Mission creep: Public health surveillance and medical privacy

Boston University Law Review

Volumn 87, Issue 2, 2007, Pages 347-395

  Mariner, Wendy K ^a,b  

^a BOSTON UNIVERSITY   (United States)

^b BOSTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

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EID: 34548263149     PISSN: 00068047     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Conference Paper

References (304)

1. City of Newark v. J.S., 652 A.2d 265, 271 (N.J. Super. Ct. Law Div. 1993)
2. TECH. & PRIVACY ADVISORY COMM., U.S. DEP'T OF DEF., SAFEGUARDING PRIVACY IN THE FIGHT AGAINST TERRORISM, at iii (2004) [hereinafter SAFEGUARDING PRIVACY], available at http://www.cdt.org/security/usapatriot/20040300tapac.pdf.
3. Id. at 48-49 (footnote omitted).
4. Id. at 49.
5. See id. at 39-40.
6. For a description of the industry's post-9/11 development, see generally ROBERT O'HARROW, JR., NO PLACE TO HIDE (2005);
7. Chris Jay Hoofnagle, Big Brother's Little Helpers: How ChoicePoint and Other Commercial Data Brokers Collect and Package Your Data for Law Enforcement, 29 N.C. J. INT'L L. & COM. REG. 595 (2004).
8. See generally DANIEL J. SOLOVE, THE DIGITAL PERSON: TECHNOLOGY AND PRIVACY IN THE INFORMATION AGE (2004);
9. Marc Rotenberg, Privacy and Secrecy After September 11, 86 MINN. L. REV. 1115 (2002);
10. Daniel J. Solove, Digital Dossiers and the Dissipation of Fourth Amendment Privacy, 75 S. CAL. L. REV. 1083 (2002);
11. Kathleen M. Sullivan, Under a Watchful Eye: Incursions on Personal Privacy, in THE WAR ON OUR FREEDOMS: CIVIL LIBERTIES IN AN AGE OF TERRORISM 128 (Richard C. Leone & Greg Anrig, Jr. eds., 2003).
12. See generally DAVID COLE, ENEMY ALIENS: DOUBLE STANDARDS AND CONSTITUTIONAL FREEDOMS IN THE WAR ON TERRORISM (2003);
13. David Luban, Eight Fallacies About Liberty and Security, in HUMAN RIGHTS IN THE 'WAR ON TERROR' 242 (Richard Ashby Wilson ed., 2005).
14. See James Risen & Eric Lichtblau, Bush Lets U.S. Spy on Callers Without Courts, N.Y. TIMES, Dec. 16, 2005, at Al. The American Bar Association House of Delegates, reacting to the news story as well as an internal task force report, voted overwhelmingly to urge the Bush administration to comply with the Foreign Intelligence Surveillance Act (FISA), and called on Congress to investigate the domestic surveillance program. ABA TASK FORCE ON DOMESTIC SURVEILLANCE IN THE FIGHT AGAINST TERRORISM, REPORT WITH RECOMMENDATIONS 1-5 (2006), available at http://www.abanet.org/op/greco/memos/aba_house302-0206.pdf.
15. Public reaction may be primed by earlier reports that millions of records of identifiable data had been lost by or stolen from credit and background checking companies such as ChoicePoint and Bank of America, as well from educational institutions such as Boston College and Tufts University. See, e.g., Bruce Mohl, Breach in Security Reaches 2d Credit Firm, BOSTON GLOBE, Apr. 14, 2005, at El (reporting on security breaches at HSBC North America, Boston College, Tufts University, and Bank of America);
16. Tom Zeller Jr., Breach Points Up Flaws in Privacy Laws, N.Y. TIMES, Feb. 24, 2005, at C1 (reporting on the ChoicePoint breach). Congress has introduced bills to impose stricter standards of privacy and security on such companies.
17. See Mohl, supra (reporting on two pending bills that would create a notification requirement);
18. Zeller, supra (reporting on bills submitted by Senator Dianne Feinstein (D-Cal.) that would create a nationwide notification requirement). In 2006, ChoicePoint settled Federal Trade Commission charges (of violating consumer rights and privacy laws) by paying a $10 million civil fine and $5 million for consumer redress.
19. See Stipulated Final Judgment and Order for Civil Penalties, Permanent Injunction, and Other Equitable Relief at 4, 17, United States v. ChoicePoint Inc., No. L06-CV-0198 (N.D. Ga. Feb. 15, 2006), available at http://www.ftc.gov/os/caselist/choicepoint/choicepoint.htm. ChoicePoint, which began by keeping insurance claim records, has introduced new privacy protections.
20. Gary Rivlin, Keeping Your Enemies Close, N.Y. TIMES, NOV. 12, 2006, §3, at 1. Additionally, the Department of Homeland Security plans to increase cooperation between federal intelligence operations and local law enforcement.
21. Robert Block, Fighting Terrorism by Sharing Data, WALL ST. J., Oct. 16, 2006, at A6.
22. Michigan adopted the first such compulsory reporting law in 1883. JAMES A. TOBEY, PUBLIC HEALTH LAW 133 (3d ed. 1947). By the mid-twentieth century, all states had adopted laws requiring physicians (and often hospitals, laboratories, and other health facilities) to report "notifiable," "communicable," or "dangerous" diseases to the state or local health department. Id.
23. See generally JAMES A. MORONE, HELLFIRE NATION: THE POLITICS OF SIN IN AMERICAN HISTORY (2003) (describing how the same groups have been blamed for the spread of disease, violence, laziness (unwillingness to work), and sexual depravity throughout U.S. history).
24. Turn of the century physicians initially objected to reporting on their paying patients, believing it would violate physician-patient confidentiality or stigmatize their medical practice. However, most reported on charity patients. See C.-E.A. WINSLOW, THE LIFE OF HERMANN M. BIGGS: PHYSICIAN AND STATESMAN OF THE PUBLIC HEALTH 134 (1929).
25. See, e.g., MATERNAL & CHILD HEALTH BUREAU, U.S. DEP'T OF HEALTH & HUMAN SERVS., NEWBORN SCREENING: TOWARD A UNIFORM SCREENING PANEL AND SYSTEM 7-11 (2005), available at http://mchb.hrsa.gov/screening;
26. CDC, Nationally Notifiable Diseases Surveillance System, http://www.cdc.gov/epo/dphsi/nndsshis.htm (last visited Apr. 1, 2007).
27. See generally HOMELAND SEC. COUNCIL, NATIONAL STRATEGY FOR PANDEMIC INFLUENZA: IMPLEMENTATION PLAN (2006), available at http://www.whitehouse.gov/homelano/nspi_implementation.pdf. The proposed Bioterrorism Act of 2005 (formally titled "Protecting America in the War on Terror Act of 2005") would "establish and maintain a national electronic surveillance program" that goes beyond detecting a bioterror attack to creating a general health database for studying health trends. S. 3, 109th Cong. § 172 (2005). The Centers for Disease Control and Prevention (CDC) has already developed the National Electronic Disease Surveillance System (NEDSS), intended to bring all kinds of reporting systems into one national integrated electronic database.
28. See generally CDC, National Electronic Disease Surveillance System, http://www.cdc.gov/ nedss (last visited Apr. 1, 2007).
29. N.Y., N.Y., HEALTH CODE art. 13, § 13.04 (Dec. 14, 2005) (effective Jan. 15, 2006).
30. For a discussion of the regulation, its rationale, and possible legal challenges, see generally Wendy K. Mariner, Medicine and Public Health: Crossing Legal Boundaries, 10 J. HEALTH CARE L. & POL'Y 121 (2007).
31. Stephen B. Thacker, Historical Development, in PRINCIPLES AND PRACTICE OF PUBLIC HEALTH SURVEILLANCE 1, 6 (Steven M. Teutsch & R. Elliott Churchill eds, 2d ed. 2000);
32. see abo TRUST FOR AMERICA'S HEALTH, IMPROVING CANCER TRACKING TODAY SAVES LIVES TOMORROW: DO STATES MAKE THE GRADE? 1-4 (2003), available at http://healthyamericans.org/state/cancergrade/pdf/FullReport.pdf (describing the value of cancer data for research).
33. SAFEGUARDING PRIVACY, supra note 2, at 48.
34. See generally Stephen B. Thacker & Joanna Buffington, Applied Epidemiology for the 21st Century, 30 INT'L J. EPIDEMIOLOGY 320 (2001) (arguing for the expanded application of epidemiological research to improve public health).
35. Many statutes use the term "communicable" as a synonym for "contagious" to emphasize person-to-person transmission of infection and, by implication, to exclude application to other "infectious" diseases. "Infectious" diseases include any disease that can be transmitted to a human being from any source, whether human, animal, or environmental. Communicable or contagious diseases are a subcategory of infectious diseases that can only be transmitted from one human to another. David Heymann, Infectious Agents, in 1 OXFORD TEXTBOOK OF PUBLIC HEALTH 171 (Roger Detels et al. eds, 4th ed. 2002).
36. See CDC, 50 MORBIDITY & MORTALITY WKLY. REP, NO. RR-13, UPDATED GUIDELINES FOR EVALUATING PUBLIC HEALTH SURVEILLANCE SYSTEMS 2 (2001) [hereinafter CDC, UPDATED GUIDELINES], available at http://www.cdc.gov/ mmwr/PDF/rr/rr5013.pdf ("Public health surveillance is the ongoing, systematic collection, analysis, interpretation, and dissemination of data regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health.").
37. See generally Guthrie S. Birkhead & Christopher M. Maylahn, State and Local Public Health Surveillance, in PRINCIPLES AND PRACTICE OF PUBLIC HEALTH SURVEILLANCE, supra note 18, at 253.
38. See generally Kumnuan Ungchusak, Principles of Outbreak Investigation, in 2 OXFORD TEXTBOOK OF PUBLIC HEALTH, supra note 21, at 529.
39. See, e.g., City of Newark v. J.S., 652 A.2d 265, 267-68 (N.J. Super. Ct. Law Div. 1993) (ordering involuntary hospitalization of a homeless man who could not avoid exposing the public to his active, contagious tuberculosis).
40. See Jew Ho v. Williamson, 103 F. 10, 24 (C.C.N.D. Cal. 1900) (striking down a quarantine for plague in San Francisco on equal protection grounds because it confined only Chinese inhabitants and also because it arbitrarily confined exposed and non-exposed people in the same area);
41. Wong Wai v. Williamson, 103 F. 1, 9-10 (C.C.N.D. Cal. 1900) (same). For a history of the epidemic, see generally MARILYN CHASE, THE BARBARY PLAGUE: THE BLACK DEATH IN VICTORIAN SAN FRANCISCO (2003). For a history of the quarantine of immigrants to New York City for cholera,
42. see generally HOWARD MARKEL, QUARANTINE!: EAST EUROPEAN JEWISH IMMIGRANTS AND THE NEW YORK CITY EPIDEMICS OF 1892 (1997). Quarantine of large populations has almost never prevented an epidemic, and is not generally recommended today.
43. Joseph Barbera et al., Large-Scale Quarantine Following Biological Terrorism in the United States, 286 JAMA 2711, 2715-16 (2001). A contemporary example is China's threat of quarantine to prevent the spread of SARS in 2003, where public fear of the quarantine led hundreds of thousands to flee Beijing.
44. See Joseph Kahn, Quarantine Set in Beijing Areas To Fight SARS, N.Y. TIMES, Apr. 25, 2003, at Al.
45. See generally INST, FOR BIOETHICS, HEALTH POLICY & LAW, UNIV. OF LOUISVILLE SCH. OF MED, QUARANTINE AND ISOLATION: LESSONS LEARNED FROM SARS (2003), available at http://mmrs.fema.gov/PublicDocs/2003-ll_SARS_Quarantine_Rpt. pdf.
46. The Marine Hospital Service was originally created to care for merchant seaman. An Act for the Relief of Sick and Disabled Seamen, ch. 77, 1 Stat. 605 (1798). The Quarantine Act of 1878 gave the Marine Hospital Service the power to quarantine ships arriving in U.S. ports, to conduct medical examinations of immigrants, and to report the name and destinations of any ships leaving infected ports. An Act To Prevent the Introduction of Contagious or Infectious Diseases into the United States, ch. 66, 20 Stat. 37 (1878). By 1912, the year in which the Marine Hospital Service was renamed the Public Health Service, Congress had authorized field studies to investigate the "diseases of man and ... the pollution of navigable streams." RALPH C. WILLIAMS, THE UNITED STATES PUBLIC HEALTH SERVICE, 1798-1950, at 167 (1951);
47. see also FITZHUGH MULLAN, PLAGUES AND POLITICS: THE STORY OF THE UNITED STATES PUBLIC HEALTH SERVICE 58 (1989). Executive orders still list quarantinable diseases in order to protect national ports from contagion. President Bush added anthrax to the list in 2001, then SARS in 2003, and then "[i]nfluenza caused by novel or reemergent influenza viruses that are causing, or have the potential to cause, a pandemic," in 2005. Exec. Order No. 13,295, 3 C.F.R. 220 (2004), amended by Exec. Order No. 13,375, 3 C.F.R. 162 (2006) (relying on the authority granted to the President by the Public Health Service Act § 361, 42 U.S.C § 264(b) (2000)).
48. See, e.g., Michael A. Stoto, Population Health Monitoring, in HEALTH STATISTICS: SHAPING POLICY AND PRACTICE TO IMPROVE THE POPULATION'S HEALTH 317, 322-24 (Daniel J. Friedman et al. eds., 2005).
49. See Sandra Roush et al. Mandatory Reporting of Diseases and Conditions by Health Care Professionals and Laboratories, 281 JAMA 164, 164 (1999).
50. See Thacker, supra note 18, at 1-16;
51. Steven B. Thacker & Donna F. Stroup, Future Directions for Comprehensive Public Health Surveillance and Health Information Systems in the United States, 140 AM. J. EPIDEMIOLOGY 383, 384 (1994). This shift to public health surveillance follows a shift away from communicable disease prevention to personal health promotion. Attention to health promotion may date from 1974, when Canada published the landmark Lalonde Report.
52. See generally MARC LALONDE, A NEW PERSPECTIVE ON THE HEALTH OF CANADIANS (1974), available at http://www.hc-sc.gc.ca/hcs-sss/alt_formats/hpbdgps/pdf/pubs/ 1974-lalonde/lalonde_e.pdf.
53. U.S. Surgeon General Julius Richmond published a similar report, Healthy People, in 1979, initiating the periodic review of Americans' overall health status and setting goals for improvement.
54. See generally U.S. DEP'T OF HEALTH & HUMAN SERVS, HEALTHY PEOPLE 2010 (2d ed. 2000), available at http://www.health.gov/healthypeople/document.
55. See COMM. ON EMERGING MICROBIAL THREATS TO HEALTH, INST. OF MED., EMERGING INFECTIONS: MICROBIAL THREATS TO HEALTH IN THE UNITED STATES 151-53 (1992) (commenting on the elimination of diseases like smallpox and the reduced risk of other contagious diseases like measles and tuberculosis in the twentieth century).
56. See Arialdi M. Minino et al. Deaths: Preliminary Data for 2004, NAT'L VITAL STAT. REP., June 28, 2006, at 1, 4 (reporting data on the major causes of death in the United States, of which the top three are heart disease, cancers, and stroke).
57. ALAN PETERSEN & DEBORAH LUPTON, THE NEW PUBLIC HEALTH, at i (1996) ("The new public health takes as its foci the categories of 'population' and 'the environment,' conceived of in their widest sense to include psychological, social and physical elements.");
58. Wendy K. Mariner, Law and Public Health: Beyond Emergency Preparedness, 38 J. HEALTH L. 247, 252-54 (2005) (arguing that the public health field may pay increasing attention to the "social determinants of health" in the future);
59. see also Elizabeth Fee, The Origins and Development of Public Health in the United States, in 1 OXFORD TEXTBOOK OF PUBLIC HEALTH 35, 45-46 (Roger Detels et al. eds., 3d ed. 1997) (discussing the "epidemiological transition" of the postwar era).
60. See Stephen B. Thacker et al. Public Health Surveillance for Chronic Conditions: A Scientific Basis for Decisions, 14 STAT. MED. 629, 629-30 (1995).
61. A pilot study looking at surveillance programs in eight states (Arkansas, Colorado, Florida, Maine, Michigan, New York, Oregon, and Wisconsin) found that surveillance data was most commonly used to compile statistics for the CDC Emilie Curry, Public Health Surveillance Data Survey 13 & fig. 7 (2004) (unpublished manuscript, on file with author).
62. In case reporting, physicians (and others) report their diagnoses to a local or state health department. Reports were first made by sending a postcard; more detailed forms followed. Cases requiring urgent intervention are reported by telephone. Now, electronic transmission of diagnoses is beginning. Nevertheless, the basic structure of case reporting systems today differs little from the original design, even though details like reporting forms and available medications have evolved. See Stoto, supra note 27, at 321.
63. See generally Julie A. Pavlin et al. Innovative Surveillance Methods for Rapid Detection of Disease Outbreaks and Bioterrorism: Results of an Interagency Workshop on Health Indicator Surveillance, 93 AM. J. PUB. HEALTH 1230 (2003). The National Health Interview Survey has been conducted periodically since the mid-twentieth century, under the auspices of the National Center for Health Statistics. For an example of a more targeted study,
64. see Edward H. Kaplan & Ron Brookmeyer, Snapshot Estimators of Recent HIV Incidence Rates, 47 OPERATIONS RES. 29, 31-35 (1999) (developing mathematical models of the incidence of HIV infection and then applying the models to data collected by government agencies).
65. The information can also be used to identify specific populations in need of health services. Smallpox was eradicated in the United States by identifying areas where people had not been immunized and making concerted efforts to persuade them to get the vaccine. Ruth L. Berkelman et al. Public Health Surveillance, in 2 OXFORD TEXTBOOK OF PUBLIC HEALTH, supra note 21, at 759, 760.
66. Ryan White Comprehensive AIDS Resources Emergency Act of 1990, Pub. L. No. 101-381, 104 Stat. 576 (codified as amended in scattered sections of 42 U.S.C.), amended by Ryan White HIV/AIDS Treatment Modernization Act of 2006, Pub. L. No. 109-415, 120 Stat. 2767.
67. Public health surveillance programs might be analogized to fire departments. Although fires are rare events, firefighters must be ready to respond on a moment's notice to control the fires that do occur and to prevent a conflagration. Firefighters find other things to do while waiting for a fire, such as inspecting fire alarms and attending to emergencies other than fires. Epidemics of communicable disease are rare events in the United States, but those that do occur often require a large effort that could not be mounted from scratch. Public health programs provide a ready infrastructure. In down times, public health surveillance programs perform other tasks, such as statistical analyses of disease trends and research about the causes and consequences of diseases.
68. U.S. GEN. ACCOUNTING OFFICE, NO. GAO-01-126SP, RECORD LINKAGE AND PRIVACY: ISSUES IN CREATING NEW FEDERAL RESEARCH AND STATISTICAL INFORMATION 1 (2001), available at http://www.gao.gov/new.items/d01126sp.pdf (defining record linkage as "a computer-based process that combines multiple sources of existing data").
69. The federal regulations on medical information privacy that resulted from the Health Insurance Portability and Accountability Act (HIPAA) were inspired by the federal government's desire to have all medical providers keep electronic medical records that could be easily transmitted wherever they were needed and comparable across different institutions for purposes of federal benefit payment programs. See 45 C.F.R. pts. 160, 164 (2006). Recognizing that such ease of access to personal medical information might raise concern among the public, Congress required that either legislation or regulations be produced to protect the privacy of personal medical information. When Congress failed to act, the Department of Health and Human Services adopted regulations (the HIPAA Privacy Rule). Attempts to create a nationwide system of electronic medical records have stalled in Congress.
70. Ricardo Alonso-Zaldivar, Bill Seeks National Medical Records System, L.A. TIMES, Aug. 13, 2006, at A22. Supporters believe that having records electronically accessible anywhere in the country would improve quality and prevent medical errors, but critics argue that current attempts to establish such a system contain too few privacy safeguards. See id.
71. Thacker, supra note 18, at 6.
72. See John A. Jemigan et al, Bioterrorism-Related Inhalational Anthrax: The First 10 Cases Reported in the United States, 7 EMERGING INFECTIOUS DISEASES 933, 934 (2001) (describing the first ten reported cases, both fatal and non-fatal, in the anthrax outbreak).
73. See generally LEARNING FROM SARS: PREPARING FOR THE NEXT DISEASE OUTBREAK (Stacey Knobler et al. eds, 2004) [hereinafter LEARNING FROM SARS], available at http:/books.nap.edu/html/SARS/0309091543.pdf;
74. WORLD HEALTH ORG., SEVERE ACUTE RESPIRATORY SYNDROME (SARS) (2003), available at http://www.who.int/csr/media/sars_wha.pdf; World Health Org., Summary of Probable SARS Cases with Onset of Illness from 1 November 2002 to 31 July 2003, http://www.who.int/csr/sars/country/table2004_04_21/en/index. hrml (last visited Apr. 1, 2007)
75. See generally Arnold S. Monto, The Threat of Avian Influenza Pandemic, 352 NEW ENG. J. MED. 323 (2005);
76. Klaus Stöhr, Avian Influenza and Pandemics - Research Needs and Opportunities, 352 NEW ENG. J. MED. 405 (2005);
77. Kumnuan Ungchusak et al. Probable Person-to-Person Transmission of Avian Influenza A (H5N1), 352 NEW ENG. J. MED. 333 (2005).
78. On October 23, 2001, the CDC released a "model state law" on emergency powers that, among other things, would require physicians and hospitals to report patients with any infectious disease to the state health department and require drug stores to report sales of prescription and over-the-counter medications for respiratory illnesses. See MODEL STATE EMERGENCY HEALTH POWERS ACT § 301 (Ctr. for Law & the Public's Health 2001), revised version available at http://www.publichealthlaw.net/MSEHPA/ MSEHPA2.pdf;
79. see also George J. Annas, Bioterrorism, Public Health, and Civil Liberties, 346 NEW ENG. J. MED. 1337, 1338-39 (2002) ("[T]he authority to respond to a bioterrorist attack or a new epidemic that the model act provides is much too broad, since it applies not just to real emergencies such as a smallpox attack but also to nonemergency conditions as diverse as annual influenza epidemics and the AIDS epidemic").
80. The Public Health Security and Bioterrorism Preparedness and Response Act of 2002, Pub. L. No. 107-188, 116 Stat. 594, authorized funding to improve public health surveillance and reporting at the state and local level, and to integrate federal, state, and local systems. See 42 U.S.C §§ 247d-4(b), 300hh(b)(2) (Supp. IV 2004). Proponents argued that bioterrorism surveillance would have dual uses - detecting both terrorist attacks and disease outbreaks caused by nature or accident. Critics argued that such measures would be counterproductive and that the public would be better served by providing public health services.
81. See generally Hillel W. Cohen et al. The Pitfalls of Bioterrorism Preparedness: The Anthrax and Smallpox Experiences, 94 AM. J. PUB. HEALTH 1667 (2004).
82. Public concern was sparked by the Total Information Awareness (later called Terrorism Information Awareness) program headed by John Poindexter, who was forced to resign as a result of the controversy. See O'HARROW, supra note 6, at 191-98, 203-13.
83. See Jonathan Krim, Customer Data Lost, Citigroup Unit Says, WASH. POST, June 7, 2005, at A1;
84. Robert O'Harrow Jr, Agencies Not Protecting Privacy Rights, GAO Says, WASH. POST, Apr. 5, 2006, at A9;
85. David Stout & Tom Zeller Jr., Vast Data Cache About Veterans Is Stolen, N.Y. TIMES, May 23, 2006, at A1;
86. see also sources cited supra note 10.
87. See News Release, Harris Interactive, The Benefits of Electronic Medical Records Sound Good, but Privacy Could Become a Difficult Issue (Feb. 8, 2007), available at http://www.harrisinteractive.com/news/allnewsbydate. asp?NewsID=1174;
88. Alan F. Westin, Professor Emeritus, Columbia Univ., Presentation at the Hearing on Privacy and Health Information Technology of the Dep't of Health & Human Servs, Nat'l Comm. on Vital & Health Statistics, Subcomm. on Privacy & Confidentiality (Feb. 23, 2005), available at http://ncvhs.hhs.gov/050223tr.htm.
89. See, e.g., CDC, BioSense, http://www.cdc.gov/biosense (last visited Apr. 1, 2007);
90. CDC, Public Health Information Network (PHIN), http://www.cdc.gov/PHIN (last visited Apr. 1, 2007).
91. The CDC has general authority to "conduct in the [Public Health] Service, and encourage, cooperate with, and render assistance to other appropriate public authorities, scientific institutions, and scientists in the conduct of, and promote the coordination of, research, investigations, experiments, demonstrations, and studies related to the causes, diagnosis, treatment, control, and prevention of physical and mental diseases and impairments of man." Public Health Service Act § 301(a), 42 U.S.C § 241(a) (2000). The CDC is also authorized to "collect and make available through publications and other appropriate means, information as to, and the practical application of, such research and other activities," see 42 U.S.C. § 241(a)(1), and to cooperate with and advise the states on matters relating to the public health, see 42 U.S.C. § 243.
92. See CDC, UPDATED GUIDELINES, supra note 22, at 1.
93. For example, in 1995 and 1996, the CSTE and CDC recommended adding elevated blood lead levels, silicosis, acute pesticide poisoning, and tobacco use. Roush et al., supra note 28, at 165.
94. See supra note 15.
95. Outbreaks are often reported to the local health department, which then reports to the state health department. See, e.g., WIS. STAT. ANN. § 252.05 (West 2007);
96. 105 MASS. CODE REGS. §§ 300.100, 300.110 (2007).
97. State law usually authorizes the health department to submit reports to the CDC It may also authorize the state to allow a different branch of the health department or external researchers to use the data. The release of identifiable data for such secondary research usually requires prior approval by a state agency (and a university's institutional review board) charged with protecting the welfare of human subjects of research.
98. See generally U.S. GEN. ACCOUNTING OFFICE, supra note 40;
99. WORLD HEALTH ORG., ENGAGING FOR HEALTH (2006), available at http://whqlibdoc.who.int/ publications/2006/GPW_eng.pdf.
100. See, e.g., Abdelmonem A. Afifi & Lester Breslow, The Maturing Paradigm of Public Health, 15 ANN. REV. PUB. HEALTH 223, 232 (1994) ("Public health practice embraces all those actions that are directed to the assessment of health and disease problems in the population; the formulation of policies for dealing with such problems; and the assurance of environmental, behavioral, and medical services designed to accelerate favorable health trends and reduce the unfavorable.").
101. See generally COMM. ON ASSURING THE HEALTH OF THE PUB. IN THE 21ST CENTURY, INST. OF MED., THE FUTURE OF THE PUBLIC'S HEALTH IN THE 21ST CENTURY (2003).
102. COMM. FOR THE STUDY OF THE FUTURE OF PUB. HEALTH, INST. OF MED., THE FUTURE OF PUBLIC HEALTH 19 (1988). Nearly a century ago, one scholar proposed a more detailed definition that many would still find accurate today: Public health is the science and the art of preventing disease, prolonging life, and promoting physical health and efficiency through organized community efforts for the sanitation of the environment, the control of community infections, the education of the individual in principles of personal hygiene, the organization of medical and nursing service for the early diagnosis and preventive treatment of disease, and the development of the social machinery which will ensure to every individual in the community a standard of living adequate for the maintenance of health.
103. C.-E.A. Winslow, The Unfilled Fields of Public Health, 51 SCIENCE 23, 30 (1920). For yet another recent definition,
104. see BERNARD J. TURNOCK, PUBLIC HEALTH: WHAT IT IS AND HOW IT WORKS 11 (3d ed. 2004) ("[P]ublic health... is a broad social enterprise, more akin to a movement, that seeks to extend the benefits of current knowledge in ways that will have the maximum impact on the health status of a population.").
105. See Wendy E. Parmet, From Slaughter-House to Lochner: The Rise and Fall of the Constitutionalization of Public Health, 40 AM. J. LEGAL HIST. 476, 477 (1996).
106. See Alexander D. Langmuir, The Surveillance of Communicable Diseases of National Importance, 268 NEW ENG. J. MED. 182, 182-83 (1963) (defining surveillance as "the continued watchfulness over the distribution and trends of incidence through the systematic collection, consolidation, and evaluation of morbidity and mortality reports and other relevant data" together with timely and regular dissemination to those who "need to know");
107. see also Berkelman et al., supra note 37, at 759;
108. James W. Buehler, Surveillance, in MODERN EPIDEMIOLOGY 435, 435 (Kenneth J. Rothman & Sander Greenland eds., 2d ed. 1998);
109. Stephen B. Thacker & Ruth L. Berkelman, Public Health Surveillance in the United States, 10 EPIDEMIOLOGY REV. 164, 164 (1988).
110. Outbreak investigations are not limited to contagious diseases. They also include investigations into sources of poisoning, such as pesticides used in the environment, at least where there is no obvious cause.
111. Of course, cases that are not seen by a physician or, if seen, are incorrectly diagnosed, will still be missed. This was the case in the SARS epidemic. The first North American case of SARS was not recognized because the victim, a woman who had returned to Toronto after visiting Hong Kong, died at home without seeking medical care on March 5, 2003. Her son was hospitalized two days later and died on March 13, 2003. Four other family members fell ill and were treated in isolation in four other hospitals, where SARS spread to hospital staff and household contacts. See Monali Varia et al. Investigation of a Nosocomial Outbreak of Severe Acute Respiratory Syndrome (SARS) in Toronto, Canada, 169 CAN. MED. ASS'N J. 285, 288 (2003).
112. See generally Tomislav Svoboda et al. Public Health Measures To Control the Spread of the Severe Acute Respiratory Syndrome During the Outbreak in Toronto, 350 NEW ENG. J. MED. 2352 (2004).
113. Many programs have small numbers of employees, with some working only part-time on surveillance activities. See OFFICE OF INSPECTOR GEN., DEP'T OF HEALTH & HUMAN SERVS, STATE AND LOCAL BIOTERRORISM PREPAREDNESS, at i-ii (2002), available at http://oig.hhs.gov/oei/reports/oei-02-01-00550.pdf;
114. U.S. GEN. ACCOUNTING OFFICE, NO. GAO-03-373, BIOTERRORISM: PREPAREDNESS VARIED ACROSS STATE AND LOCAL JURISDICTIONS 17-22 (2003), available at http://www.gao.gov/new.items/d03373.pdf.
115. Many health departments require physicians to telephone reports of cases that need immediate investigation, because ordinary weekly or monthly reports would come too late. See J. Lyle Conrad & James L. Pearson, Improving Epidemiology, Surveillance, and Laboratory Capabilities, in TERRORISM AND PUBLIC HEALTH 270, 271 (Barry S. Levy & Victor W. Sidel eds., 2003).
116. See DENA M. BRAVATA ET AL., B IOTERRORISM PREPAREDNESS AND RESPONSE: USE OF INFORMATION TECHNOLOGIES AND DECISION SUPPORT SYSTEMS 4 (2002), available at http://www.ahrq.gov/downloads/pub/evidence/pdf/bioit/bioit.pdf;
117. Syndromic Surveillance for Bioterrorism Following the Attacks on the World Trade Center - New York City, 2001, 51 MORBIDITY & MORTALITY WKLY. REP. (SPECIAL ISSUE) 13, 13 (2002), available at http://www.cdc.gov/mmwr/PDF/ wk/mm51sp.pdf.
118. After September 11 and in preparation for the war in Iraq, the Bush administration encouraged the Department of Defense Advanced Research Projects Agency (DARPA), headed by Vice Admiral John M. Poindexter, to create a computerized network of data that could quickly detect a chemical or biological attack against the United States. Responsibility for a new national bioterrorism warning program was later transferred to civilian control in the CDC. William J. Broad & Judith Miller, Health Data Monitored for Bioterror Warning, N.Y. TIMES, Jan. 27, 2003, at Al.
119. See Robert A. Weinstein, Planning for Epidemics - The Lessons of SARS, 350 NEW ENG. J. MED. 2332, 2334 (2004). In China, physicians reported an outbreak of atypical pneumonia to provincial hospitals in late January 2003, during the Chinese New Year holiday. This was an unhappy coincidence, because many officials were on vacation and could not attend to the report, while holiday travel probably exacerbated the spread of disease. Dr. Carlos Urbani, a WHO official, feared that a patient he was treating in Hanoi had avian influenza and contacted the WHO Pacific Regional Office. News of the outbreak was sent through e-mail, internet chat rooms, and local media, rather than the official reporting program. The WHO asked China for information and was told on February 14 that an outbreak consistent with atypical pneumonia was coming under control. LEARNING FROM SARS, supra note 44, at 4-6.
120. See generally U.S. GEN. ACCOUNTING OFFICE, NO. GAO-04-564, EMERGING INFECTIOUS DISEASES: ASIAN SARS OUTBREAK CHALLENGED INTERNATIONAL AND NATIONAL RESPONSES (2004).
121. A CDC official was reported in January 2003 as saying, "Whether this is going to detect terrorism is unclear. But as a safety net and for tracking an event once it's going on, it's very promising." Broad & Miller, supra note 67;
122. see also James W. Buehler et al. Syndromic Surveillance and Bioterrorism-Related Epidemics, 9 EMERGING INFECTIOUS DISEASES 1197, 1197 (2003);
123. Charlene Babcock Irvin et al. Syndromic Analysis of Computerized Emergency Department Patients ' Chief Complaints: An Opportunity for Bioterrorism and Influenza Surveillance, 41 ANNALS EMERGENCY MED. 447, 447 (2003);
124. Farzad Mostashari et al., Use of Ambulance Dispatch Data as an Early Warning System for Communitywide Influenzalike Illness, New York City, 80 (Supp. 1) J. URB. HEALTH i43, i48 (2003);
125. Julie A. Pavlin et al. Innovative Surveillance Methods for Rapid Detection of Disease Outbreaks and Bioterrorism: Results of an Interagency Workshop on Health Indicator Surveillance, 93 AM. J. PUB. HEALTH 1230, 1230 (2003).
126. See Kenneth D. Mandl et al. Implementing Syndromic Surveillance: A Practical Guide Informed by the Early Experience, 11 J. AM. MED. INFORMATICS ASS'N 141, 141 (2004) ("The term syndromic surveillance refers to methods relying on detection of clinical case features that are discernable before confirmed diagnoses are made."). For example, the computer tabulates the number of cases of respiratory distress, fever, headache, and nausea seen, regardless of whether a diagnosis has been made.
127. Arthur Reingold, If Syndromic Surveillance Is the Answer, What Is the Question?, 1 BIOSECURITY & BIOTERRORISM: BIODEFENSE STRATEGY, PRAC. & Sci. 77, 77 (2004);
128. see also CDC, 53 MORBIDITY & MORTALITY WKLY. REP., NO. RR-5, FRAMEWORK FOR EVALUATING PUBLIC HEALTH SURVEILLANCE SYSTEMS FOR EARLY DETECTION OF OUTBREAKS: RECOMMENDATIONS FROM THE CDC WORKING GROUP 2 (2004), available at http://www.cdc.gov/mmwr/PDF/rr/rr5305.pdf. The CDC BioSense Initiative is a syndromic surveillance system, intended to provide an early warning of diseases that could produce an epidemic. CDC,
129. BioSense, supra note 51. CDC funds selected hospitals to participate in the program, including Department of Defense and Veterans Affairs hospitals. Id. The National Strategy for Pandemic Influenza calls for the BioSense Initiative to be established in forty-two cities within twelve months - more than CDC had planned - although that goal may be unrealistic.
130. See Bob Brewin, Critics Question Biosurveillance System Plan, GOVERNMENT HEALTH IT, May 8, 2006, available at http://www.govhealthit.com/article94303-05-08-06 ("[H]ealth officials ... said the timelines for deploying and enhancing [disease surveillance] systems are overly optimistic. The same officials criticized the Bush administration for failing to provide necessary funds to help them meet the challenges of combating a pandemic").
131. For example, if the program shows an abnormally large number of cases of upper respiratory problems, hospital staff might explain that a busload of students with the common cold arrived at the hospital after a motor vehicle accident on a nearby highway. In contrast, if there is no explanation, the health department might send an investigator to interview patients still at the hospital to discover where they may have caught the illness. At that point, the hospital could identify the patients to the health department so that the department employees could interview the patients. Since many biological agents cause upper respiratory problems, it would be important to distinguish between a deliberate terrorist source and a natural source. A collection of definitions of the syndromes that are defined by symptoms is available from the CDC See SYNDROME DEFINITIONS FOR DISEASES ASSOCIATED WITH CRITICAL BIOTERRORISM-ASSOCIATED AGENTS 4-6 (2003), available at http://www.bt.cdc.gov/surveillance/syndromedef/pdf/syndromedefinitions.pdf.
132. However, systems could be changed to incorporate patient names. William B. Lober et al. Syndromic Surveillance Using Automated Collection of Computerized Discharge Diagnoses, 80 (Supp. 1) J. URB. HEALTH i97, i103 (2003).
133. Reingold, supra note 70, at 78-81.
134. Brewin, supra note 70 ("Some senior health officials questioned the value of disease surveillance systems described in the Bush administration's plan.... Dr. Rex Archer, health director of Kansas City, Mo., and president of the National Association of County and City Health Officials, said NBIS would need a level of funding and national commitment comparable to the 1960s' space race to deliver what the plan calls for within a year.").
135. David L. Buckeridge et al. Evaluating Detection of an Inhalational Anthrax Outbreak, 12 EMERGING INFECTIOUS DISEASES 1942, 1946 (2006);
136. Reingold, supra note 70, at 79.
137. See Richard Pérez-Peña, System in New York for Early Warning of Disease Patterns, N.Y. TIMES, Apr. 4, 2003, at Al (citing the views of Dr. Farzad Mostashari, then assistant commissioner for epidemiology services for the New York City Health Department).
138. But see Lawrence O. Gostin, When Terrorism Threatens Health: How Far Are Limitations on Personal and Economic Liberties Justified?, 55 FLA. L. REV. 1105, 1129 (2003) (citing a CDC report that advocated for health department surveillance in order to contain bioterrorist attacks).
139. See CDC, National Notifiable Disease Surveillance System, 1989, http://wonder.cdc.gov/wonder/sci_data/misc/type_txt/nndss89.asp (last visited Apr. 1, 2007).
140. Instructions on how to construct a Soundex code for names are available from the National Archives and Records Administration, an independent federal agency. See Nat'l Archives & Records Admin, Soundex Indexing, http://www.archives.gov/publications/general-info-leaflets/55.html (last visited Apr. 1, 2007). The code uses the first letter of a person's surname followed by three numbers assigned to the consonants next appearing in the name: 1 = B, F, P, V; 2 = C, G, J, K, Q, S, X, Z; 3 = D, T; 4 = L; 5 = M, N; 6 = R; 0 = no additional letters in name. It offers examples: the name Washington is coded W252, and Gutierrez is coded G362. Id. The result gives a phonetic result without the vowels or H, W, and Y. Some websites automatically convert a surname to a Soundex code. See, e.g., ProGenealogists, Soundex Code Generator, http://www.progenealogists.com/soundex.htm (last visited Apr. 1, 2007).
141. Individuals might be identified by comparing the phonetic name with other identifying information on the reporting form, such as date of birth, sex, race, and address. Like many organizations concerned with statistical accuracy, the CDC strongly encourages providers to complete all the information requested on reporting forms and evaluates the surveillance programs it funds on the basis of, among other things, the completeness of reports. See CDC, UPDATED GUIDELINES, supra note 22, at 16.
142. PKU results from a defective enzyme for metabolizing phenylalanine, a common amino acid in protein-rich food, and causes severe neurological damage. A diet low in phenylalanine can prevent or reduce the damage, if begun during infancy. See OFFICE OF TECH. ASSESSMENT, U.S. CONG, HEALTHY CHILDREN: INVESTING IN THE FUTURE 107 (1988) (estimating that the United States saved $3.2 million dollars for every 100,000 newborns screened for PKU and hypothyroidism, or $93,000 per diagnosed case, in 1986).
143. Nat'l Human Genome Research Inst, The History of Newborn Phenylketonuria Screening in the U.S., http://biotech.law.lsu.edu/research/fed/tfgt/appendix5. htm (last visited Apr. 1, 2007).
144. See, e.g., Ruth R. Faden et al. Parental Rights, Child Welfare, and Public Health: The Case of PKU Screening, 72 AM. J. PUB. HEALTH 1396, 1397 (1982).
145. But see Ellen Wright Clayton, Screening and Treatment of Newborns, 29 HOUS. L. REV. 85, 87-88 (1992) (arguing for genetic screening of newborns "only when children can derive substantial benefit from early detection" and when "parents can participate in the screening process"). Parents have a common law, and in some states statutory, duty to provide medically necessary care for their children.
146. See Prince v. Massachusetts, 321 U.S. 158, 167 (1944) ("[T]he state has a wide range of power for limiting parental freedom and authority in things affecting the child's welfare; and . . . this includes, to some extent, matters of conscience and religious conviction.");
147. Saratoga County Dep't of Soc. Servs. v. Hofbauer (In re Hofbauer), 393 N.E.2d 1009, 1013 (N.Y. 1979) ("[T]he Legislature has imposed upon the parents of a child the non-delegable affirmative duty to provide their child with adequate medical care."). But see In re Green, 292 A.2d 387, 392 (Pa. 1972) ("We are of the opinion that as between a parent and the state, the state does not have an interest of sufficient magnitude outweighing a parent's religious beliefs when the child's life is not immediately imperiled by his physical condition.").
148. See generally Walter Wadlington, Medical Decision Making for and by Children: Tensions Between Parent, State, and Child, 1994 U. ILL. L. REV. 311 (discussing the development of case law imposing medical treatment for children despite a lack of parental consent).
149. See Kenneth D. Mandl et al. Newborn Screening Program Practices in the United States: Notification, Research, and Consent, 109 PEDIATRICS 269, 270 (2002) (finding that only twenty-two states conducted follow-up to confirm that treatment had begun). Screening programs do not typically provide treatment, which often consists of special diets that can be expensive and are not generally covered by health insurance.
150. See ASSESSING GENETIC RISKS: IMPLICATIONS FOR HEALTH AND SOCIAL POLICY 261-63 (Lori B. Andrews et al. eds, 1994) [hereinafter ASSESSING GENETIC RISKS].
151. U.S. GEN. ACCOUNTING OFFICE, NO. GAO-03-449, NEWBORN SCREENING: CHARACTERISTICS OF STATE PROGRAMS 1 (2003), available at http://www.gao.gov/new.items/d03449.pdf. For current comparative data on state laws requiring screening for specific conditions,
152. see Nat'l Newborn Screening & Genetics Res. Ctr., National Newborn Screening Status Report, http://genes-r-us.uthscsa.edu (last visited Apr. 1, 2007).
153. See, e.g., Clayton, supra note 82, at 87-88;
154. Jean-Louis Dhondt & Jean-Pierre Farriaux, Impact of French Legislation on Neonatal Screening, in HUMAN DNA: LAW AND POLICY 285, 286 tbl.I (Bartha Maria Knoppers ed., 1997).
155. These conditions include PKU, congenital hypothyroidism, classical galactosemia, hemoglobinopathies (such as sickle cell disease), congenital adrenal hyperplasia, biotinidase deficiency, maple syrup urine disease, and homocystinuria. The last two, however, do not have genuinely effective treatments. ASSESSING GENETIC RISKS, supra note 84, at 100 (recommending against screening for conditions for which there is no beneficial treatment).
156. See, e.g., George J. Annas, Mandatory PKU Screening: The Other Side of the Looking Glass, 72 AM. J. PUB. HEALTH 1401, 1402 (1982) (discussing the potential stigma and fear caused by false positive results during newborn genetic testing);
157. Sheila Wildeman & Jocelyn Downie, Genetic and Metabolic Screening of Newborns: Must Health Care Providers Seek Explicit Parental Consent?, 9 HEALTH L.J. 1, 2-3 (2001) (discussing the potential stigma attached to a child who tests positive for a genetic condition that has no treatment).
158. See American Academy of Pediatrics Taskforce, Newborn Screening: A Blueprint for the Future, 106 PEDIATRICS 389, 389 (2000) [hereinafter Newborn Screening];
159. see also Neo Gen Screening, Inc. v. New Eng. Newborn Screening Program, 187 F.3d 24, 26 (1st Cir. 1999) (describing Neo Gen's claim that it had developed a more comprehensive, cheaper testing procedure than that in use by Massachusetts at the time). For recent screening cost estimates when employing tandem mass spectronomy,
160. see PRICEWATERHOUSECOOPERS, NEWBORN SCREENING PROGRAMS: AN OVERVIEW OF COSTS AND FINANCING 14-16 (2001), available at http://www.marchofdimes. com/files/Final_PWC_NBS_Report2.pdf.
161. Request for Public Comment on a HRSA Commissioned Report, Newborn Screening: Toward a Uniform Screening Panel and System, 70 Fed. Reg. 11,247 (Mar. 8, 2005).
162. See, e.g., Jeffrey R. Botkin et al. Newborn Screening Technology: Proceed with Caution, 117 PEDIATRICS 1793, 1794 (2006). In addition, if new tests are added before they are validated, they can produce false positives that result in damaging a child who receives treatment inappropriately.
163. See Norman Fost, Genetic Diagnosis and Treatment: Ethical Considerations, 147 AM. J. DISEASES CHILD. 1190, 1191 (1993) (arguing that, in the early years of its use, the special diet designed for infants with PKU caused neurological damage in children erroneously diagnosed with the disease).
164. See Newborn Screening, supra note 89, at 389.
165. See Richard S. Olney et al. Storage and Use of Residual Dried Blood Spots from State Newborn Screening Programs, 148 J. PEDIATRICS 618, 618 (2006).
166. For discussion of whether the consent of blood and tissue donors should be required for future research uses of their samples, see LORI ANDREWS & DOROTHY NELKIN, BODY BAZAAR: THE MARKET FOR HUMAN TISSUE IN THE BIOTECHNOLOGY AGE 21-23 (2001);
167. NAT'L BIOETHICS ADVISORY COMM'N, 1 RESEARCH INVOLVING HUMAN BIOLOGICAL MATERIALS: ETHICAL ISSUES AND POLICY GUIDANCE 62-71 (1999);
168. Ellen Wright Clayton, Informed Consent and Biobanks, 33 J.L. MED. & ETHICS 15, 18-20 (2005);
169. Mark A. Rothstein, Expanding the Ethical Analysis of Biobanks, 33 J.L. MED. & ETHICS 89, 92-93 (2005).
170. See discussion supra notes 16-17 and accompanying text.
171. Conn. State Med. Soc'y, History & Milestones, http://www.csms.org/ index.php?option=com_content&task=view&id=35&Itemid=43 (last visited Apr. 1, 2007).
172. Id.
173. CDC, NPCR Cancer Surveillance System Rationale and Approach, http://www.cdc.gov/cancer/npcr/training/css.htm (last visited Apr. 1, 2007) [hereinafter NPCR-CSS] ("Cancer surveillance is the ongoing, timely, and systematic collection and analysis of information on cancer risk factors (such as lifestyle factors, behavioral influences, genetic predispositions, or environmental exposures), screening and early detection, new cancer cases, cancer deaths, extent of disease at diagnosis, treatment, clinical management, and survival").
174. Private, professional organizations, including the National Cancer Registrars Association and the North American Association of Central Cancer Registries (NAACCR), set voluntary standards for collecting data, such as definitions and data formats, and criteria for completeness, timeliness, and quality of the data. See generally N. AM. ASS'N OF CENT. CANCER REGISTRIES, 2 STANDARDS FOR CANCER REGISTRIES: DATA STANDARDS AND DATA DICTIONARY (Lori A. Havener & Dianne Hultstrom eds, 11th ed. 2006), available at http://www.naaccr.org/filesystem/pdf/ Volume%20II%20Version%2011.1 .pdf. The standards may vary with the specific goals of particular registries.
175. See generally Judith Swan et al. Cancer Surveillance in the U.S., 83 CANCER 1282 (1998).
176. See Nat'l Cancer Inst., Overview of the SEER Program, http://seer.cancer.gov/about (last visited Apr. 1, 2007).
177. Id. (listing the states, cities, and rural areas from which data is collected).
178. See Nat'l Cancer Inst., SEER - Frequently Asked Questions, http://www.seer.cancer.gov/faq (last visited Apr. 1, 2007).
179. See Cancer Registries Amendment Act, Pub. L. No. 102-515, 106 Stat. 3372 (1992) (codified at 42 U.S.C. § 280e (2000)). The Cancer Registries Amendment Act authorized the CDC to "make grants to States" and to "make grants or enter into contracts with academic or nonprofit organizations designated by the State to operate the State's cancer registry." Id. § 3, 106 Stat, at 3372 (codified at 42 U.S.C. § 280e(a)). The Act further provided that the data to be collected in the CDC-funded registries would include: (1) demographic information about each case of cancer; (2) information on the industrial or occupational history of the individuals with the cancers, to the extent such information is available from the same record; (3) administrative information, including date of diagnosis and source of information; (4) pathological data characterizing the cancer, including the cancer site, stage of disease (pursuant to Staging Guide), incidence, and type of treatment; and (5) other elements determined appropriate by the Secretary. Id., 106 Stat, at 3373 (codified at 42 U.S.C. § 280e(a)). CDC grant application requirements specified that "demographic information" should include the patient's name, address, census tract, race, sex, birth date, and social security number. National Program of Cancer Registries, 59 Fed. Reg. 26,800, 26,801 (May 24, 1994).
180. See 42 U.S.C. § 280e(c)(2)(D)(vi)-(vii); see also State Cancer Registries: Status of Authorizing Legislation and Enabling Regulations - United States, October 1993, 43 MORBIDITY & MORTALITY WKLY. REP. 71, 74 (1994) ("[T]he federal statute requires authorization of cancer registries under state-specific laws and promulgation of regulations that ensure case reporting and use of data for research .... Registries provide a means for collecting such information and may assist in conducting population-based epidemiologic and biologic research, allocating of health resources, and evaluating cancer-control and cancer-prevention programs.").
181. See, e.g., Kathleen McDavid et al. Prostate Cancer Incidence and Mortality Rates and Trends in the United States and Canada, 119 PUB. HEALTH REP. 174, 175 (2004).
182. See, e.g., CAL. HEALTH & SAFETY CODE §§ 103875-103885 (West 2007) (creating a cancer registry and exempting healthcare workers from liability for reporting case information); MASS. GEN. LAWS ch. 111, § 111B (2004) (requiring submission of information on certain brain tumors to state registries);
183. R.I. GEN. LAWS § 5-37.3-4(b)(18) (2007) (allowing disclosure of case information to cancer registries without first obtaining patient consent).
184. See, e.g., Doug Abrahms, CDC Tries To Create State-by-State Cancer Database, GANNETT NEWS SERVICE, Dec. 29, 2002.
185. while some states had cancer registries for many years, few had enough staff or resources to conduct the research that made their data useful. When NCI funded its SEER sites, a more sophisticated cancer tracking and research program developed in its locations. Elsewhere, data collection depended on the creativity of registry personnel and cooperation from hospitals. Hospitals reportedly pay their cancer registrars more than state cancer registries do. Jeff Parrott, Indiana Not Part of National Cancer Report, J. & COURIER (Lafayette, Ind.), Nov. 29, 2002, at 1A.
186. See Printz v. United States, 521 U.S. 898, 912 (1997).
187. 42 U.S.C. § 280e(c)(2)(D)(iii) (2000).
188. Dispensing with the consent requirement appears vulnerable to challenge as a warrantless search in violation of the Fourth Amendment's prohibition against unreasonable searches and seizures. See Tucson Woman's Clinic v. Eden, 371 F.3d 1173, 1179 (9th Cir. 2004) (finding a Fourth Amendment violation where Arizona regulations required abortion providers to submit to "warrantless, unbounded inspections of their offices and provide DHS inspectors access to unredacted medical records").
189. The first principle of the Nuremberg Code is that "the voluntary consent of the human subjects is absolutely essential." See 1 NAT'L BIOETHICS ADVISORY COMM'N, ETHICAL AND POLICY ISSUES IN RESEARCH INVOLVING HUMAN PARTICIPANTS app. C, at 151 (2001), available at http://www.georgetown.edu/research/nrcbl/nbac/human/ overvol1.pdf. For an analysis of the Code's legal status in the United States,
190. see generally George J. Annas, The Nuremberg Code in U.S. Courts: Ethics Versus Expediency, in THE NAZI DOCTORS AND THE NUREMBERG CODE 201 (George J. Annas & Michael A. Grodin eds, 1992).
191. See, e.g., Universal Declaration of Human Rights, G.A. Res. 217(III)A art. 1, U.N. GAOR, 3d Sess., 1st plen. mtg., U.N. Doc A/810 (Dec. 10, 1948).
192. See IMMANUEL KANT, GROUNDWORK FOR THE METAPHYSICS OF MORALS 45 (Allen W. Wood ed. & trans., Yale Univ. Press 2002) (1785) ("[T]he human being, and in general every rational being, exists as end in itself, not merely as means to the discretionary use of this or that will, but in all its actions, those directed toward itself as well as those directed toward other rational beings, it must always at the same time be considered as an end").
193. See, e.g., Abdullahi v. Pfizer, Inc., No. 01 Civ. 8118, 2002 WL 31082956, at *1, 3-4 (S.D.N.Y. Sept. 17, 2002) (denying defendant's motion to dismiss because the plaintiffs' complaint, which alleged that the defendant had administered experimental antibiotics to plaintiffs without their informed consent, adequately stated a claim under the Alien Tort Claims Act), vacated in part, 11 F. APP'X 48 (2d Cir. 2003);
194. Diaz v. Hillsborough County Hosp. Auth., No. 8:90-CV-120-T-25B, 2000 U.S. Dist. LEXIS 14061, at *21 (M.D. Fla. Aug. 7, 2000) (approving a settlement in which the defendant compensated a class of pregnant women for conducting research studies on them without their consent);
195. In re Cincinnati Radiation Litig, 874 F. Supp. 796, 821 (S.D. Ohio 1995) ("The Nuremberg Code is part of the law of humanity. It may be applied in both civil and criminal cases by the federal courts in the United States.");
196. Grimes v. Kennedy Krieger Inst., Inc., 782 A.2d 807, 844 (Md. 2001) (stating that "[a] human subject is entitled to all material information," and rejecting the defendant's claim that it obtained consent because "full material information was not furnished to the subjects");
197. T.D. v. N.Y. State Office of Mental Health, 650 N.Y.S.2d 173, 176 (N.Y. 1996) (striking down regulations which allowed research on mental health patients who were incapable of giving informed consent, because the regulations "violate the State and Federal constitutional rights to due process, as well as the common law right to personal autonomy, of the patients"). But cf. Robertson v. McGee, No. 01-CV-60-C, 2002 U.S. Dist. LEXIS 4072, at *6-8 (N.D. Okla. Jan. 28, 2002) (dismissing a claim brought by cancer research subjects because the "right to be treated with dignity" established in the Nuremberg Code does not give rise to a private cause of action); White v. Paulsen, 997 F. Supp. 1380, 1383 (E.D. Wash. 1998) (finding that "non-consensual medical experimentation violates the laws of nations," but declining to imply the existence of a private right of action for violation of such international law).
198. See generally Wendy K. Mariner, Human Subjects Research, Law, Common Law of Human Experimentation, in 2 ENCYCLOPEDIA OF ETHICAL, LEGAL, AND POLICY ISSUES IN BIOTECHNOLOGY 654 (Thomas H. Murray & Maxwell J. Mehlman eds, 2000) (summarizing common law causes of action in the context of human subjects research).
199. See Federal Policy for the Protection of Human Subjects, 56 Fed. Reg. 28,002 (June 18, 1991). The Common Rule harmonized regulations of more than twenty federal departments and governs human subject research funded by, or submitted to, those departments. See 21 C.F.R. pts. 50, 56 (2006) for the FDA version of the Common Rule, and 45 C.F.R. pt. 46 (2006) for the Department of Health and Human Services version. Most universities, medical centers, and research institutions have executed general assurance agreements with federal agencies, agreeing to apply the Common Rule to all research conducted at the institution, regardless of the source of funding.
200. See United States v. Stanley, 483 U.S. 669, 687 (1987) (Brennan, J., concurring in part and dissenting in part) (suggesting that the Constitution protects a right to human dignity, like that described in the Nuremberg Code, which would prohibit research on humans without the subject's knowledge and consent);
201. id. at 710 (O'Connor, J., concurring in part and dissenting in part) (same). Both courts and claimants have begun to cite the Nuremberg Code as support for the conclusion that research without subject consent is unlawful.
202. See cases cited supra note 115.
203. See, e.g., 45 C.F.R. § 46.102(f) (2006) (defining a human subject to include "a living individual about whom an investigator ... conducting research obtains ... [identifiable private information").
204. See JAMES G. HODGE, JR. & LAWRENCE O. GOSTIN, COUNCIL OF STATE & TERRITORIAL EPIDEMIOLOGISTS, PUBLIC HEALTH PRACTICE VS. RESEARCH 16 (2004), available at http://www.cste.org/pdffiles/newpdffiles/CSTEPHResRptHodgeFinal.5.24.04.pdf; Amy L. Fairchild, Dealing with Humpty Dumpty: Research, Practice, and the Ethics of Public Health Surveillance, 31 J.L. MED. & ETHICS 615, 617 (2003). Local public health officials are likely to characterize surveillance as practice rather than research because they are the first to receive case reports and conduct outbreak investigations, in contrast to the CDC, which receives reports from state health departments and conducts more long-range analysis that would normally be seen as research.
205. See Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, Report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 44 Fed. Reg. 23, 192, 23, 193 (Apr. 18, 1979) [hereinafter Belmont Report] ("For the most part, the term 'practice' refers to interventions that are designed solely to enhance the well-being of an individual patient or client and that have a reasonable expectation of success. The purpose of medical or behavioral practice is to provide diagnosis, preventive treatment or therapy to particular individuals. By contrast, the term 'research' designates an activity designed to test an hypothesis, permit conclusions to be drawn, and thereby to develop or contribute to generalizable knowledge (expressed, for example, in theories, principles, and statements of relationships)." (emphasis added) (footnote omitted)).
206. Some categories of research might justifiably be conducted without consent, such as research using anonymous data and the collection and analysis of vital statistics from birth, marriage, and death certificates. These categories are also not considered to be surveillance, strictly defined. Berkelman et al, supra note 37, at 759.
207. See HODGE & GOSTIN, supra note 119, at 22 (arguing that the states' police powers "justify virtually any exercise of state or local government to preserve, protect, or promote the public's health that does not infringe constitutionally protected . . . rights"). Moreover, public health is not limited to government agencies. Private organizations also provide public health services and conduct public health research.
208. See Belmont Report, supra note 120, at 23, 193 (rejecting intent as too subjective a standard for distinguishing medical practice from medical research).
209. Id.
210. Recognizing the research components of public health surveillance does not preclude also recognizing some exceptions to the requirements for consent for the development and dissemination of information like vital statistics. However, such activities should be recognized as exceptions to general rules for research, and specifically justified by factual and conceptual arguments that do not depend upon spurious distinctions between research and practice.
211. See supra figure 1.
212. See, e.g., Hill v. Nat'l Collegiate Athletic Ass'n, 865 P.2d 633, 658 (Cal. 1994) (recognizing an informational privacy interest "in limiting disclosure of confidential information about bodily condition"); Alberts v. Devine, 479 N.E.2d 113, 118-19 (Mass. 1985) (describing a public policy rationale for recognizing a physician's duty to not disclose medical information without the patient's consent). See generally DANIEL J. SOLOVE & MARC ROTENBERG, INFORMATION PRIVACY LAW 207-10 (2003). State constitutions also often protect privacy more explicitly than the Federal Constitution. See, e.g., CAL. CONST. art. 1, § 1 ("All people are by nature free and independent and have inalienable rights. Among these are ... pursuing and obtaining safety, happiness, and privacy.").
213. See, e.g., Doe v. Delie, 257 F.3d 309, 317 (3d Cir. 2001) (holding that prisoners have a constitutional right of privacy in their medical information); Sterling v. Borough of Minersville, 232 F.3d 190, 197 (3d Cir. 2000) (same); Denius v. Dunlap, 209 F.3d 944, 956 (7th Cir. 2000) (stating that the right of confidentiality "clearly covers medical records and communications"); Bartnicki v. Vopper, 200 F.3d 109, 122 (3d Cir. 1999) (recognizing the right "not to have intimate facts concerning one's life disclosed without one's consent"), aff'd, 532 U.S. 514 (2001); Doe v. Se. Pa. Transp. Auth., 72 F.3d 1133, 1138 (3d Cir. 1995) (acknowledging a limited constitutional right to privacy in one's prescription records); A.L.A. v. W. Valley, 26 F.3d 989, 990 (10th Cir. 1994) ("There is no dispute that confidential medical information is entitled to constitutional privacy protection."); Doe v. City of New York, 15 F.3d 264, 267 (2d Cir. 1994) ("Individuals who are infected with the HIV virus clearly possess a constitutional right to privacy regarding their condition."); Schaill v. Tippecanoe County Sch. Corp., 864 F.2d 1309, 1322 n.19 (7th Cir. 1989) (recognizing "a substantial privacy interest in the confidentiality of medical information"); In re Search Warrant (Sealed), 810 F.2d 67, 71 (3d Cir. 1987) (stating that the constitutionally protected right to privacy encompasses medical records); Trade Waste Mgmt. Ass'n v. Hughey, 780 F.2d 221, 234 (3d Cir. 1985) (recognizing that personal medical history is protected from random government intrusion). But see Doe v. Wigginton, 21 F.3d 733, 740 (6th Cir. 1994) (holding that a prison official's disclosure of a prisoner's HIV status to other corrections officers did not violate the prisoner's constitutional right to privacy); J.P. v. DeSanti, 653 F.2d 1080, 1090 (6th Cir. 1981) ("[T]he Constitution does not encompass a general right to nondisclosure of private information.").
214. See, e.g., Nw. Mem'l Hosp. v. Ashcroft, 362 F.3d 923, 932-33 (7th Cir. 2004) (affirming the district court's decision to quash a Department of Justice subpoena seeking the medical records of patients who had received late-term abortions); Aid for Women v. Foulston, 427 F. Supp. 2d 1093, 1096 (D. Kan. 2006) (permanently enjoining enforcement of the Attorney General's opinion that physicians must report all consensual underage sexual activity because his opinion was inconsistent with the reporting statute's language).
215. 429 U.S. 589 (1977).
216. Id. at 603-04; see also N.Y. PUB. HEALTH LAW §§ 3331(6), 3332(2)(a), 3334(4) (McKinney 2002). Prescriptions were filed with the Bureau of Controlled Substances, Licensing and Evaluation. Schedule II drugs include drugs that have some recognized medical uses, but are also subject to some potential for abuse: opium and its derivatives, cocaine, methadone, amphetamines, and methaqualone. Whalen, 429 U.S. at 592-93 & n.8.
217. Whalen, 429 U.S. at 598 & n.23. Petitioners claimed that the law violated both their right to informational privacy - by taking their personal information without their consent - and their right to make personal decisions about their own medical care without government interference. Id. at 599-600. They argued that the requirement discouraged physicians from prescribing necessary and appropriate Schedule II drugs, and discouraged patients from accepting treatment with such drugs for fear of being stigmatized. Id. at 595 n.16, 600.
218. Id at 591-92.
219. Id. at 597-98.
220. Id. at 598 (footnote omitted); see also ACT-UP Triangle v. Comm'n for Health Servs. of N.C., 483 S.E.2d 388, 396 (N.C. 1997) (upholding the state health commission's decision to end anonymous HIV testing by local health departments and institute confidential reporting of names); cf. N.Y. State Soc'y of Surgeons v. Axelrod, 572 N.E.2d 605, 606-07 (N.Y. 1991) (upholding the Commissioner of Health's exercise of discretion in refusing to add HIV infection to the list of notifiable diseases "on the ground that ... it would discourage cooperation of affected individuals and would lead to the loss of confidentiality for those infected with the disease").
221. Whalen, 429 U.S. at 602.
222. Id. at 602 n.29. But cf. id. at 607 (Brennan, J., concurring) ("The central storage and easy accessibility of computerized data vastly increase the potential for abuse of that information, and I am not prepared to say that future developments will not demonstrate the necessity of some curb on such technology.").
223. 428 U.S. 52 (1976).
224. Id. at 80-81 (emphasis added) (footnote omitted).
225. See, e.g., Thornburgh v. Am. Coll. of Obstetricians & Gynecologists, 476 U.S. 747 (1968). In Thornburgh, the Court struck down a Pennsylvania statute requiring physicians to report information about abortion procedures. The information, which would be made available for public inspection, included each woman's age, race, marital status, and number of prior pregnancies; the date of her last menstrual period; the basis for any determination that the fetus was not viable; and the method of payment - but not the woman's name or address. See id. at 767-68.
226. 505 U.S. 833 (1992).
227. Id. at 900. The statute at issue in Casey provided: "For the purpose of promotion of maternal health and life by adding to the sum of medical and public health knowledge through the compilation of relevant data, and to promote the Commonwealth's interest in protection of the unborn child, a report of each abortion performed shall be made to the department on forms prescribed by it. The report forms shall not identify the individual patient by name ..." 18 PA. CONS. STAT. § 3214(a) (1990), quoted in Casey, 505 U.S. at 909-10.
228. Casey, 505 U.S. at 901.
229. Whalen, 429 U.S. at 599-600.
230. See Pierce v. Soc'y of Sisters, 268 U.S. 510, 534-35 (1925).
231. See Loving v. Virginia, 388 U.S. 1, 12 (1967).
232. See Roe v. Wade, 410 U.S. 113, 164 (1973);
233. Griswold v. Connecticut, 381 U.S. 479, 485 (1965).
234. Walls v. City of Petersburg, 895 F.2d 188, 192 (4th Cir. 1990);
235. see also Sheets v. Salt Lake County, 45 F.3d 1383, 1387 (10th Cir. 1995) ("If an individual has a legitimate expectation of confidentiality, then '[disclosure of such information must advance a compelling state interest which, in addition, must be accomplished in the least intrusive manner.'" (alteration in original) (quoting Mangels v. Pena, 789 F.2d 836, 839 (10th Cir. 1986))); Fraternal Order of Police, Lodge No. 5 v. City of Phila, 812 F.2d 105, 110 (3d Cir. 1987) ("Most circuits appear to apply an 'intermediate standard of review' for the majority of confidentiality violations, with a compelling interest analysis reserved for 'severe intrusions' on confidentiality." (citations omitted)).
236. See Cruzan v. Dir., Mo. Dep't of Health, 497 U.S. 261, 278 (1990); see also Vacco v. Quill, 521 U.S. 793, 797 (1997) (holding that New York's prohibition on assisting suicide does not violate the Equal Protection Clause, even though patients have a constitutional right to refuse lifesaving medical treatment).
237. See Cruzan, 497 U.S. at 269-73. See generally GEORGE J. ANNAS, THE RIGHTS OF PATIENTS 246-72 (3d ed. 2004).
238. Tucson Woman's Clinic v. Eden, 379 F.3d 531, 553 (9th Cir. 2004).
239. Id. at 551.
240. Id. at 551-52.
241. Id. at 552.
242. Id.
243. Id. at 553. The court also found that Arizona regulations requiring abortion providers to submit to warrantless, unbounded inspections of their offices violated the Fourth Amendment. Id. at 551. The court concluded that abortion clinics were not a closely regulated industry, where expectations of privacy are diminished. Id. at 550. Rather, "the expectation of privacy is heightened, given the fact that the clinic provides a service grounded in a fundamental constitutional liberty, and that all provision of medical services in private physicians' offices carries with it a high expectation of privacy for both physician and patient." Id. Fourth Amendment issues are beyond the scope of this Article.
244. Id. at 553.
245. Id.
246. See also Planned Parenthood of S. Ariz. v. Lawall, 307 F.3d 783, 794 (9th Cir. 2002) (Ferguson, J, dissenting) ("[I]t is not only disclosure that is prohibited. It is intrusion itself .... Simple curiosity or suspicion, the need to keep statistics, or the mere performance of government work is not enough to justify the intrusion permitted by the Arizona statute. The state must show a particularized, legitimate government need.").
247. United States v. Westinghouse Elec. Corp., 638 F.2d 570, 578 (3d Cir. 1980).
248. Statutes authorizing agencies to subpoena medical records for certain investigations, such as medical licensure violations, are distinct from general reporting laws. The subpoena power granted to many public agencies poses a lesser risk, primarily because those affected have an opportunity to challenge the subpoena and receive a judicial hearing. See, e.g., Schachter v. Whalen, 581 F.2d 35, 36-37 (2d Cir. 1978) (upholding the statutory power of a state medical licensure board to subpoena records of patients treated with laetrile or MA-7 by a particular physician as part of its investigation of the physician's professional conduct).
249. Westinghouse, 638 F.2d at 572.
250. The majority of decisions referencing the Westinghouse factors involve demands to review information about particular individuals, such as applicants for employment. See, e.g., Weissberg v. Riverside Twp. Bd. of Educ., 180 F. App'x 357, 365 (3d Cir. 2006). But see Sterling v. Borough of Minersville, 232 F.3d 190, 195 (3d Cir. 2000) ("We cautioned, however, that the right [in Westinghouse] is not absolute. Public health or like public concerns may justify access to information an individual may desire to remain confidential.").
251. Westinghouse, 638 F.2d at 573.
252. Protection against revealing identities may prove increasingly difficult to maintain. See Latanya Sweeney, Maintaining Patient Confidentiality When Sharing Medical Data Requires a Symbiotic Relationship Between Technology and Policy 3-15 (MIT Artificial Intelligence Lab., Working Paper No. AIWP-WP344b, 1997), available at http://privacy.cs.cmu.edu/dataprivacy/ projects/law/aiwp.pdf (comparing various methods intended to de-identify medical record data, and describing ways to identify individuals with limited information, such as birth date and zip code). It is even possible to identify the addresses of patients represented only by black dots on a map. John S. Brownstein et al. Correspondence, No Place To Hide - Reverse Identification of Patients from Published Maps, 355 NEW ENG. J. MED. 1741, 1741-42 (2006) (selecting nineteen medical journal articles that contained "maps with the addresses of patients plotted as individuals dots," and determining the precise address of 432 of the 550 patients plotted on those maps).
253. See discussion supra Part II.
254. For an argument favoring a broad interpretation of public health, see Gostin, supra note 76, at 1168-69 (arguing that immediate risks to society from bioterrorism warrant violating some personal liberties). For arguments favoring continuing protection of personal liberties, see Wendy E. Parmet, Liberalism, Communitarianism, and Public Health: Comments on Lawrence O. Gostin's Lecture, 55 FLA. L. REV. 1221, 1223 (2003); Peter P. Swire & Lauren B. Steinfeld, Security and Privacy After September 11: The Health Care Example, 86 MINN. L. REV. 1515, 1518-23 (2002).
255. See, e.g., Richard A. Posner, The Right of Privacy, 12 GA. L. REV. 393, 409 (1978) (offering an economic analysis of privacy rights). The many statutes enacted to protect the privacy of information since the early 1970s, however, suggest that society may value information privacy more than rational economic analysis would predict. Moreover, on the bench, Judge Posner has expressed a more sympathetic view of privacy rights. See Nw. Mem'l Hosp. v. Ashcroft, 362 F.3d 923, 932-33 (7th Cir. 2004) (protecting the privacy of medical records requested for use in challenging the constitutionality of the Partial-Birth Abortion Ban Act).
256. See Ferguson v. City of Charleston, 532 U.S. 67, 82-83 (2001) ("While the ultimate goal of the program may well have been to get the women in question into substance abuse treatment and off of drugs, the immediate objective of the searches was to generate evidence for law enforcement purposes in order to reach that goal").
257. This is also consistent with the holding in Whalen, where the defendant used prescription drug records to investigate possible crimes. See supra note 135 and accompanying text.
258. The use of case reports to obtain an accurate count of all cases of disease has disadvantages. The most salient is that it cannot count people who are not in medical care, because it relies on health providers and laboratories to submit all reports. See COMM. ON THE RYAN WHITE CARE ACT: DATA FOR RES. ALLOCATION, PLANNING & EVALUATION, INST, OF MED., MEASURING WHAT MATTERS 80 (2004), available at http://www.nap.edu/catalog/10855.html.
259. The CDC states that "[c]ancer surveillance is essential to a unified, scientific and public health approach to cancer prevention and control." NPCR-CSS, supra note 98. Although presented as a premise, the CDC's statement is a conclusion, and the evidence for it is not provided. Assuming it is correct, however, it does not answer the question of whether surveillance requires the use of case reports or whether it requires patient consent. Cancer registries remain a repository for data that, without more, cannot prevent or control cancer.
260. See generally Bruce K. Armstrong, Perspective: The Role of the Cancer Registry in Cancer Control, 3 CANCER CAUSES & CONTROL 569 (1992).
261. A more difficult question is whether the fact that technology makes it easier and cheaper to screen for many conditions simultaneously rather than separately warrants including the untreatable conditions in a mandatory program.
262. See George J. Annas, Puppy Love: Bioterrorism, Civil Rights, and Public Health, 55 FLA. L. REV. 1171, 1179-82 (2003) (arguing that public health programs cannot succeed without retaining the public's trust).
263. See ALAN F. WESTIN, PRIVACY AND FREEDOM 7 (1967) ("Privacy is the claim of individuals, groups, or institutions to determine for themselves when, how, and to what extent information about them is communicated to others.");
264. Geoffrey R. Stone, The Scope of the Fourth Amendment: Privacy and the Police Use of Spies, Secret Agents, and Informers, 1976 AM. B. FOUND. RES. J. 1193, 1207 (describing the right to privacy as a person's right "to control the flow of information about him").
265. See, e.g., CHARLES FRIED, AN ANATOMY OF VALUES: PROBLEMS OF PERSONAL AND SOCIAL CHOICE 142 (1970) (arguing that privacy is necessary to the values of love, friendship, and trust, which require intimacy and sharing private information);
266. PRIVACY PROT. STUDY COMM'N, PERSONAL PRIVACY IN AN INFORMATION SOCIETY 21 (1977) (stating that privacy can be both "a societal value and . . . an individual interest");
267. JEFFREY ROSEN, THE UNWANTED GAZE: THE DESTRUCTION OF PRIVACY IN AMERICA 200-12 (2000) (describing privacy as a means to avoid being judged unfairly on isolated bits of data, a retreat to permit personal identity growth, and protection against offenses to one's dignity);
268. Ken Gormley, One Hundred Years of Privacy, 1992 WIS. L. REV. 1335, 1340 (arguing that legal privacy consists of five interrelated species);
269. Robert C Post, Three Concepts of Privacy, 89 GEO. L.J. 2087, 2087 (2001) ("Privacy is a value so complex, so entangled in competing and contradictory dimensions, so engorged with various and distinct meanings, that I sometimes despair whether it can be usefully addressed at all.");
270. William L. Presser, Privacy, 48 CAL. L. REV. 383, 389 (1960) ("The law of privacy comprises four distinct kinds of invasion of four different interests of the plaintiff, which are tied together by the common name, but otherwise have almost nothing in common except that each represents an interference with the right of the plaintiff, in the phrase coined by Judge Cooley, 'to be let alone."' (footnote omitted));
271. Daniel J. Solove, Conceptualizing Privacy, 90 CAL. L. REV. 1087, 1126-29 (2002) (arguing that privacy can best be conceptualized not by isolating its essential characteristics, but rather by examining the various specific contexts in which it plays a role).
272. Nixon v. Adm'r of Gen. Servs., 433 U.S. 425, 457 (1977) (quoting Whalen v. Roe, 429 U.S. 589, 599 (1977)).
273. See Samuel D. Warren & Louis D. Brandeis, The Right to Privacy, A HARV. L. REV. 193, 196 (1890);
274. see also Olmstead v. United States, 277 U.S. 438, 478 (1928) (Brandeis, J., dissenting).
275. See Nw. Mem'l Hosp. v. Ashcroft, 362 F.3d 923, 929 (7th Cir. 2004) ("Even if there were no possibility that a patient's identity might be learned from a redacted medical record, there would be an invasion of privacy.").
276. For discussion of the concept of information as property and the use of DNA, see generally ROBERT F. WEIR & ROBERT S. OLICK, THE STORED TISSUE ISSUE: BIOMEDICAL RESEARCH, ETHICS, AND LAW IN THE ERA OF GENOMIC MEDICINE (2004);
277. Gary E. Marchant, Property Rights and Benefit-Sharing for DNA Donors?, 45 JURIMETRICS J. 153 (2005).
278. Galison and Minow make a related argument that privacy "takes its significance from its association with a widely (but not universally) shared notion of self." Peter Galison & Martha Minow, Our Privacy, Ourselves in the Age of Technological Intrusions, in HUMAN RIGHTS IN THE 'WAR ON TERROR,' supra note 8, at 258, 284.
279. Alan F. Westin, Social and Political Dimensions of Privacy, 59 J. SOC. ISSUES 431, 433 (2003).
280. For example, contraception, once the subject of criminal prohibition, is generally considered a matter for personal choice without public or government interference. See id. at 438;
281. see also James A. Morone, Morality, Politics, and Health Policy, in POLICY CHALLENGES IN MODERN HEALTH CARE 13, 14 (David Mechanic et al. eds., 2005).
282. In Pierce County, Washington v. Guillen, 537 U.S. 129 (2003), a unanimous Court noted that data compiled by state highway departments for the purpose of applying for federal funds should not be used as an effort-free tool in litigation against the state.
283. See id. at 146. Although the case concerned the meaning of the state's statutory evidentiary privilege, the Court's opinion stressed that the data collected by the state should not be accessible to third parties unless they were otherwise entitled to obtain the information from the state for independent reasons.
284. See id.
285. Surveys of public opinion on privacy are notoriously unreliable, largely because how the questions are framed can influence responses. Nonetheless, there is considerable evidence of public support for medical record privacy. See supra note 50 and accompanying text;
286. see also Standards for Privacy of Individually Identifiable Health Information, Background, 65 Fed. Reg. 82,462, 82,463 (2000) (summarizing testimony presented during a hearing on a proposed HIPAA rule in favor of increased protection for medical records).
287. Whalen v. Roe, 429 U.S. 589, 602 (1977).
288. See Galison & Minow, supra note 181, at 261 ("Without deliberate effort, a downward spiral can become a vicious circle, eroding privacy through legal permission, technological access to unprecedented amounts of personal information, and diminishing public expectations of privacy.").
289. The International Bill of Human Rights, available at http://www.ohchr. org/english/about/publications/docs/part1_1.pdf, is composed of the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social and Cultural Rights.
290. International Covenant on Economic, Social and Cultural Rights, G.A. Res. 2200A (XXI), art. 4, U.N. GAOR, 21st Sess., Supp. No. 16, U.N. Doc. A/6316 (Dec. 16, 1966), available at http://www.unhchr.ch/html/menu3/b/a_cescr. htm ("[T]he State may subject such rights only to such limitations as are determined by law only in so far as this may be compatible with the nature of these rights and solely for the purpose of promoting the general welfare in a democratic society.").
291. For discussion of the human right to health, see generally Sofia Gruskin & Daniel Tarantola, Health and Human Rights, in PERSPECTIVES ON HEALTH AND HUMAN RIGHTS 3 (Sofia Gruskin et al. eds., 2005);
292. Eleanor D. Kinney, The International Human Right to Health: What Does This Mean for Our Nation and World?, 34 IND. L. REV. 1457 (2001).
293. U.N. Econ. & Soc. Council [ECOSOC], Comm. on Econ., Soc & Cultural Rights, Report on the Twenty-Second, Twenty-Third and Twenty-Fourth Sessions, annex IV, ¶ 28, U.N. Doc E/2001/22, E/C.12/2000/21 (2001).
294. The Ryan White CARE Act may place additional financial pressure on states that seek funding for HIV and AIDS treatment programs. Pursuant to the Act, Department of Health and Human Services funding is distributed according to an allocation formula based on the estimated number of cases in an area, "as indicated by the number of cases reported to and confirmed by" the CDC. 42 U.S.C. § 300ff-28(a)(2) (2000);
295. see also supra note 38 and accompanying text. The statute does not require any state to report to the CDC Nor does it specify what form any voluntary reports should take. Nevertheless, the CDC interprets its mandate to "confirm" cases (together, perhaps, with its conditions on separate funding for state surveillance programs) as allowing it to insist that states submit data from case reporting systems that themselves require reporting patient names to the state health department. Since states must enact legislation to compel named reporting, the effect is to pressure states to enact mandatory named reporting laws in order to obtain funding, not for surveillance, but for AIDS treatment programs.
296. See, e.g., South Dakota v. Dole, 483 U.S. 203, 212 (1987);
297. Oklahoma v. U.S. Civil Serv. Comm'n, 330 U.S. 127, 143 (1947).
298. See Dole, 483 U.S. at 213 (O'Connor, J., dissenting);
299. Lynn A. Baker, Conditional Federal Spending After Lopez, 95 COLUM. L. REV. 1911, 1914 (1995) ("[W]ith Dole, the Court offered Congress a seemingly easy end run around any restrictions the Constitution might impose on its ability to regulate the states.").
300. But see Erwin Chemerinsky, Protecting the Spending Power, A CHAP. L. REV. 89, 90-93 (2001) (arguing for a broad interpretation of the spending power).
301. Although a state might argue that it was compelled to accept the condition because of its need for funding, this type of financial pressure has not yet been viewed as pressure that '"turns into compulsion.'" Dole, 483 U.S. at 211 (quoting Steward Mach. Co. v. Davis, 301 U.S. 548, 590 (1937));
302. see also Michael T. Gibson, Congressional Authority To Induce Waivers of State Sovereign Immunity: The Conditional Spending Power (and Beyond), 29 HASTINGS CONST. L.Q. 439, 440 (2002).
303. Separate issues are whether a state would be willing to challenge a federal funding law at all and, if not, whether individuals would have standing to do so. In a footnote in Pierce County, Wash. v. Guillen, 537 U.S. 129 (2003), the Supreme Court declined to consider "whether private plaintiffs have standing to assert 'states' rights' under the Tenth Amendment where their States' legislative and executive branches expressly approve and accept the benefits and terms of the federal statute in question."
304. Id. at 148 n.10.