. Carol Gentry, Breaches of Medical Records A Tough Condition to Treat, WALL ST. J., May 5, 1999, at NE1 (describing Maine's attempt to implement a medical records confidentiality law). Among the unintended consequences resulting from the law were that hospitals would not tell family members that their loved ones were in the hospital or provide information on their condition, florists could not deliver flowers, clergymen were unable to visit congregants and pharmacists would not release prescription medications to anyone but the intended patient, even if that patient was bedridden. See id. Shortly after the law took effect, the state legislature reconsidered the legislation and postponed its effective date. See id. Senator Bennett's bill addresses some of these deficiencies; it affirmatively authorizes the release of patients' names, general location and general condition to any person unless the patient has previously objected to the release of such information. See S. 881 § 204(b).
63. See supra notes 158-62 and accompanying text.
64. Donald L. Beschle, The Role Of Courts In The Debate On Assisted Suicide: A Communitarian Approach, 9 NOTRE DAME J. L., ETHICS, & PUB. POL'Y 367, 389 (1995).
65. See ROACH & ASPEN HEALTH LAW CENTER, supra note 34, at 147-48.
66. See, e.g., Alaska Stat. 18.065.087 (1998), which authorizes the Department of Public Safety to maintain a central registry of sex offenders and to make the following information about those offenders available to the public: name, address, photograph, place of employment, date of birth, crime for which convicted, date of conviction, place and court of conviction and lengthy of sentence. This information is posted on the Internet at Sex Offender Registration Report (visited May 24, 1999) 〈http://www.dps.state.ak.us/sorcr〉.
67. See Jane Mansbridge, Social and Cultural Causes of Dissatisfaction with U.S. Government, in WHY PEOPLE DON'T TRUST GOVERNMENT 134, 134 (Joseph S. Nye, Jr. et al. eds.).
68. Id.
69. See id. at 145-46.
70. Id. at 146.
71. See Beschle, supra note 188, at 405.
72. See Mansbridge, supra note 1921, at 152.
73. Beschle, supra note 188, at 405.
74. See Rosa Eckstein, Comment, Towards a Communitarian Theory of Responsibility: Bearing the Burden for the Unintended, 45 UNIV. MIAMI L. REV. 843, 855, 864-878, 907-09 (1991) (arguing that a rejection of liberalist jurisprudence in employment discrimination in favor of a communitarian definition of responsibility will enable plaintiffs to prevail more often, by shifting the inquiry away from intent, which is by nature individualistic, toward an inquiry that includes an examination of the structural problems that may contribute to the discriminatory environment).
75. It has been suggested by privacy advocates and some members of Congress that the Common Rule be extended to privately funded research involving the use of health data. See Loewenberg, supra note 43, at 4. It has alternatively been suggested that alternative arrangements between data providers and data users, such as confidentiality policies or confidentiality agreements, may provide adequate protection with less burden. Id. at 5. The author believes that each of these positions has merit and should be given full consideration before Congress.
76. See id. at 4-5.
77. See Freeman & Robbins, supra note 67, at 60, 73.
78. Indeed, Amitai Etzioni, widely regarded as the father of communitarian thinking, uses a similar framework in his recent article on resolving the privacy stalemate. See ETZIONI, supra note 13, at 15. Etzioni suggests that those who are directly responsible for treating patients should have broad access to identified health information while those who seek to use data simply for profit, such as marketing interests, should have little or no access. See id. at 19, 20. Health researchers fall somewhere in the middle. See id. Etzioni proposes a system under which each individual would be issued a Unique Personal Identifier (UPI) number. See id. at 20-21. Data given to researchers would be encrypted, in most cases only with the UPI. See id. This, he believes, would answer the objection of the research community that arbitrarily encrypted data precludes researchers from tracking patients' health conditions over time. See id. Researcher access to additional patient identification data would only be available on a showing of critical need and would be edited to preclude further identification of the subject. See id. This paper does not endorse Etzioni's approach. Health researchers work within an ethical framework that is similar to those who provide patient care. To the extent that researchers need any further incentive to protect the confidentiality of research subjects, it can be found in the sanctions language of each of the major privacy bills. Etzioni's proposal would unjustifiably penalize the health research community for indiscretions committed by unscrupulous individuals and other communities of