Return to the Data Council home page .(1) Philosophical and ethical sources on privacy include Ferdinand David Schoeman, editor, Philosophical Dimensions of Privacy: An Anthology (Cambridge University Press, Cambridge, 1984); and David H. Flaherty,Protecting Privacy in Surveillance Societies (University of North Carolina Press, Chapel Hill, 1989).
(2) Louis D. Brandeis and Samuel D. Warren, "The right to privacy," 4 Harvard Law Review 193–197 (1890), quoting from Thomas Cooley's Treatise on the Law of Torts of 1878. The authors were addressing the new privacy threat from unannounced photography.
(3) Alan F. Westin, Privacy and Freedom, p. 7 (Atheneum, New York, 1967).
(4) Lawrence O. Gostin, p. 454 of "Health information privacy," Cornell Law Review 80, 451–528 (1995).
(5) U.S. Information Infrastructure Task Force, Privacy Working Group, Information Policy Committee, "Privacy and the National Information Infrastructure: Principles for providing and using personal information," § I.A.2 (National Telecommunications and Information Administration, U.S. Department of Commerce, Washington, DC, June 6, 1995). Available on the Internet at < http://www.iitf.nist.gov/ipc/ipc-pubs/niiprivprin_final.html >.
(6) Alan F. Westin, Computers, Health Records, and Citizen Rights, National Bureau of Standards Monograph 157, p. 6 (U.S. Government Printing Office, Washington, DC, 1976).
(7) Form NIH-2753 (10-94).
(8) U.S. National Institutes of Health, Office for Protection from Research Risks, Protecting Human Research Subjects: Institutional Review Board Guidebook, p. 3-27 (U.S. National Institutes of Health, Bethesda, Maryland, 1993 with later addenda).
(9) National Research Council, Committee on Maintaining Privacy and Security in Health Care Applications of the National Information Infrastructure, Computer Science and Telecommunications Board, For the Record: Protecting Electronic Health Information, p. 1-1 (National Academy Press, Washington, DC, March 1997).
(10) Alan F. Westin, as cited in endnote (6).
(11) Willis Ware, "Lessons for the future: Privacy dimensions of medical record keeping," Proceedings, Conference on Health Records: Social Needs and Personal Privacy, sponsored by the Department of Health and Human Services, p. 44 (U.S. Government Printing Office, Washington, DC, 1993).
(12) An early formulation of such principles as a list was U.S. Department of Health, Education, and Welfare, Secretary's Advisory Committee on Automated Personal Data Systems, Records, Computers, and the Rights of Citizens (U.S. Government Printing Office, Washington, DC, 1973). For history and commentary on fair information practices see U.S. Congress, House of Representatives, Committee on Government Operations, "Health Security Act Report," H.R. Report No. 103–601, pp. 81–82 (1994), in which the hand of Robert M. Gellman is clearly discernable.
(13) An excellent general review is Lawrence O. Gostin, as cited in endnote (4).
(14) During the course of this study the author was dismayed at the number of people, encountered in passing, who mentioned that they have stopped going to their gynecologists, for instance, or mistrust screening or counseling programs, or are reluctant to ask reimbursement for health care, because they "know" that medical confidences will not be respected, or because they fear negative discrimination. Sad to say, their apprehensions may be justified.
(15) Classic sources are Robert J. Levine, Ethics and Regulation of Clinical Research, Second Edition (Urban and Schwarzenberg, Baltimore, 1986); and Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, Third Edition (Oxford University Press, New York and Oxford, 1989).
(16) Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, volume 2, pp. 181–182 (U.S. Government Printing Office, Washington, DC, 1949).
(17) World Medical Association, "Declaration of Helsinki," latest revision 1989, available on the Internet at < http://www.ncgr.org/gpi/odyssey/heldec.html >.
(18) U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, "The Belmont Report: Ethical Principles for the Protection of Human Subjects," DHEW Publication No. (OS) 78-0012, with Appendices (OS) 78-0013 and (OS) 78-0014 (U.S. Government Printing Office, Washington, DC, 1978); the Report also was published in Federal Register 44, 23192–23197 (1979).
(19) Alan F. Westin, as cited in endnote (6).
(20) U.S. Privacy Protection Study Commission, Personal Privacy in an Information Society, pp. 290–291 (U.S. Government Printing Office, Washington, DC, July 1977).
(21) Ibid., pp. 15–21.
(22) U.S. Congress, Office of Technology Assessment, Protecting Privacy in Computerized Medical Information, Report No. OTA-TCT-576 (U.S. Government Printing Office, Washington, DC, September 1993).
(23) David H. Flaherty discusses these listed and more, in Protecting Privacy in Surveillance Societies (University of North Carolina Press, Chapel Hill, 1989).
(24) The notion of science's compact with society was developed in William W. Lowrance, Modern Science and Human Values, pp. 78–89 (Oxford University Press, New York and Oxford, 1985).
(25) U.S. National Institutes of Health, Office of Human Subjects Research, preface to "Guidelines" brochure (1995).
(26) NCHS Staff Manual on Confidentiality, p. 5.
(27) John P. Fanning, personal communication.
(28) United States v. Westinghouse Electric Corp., 638 F.2d 578 (Third Circuit, 1980).
(29) Kerr L. White, Healing the Schism: Epidemiology, Medicine, and the Public's Health (Springer-Verlag, New York, Berlin, and Heidelberg, 1991).
(30) Lawrence O. Gostin, as cited in endnote (4).
(31) One appreciates the remark, the validity of which is now fading, by the distinguished physician Sir Douglas Black (personal communication): "The only privacy protection the poor patient has left is the doctor's bad handwriting."
(32) Institute of Medicine, Richard S. Dick and Elaine B. Steen, editors, The Computer-based Patient Record: An Essential Technology for Health Care (National Academy Press, Washington, DC, 1991). A distinctive aspect of this report is its promotion of computer-based medical records, beyond merely computerized versions of traditional records. (A Revised Edition is forthcoming, 1997.)
(33) Institute of Medicine, Committee on Evaluating Clinical Applications of Telemedicine; Marilyn J. Field, editor,Telemedicine: A Guide to Assessing Telecommunications in Health Care (National Academy Press, Washington, DC, 1996).
(34) The European Union Data Privacy Directive (95/46/EC) at Article 2(b) defines "processing" as being "any operation or set of operations which is performed upon personal data, whether or not by automatic means, such as collection, recording, organization, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, blocking, erasure or destruction."
(35) U.S. Department of Health and Human Services, Task Force on the Privacy of Private-Sector Records, Final Report, p. 4 (report prepared under HHS Contract # 100-91-0036 by Kunitz and Associates, Inc., 6001 Montrose Road, Suite 920, Rockville, Maryland 20852, September 1995).
(36) U.S. Health Care Financing Administration, Bureau of Data Management and Strategy, Data Users Reference Guide (HCFA, Baltimore, Maryland, September 1995), and Overview of Health Care Financing Administration Data: Resource Guide (HCFA, Baltimore, Maryland, April 1996).
(37) Jeffrey L. Carson and Brian L. Strom, "Medicaid databases," pp. 199–216 of Brian L. Strom, editor,Pharmacoepidemiology, Second Edition (John Wiley & Sons, Chichester and New York, 1994).
(38) Several hundred databases were surveyed and described in a series of International Drug Benefit/Risk Data Resource Handbooks (covering North America, Europe, Japan, Australia, and New Zealand) prepared under the auspices of the International Medical Benefit/Risk Foundation, Geneva. Information on the Handbooks can be obtained from Dr. Judith K. Jones, The Degge Group, Ltd., 1616 North Fort Meyer Drive, Arlington, Virginia 22209-3109.
(39) Stephen B. Thacker, p. 3 in "Historical development," pp. 3–17 of Steven M. Teutsch and R. Elliott Churchill, editors, Principles and Practice of Public Health Surveillance (Oxford University Press, New York and Oxford, 1994). This book, written mostly by experts at the U.S. Centers for Disease Control and Prevention, is an excellent overview.
(40) A recent "viewpoint" essay on this from the CDC was Dixie E. Snider, Jr. and Donna F. Stroup, "Defining research when it comes to public health," Public Health Reports 112, 29–32 (1997); a "counterpoint" essay was Wendy K. Mariner, "Public confidence in public health research ethics," Public Health Reports 112, 33–36 (1997).
(41) The CDC's weekly Mortality and Morbidity Report and much related CDC information is available on the Internet at < http://www.cdc.gov/epo/mmwr/mmwr.html >.
(42) Page 188 of "Ethical issues," in Teutsch and Churchill, as cited in endnote (39).
(43) Public Health Service Act § 308(d); 42 United States Code 242m(d).
(44) U.S. Department of Health and Human Services, "Directory of Minority Health and Human Services Data Resources," prepared under U.S. Agency for Health Care Policy and Research contract No. 282-90-0031 by Moshman Associates, Inc., of Bethesda, Maryland (October 1995); published only on the Internet at < http://www.hhs.gov/progorg/aspe/minority/ >.
(45) For research examples and ethical context, see Jonathan R. Sugarman, Martha Holliday, Andrew Ross, and Doni Wilder, "Improving health data among American Indians and Alaska Natives: An approach from the Pacific Northwest" and other chapters in Audrey R. Chapman, editor, Health Care and Information Ethics: Protecting Fundamental Human Rights (Sheed & Ward, Kansas City, Missouri, April 1997).
(46) U.S. Centers for Disease Control and Prevention, "Addressing emerging infectious disease threats: A prevention strategy for the United States," Preface (CDC, 1600 Clifton Road, Atlanta, Georgia 30333, 1994); available on the Internet at <http://www.cdc.gov/ncidod/publications/eid_plan/home.htm >. For general background see Institute of Medicine; Joshua Lederberg, Robert E. Shope, and Stanley C. Oakes, Jr., editors, Emerging Infections: Microbial Threats to Health in the United States (National Academy Press, Washington, DC, 1992).
(47)A gripping book not to read before trying to sleep is Laurie Garrett, The Coming Plague: Newly Emerging Diseases in a World Out of Balance (Farrar, Straus and Giroux, New York, 1994).
(48) Primary investigator, Dr. J. Richard Udry (University of North Carolina at Chapel Hill).
(49) For many illustrations of how analysis can inform health care policy and delivery see Roberta Wyn, E. Richard Brown, and Hongjian Yu, "Women's use of preventive health services," pp. 49–75, and other chapters of Marilyn M. Falik and Karen Scott Collins, editors, Women's Health: The Commonwealth Fund Survey (The Johns Hopkins University Press, Baltimore and London, 1996).
(50) A very readable set of case essays is Howard S. Frazier and Frederick Mosteller, Medicine Worth Paying For: Assessing Medical Innovations (Harvard University Press, Cambridge, Massachusetts and London, 1995).
(51) Michael F. Drummond, Greg L. Stoddart, and George W. Torrance, Methods for the Economic Evaluation of Health Care Programs (Oxford Medical Publications, Oxford, 1992).
(52) The Guidelines and much other related information from the AHCPR are available on the Internet at <http://www.ahcpr.gov/guide/ >.
(53) Bert Spilker, Guide to Clinical Trials (Raven Press, New York, 1991).
(54) Robert T. Chen, Suresh C. Rastogi, John R. Mullen, Scott W. Hayes, Stephen L. Cochi, Jerome A. Donlon, and Steven G. Wassilak, "The Vaccine Adverse Event Reporting System (VAERS)," Vaccine 12, 542–551 (1994). Information on VAERS is available on the Internet at < http://www.fda.gov/cber/vaerstxt.html >.
(55) For general background on data needed for analyzing vaccine effects, see Institute of Medicine, Vaccine Safety Committee; Kathleen R. Stratton, Cynthia J. Howe, and Richard B. Johnston, Jr., editors, Adverse Events Associated with Childhood Vaccines: Evidence Bearing on Causality (National Academy Press, Washington, DC, 1993).
(56) Brian L. Strom, p. 3 of "What is pharmacoepidemiology?" pp. 1–13 of Strom, as cited in endnote (37).
(57) Marthe R. Gold, Joanna E. Siegel, Louise B. Russell, and Milton C. Weinstein, editors, Cost-Effectiveness in Health and Medicine (Oxford University Press, New York, 1996).
(58) Laura A. Genduso and James G. Kotsanos, "Review of health economic guidelines in the form of regulations, principles, policies, and positions," Drug Information Journal 30, 1003–1016 (1996).
(59) NRC, Computer Science and Telecommunications Board, as cited in endnote (9).
(60) As many researchers said to the author in interviews during this study.
(61) "Dear Colleague Letter," OPRR Reports, p. 3 (December 26, 1984).
(62) Alexander M. Walker, "Generic data," Pharmacoepidemiology and Drug Safety 4, 265–267 (1995).
(63) Page 1787 of Ellen Wright Clayton, Karen K. Steinberg, Muin J. Khoury, Elizabeth Thomson, Lori Andrews, Mary Jo Ellis Kahn, Loretta M. Kopelman, and Joan O. Weiss, "Informed consent for genetic research on stored tissue samples," Journal of the American Medical Association 274, 1786–1792 (1995).
(64) National Research Council, Panel on Confidentiality and Access of the Committee on National Statistics, and the Social Sciences Research Council; George T. Duncan, Thomas B. Jabine, and Virginia de Wolf, editors, Private Lives and Public Policies: Confidentiality and Accessibility of Government Statistics (National Academy Press, Washington, DC, 1993).
(65) K. Pommerening, M. Miller, I. Schmidtmann, and J. Michaelis, "Pseudonyms for cancer registries," Methods of Information in Medicine 35, 112–121 (1996).
(66) The basic policy for the Department of Health and Human Services is codified at 45 Code of Federal Regulations 46, subpart A. Other subparts cover protections for fetuses and pregnant women (subpart B), prisoners (subpart C), and children (subpart D), and deal with such issues as in-vitro fertilization (subpart B). The Rule's generic provisions are designated in the form "§_.000," with the generic rules given to the right of the decimal, after the regulation part number assigned by the particular agency. The Common Federal Rule with its preamble reasoning was published in Federal Register 56, 28002–28032 (1991).
Food and Drug Administration regulations appear at 21 Code of Federal Regulations 50 (informed consent) and 56 (Institutional Review Boards), and elsewhere.
(67) Aspects of practice, regulation, and ethical principle are helpfully woven together in Office for Protection from Research Risks, U.S. National Institutes of Health, Protecting Human Research Subjects: Institutional Review Board Guidebook (U.S. National Institutes of Health, Bethesda, Maryland, 1993, with later addenda).
(68) A classic source is Ruth R. Faden and Thomas L. Beauchamp, A History and Theory of Informed Consent (Oxford University Press, New York, 1986).
(69) A three-year grant program "to stimulate investigations into the informed consent process in scientific research" (RFA OD-97-001) was announced recently: NIH Guide to Grants and Contracts 25, No. 32 (September 27, 1996).
(70) 45 Code of Federal Regulations 46(a)(5), the Federal Common Rule's informed consent requirements.
(71) Ruth Faden, p. 12 of "Keynote speech," Proceedings, "Conference on Health Records: Social Needs and Personal Privacy," sponsored by the Department of Health and Human Services (U.S. Government Printing Office, Washington, DC, 1993).
(72) Jeanette R. Davidson and Tim Davidson, p. 212 of "Confidentiality and managed care: Ethical and legal concerns," Health Social Work 21, 208–215 (1996).
(73) OPRR Guidebook, as cited in endnote (67).
(74) Gary B. Ellis, remarks to the National Bioethics Advisory Commission (October 4, 1996).
(75) OPRR Guidebook, as cited in endnote (67).
(76) OPRR Guidebook, as cited in endnote (67). This is Federal Common Rule §_.002(i).
(77) A recent critique is Harold Edgar and David J. Rothman, "The Institutional Review Board and beyond: Future challenges to the ethics of human experimentation," Milbank Quarterly 73, 489–506 (1995).
(78) For comparative analysis see Colin J. Bennett, Regulating Privacy: Data Protection and Public Policy in Europe and the United States (Cornell University Press, Ithaca, New York, 1992).
(79) For background from the view of a privacy commissioner, see Flaherty, as cited in endnote (1).
(80) "Directive 95/46/EC of the European Parliament and of the Council," Official Journal of the European Communities No. L 281, 31–50 (November 23, 1995). Available on the Internet in English, Dutch, French, German, Italian, and Spanish via the European Union Web site < http://www2.echo.lu >.
(81) A useful early review was Stefaan Callens, "The Privacy Directive and the use of medical data for research purposes," European Journal of Health Law 2, 309–340 (1995).
(82) The Member States of the E.U. are Austria, Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Luxembourg, The Netherlands, Portugal, Spain, Sweden, and the United Kingdom.
(83) A background review of U.S. law was prepared for the E.U. Commission: Paul M. Schwartz and Joel R. Reidenberg, Data Privacy Law: A Study of United States Data Protection (Mitchie Law Publishers, Charlottesville, Virginia, 1996).
(84) The Commission has requested a study of the "adequacy" issues from Prof. Yves Poullet of the University of Namur; his report is expected to be delivered soon.
(85) The organization is the Stichting Federatie van Medisch Wetenschappelijke Verenigingen. See description of the Dutch situation below.
(86) A recent recommendation on the handling of personally identifiable health data generally was Commission nationale de l'informatique et des libertés, "Deliberation no. 97-008 du 4 février 1997 portant adoption d'une recommandation sur le traitement des données de la santé à caractere personnel," Journal Officiel de la République Française, 5806–5808 (April 12, 1997).
(87) An exchange over the issues was Thilo Weichert, "Datenschutz und medizinische Forschung–Was nützt ein medizinisches Forschungsgeheimnis'?" MedR 6, 258–261 (1996), and Hans Joachim Bochnik, "Bestehen Datenschützer auf Forschungsblockaden?" MedR 6, 262–264 (1966).
(88) Bundesgesetzblatt No. 79, 3351–3355 (November 11, 1994). For commentary see J. Michaelis, "Towards nation-wide cancer registration in the Federal Republic of Germany," Annals of Oncology 6, 344–346 (1995).
(89) The Netherlands Registratiekamer, "Goed Gedrag: Gedragscode Gezondheidsonderzoek" (Registratiekamer, The Hague, The Netherlands, February 1995); "Gedragscode Gezondheidsonderzoek: Verklaring van overeenstemming inzake de gedragscode," Staatscourant 140, 14–16 (July 24, 1995).
(90) The Committee's report, including a summary in English, is available on the Internet at <http://www.skolverket.se/skolnet/dalk/engsmf.html >.
(91) U.K. Data Protection Registrar, Questions to answers: Data Protection and the E.U. Directive 95/46/EC (Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF, April 1996).
(92) U.K. Data Protection Registrar, Our Answers: Data Protection and the E.U. Directive 95/46/EC (Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF, July 1996).
(93) The Members of the Council of Europe are Albania, Andorra, Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Liechtenstein, Lithuania, Luxembourg, Malta, Moldavia, The Netherlands, Norway, Poland, Portugal, Romania, Russia, San Marino, Slovakia, Slovenia, Spain, Sweden, Switzerland, "the Former Yugoslav Republic of Macedonia," Turkey, Ukraine, and the United Kingdom.
(94) Council of Europe, "Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data," European Treaty Series No. 108 (January 28, 1981).
(95) Council of Europe, "Recommendation of the Committee of Ministers to Member States on the Protection of Medical Data," No. R (97) 5 (February 13, 1997). For context see also the "Explanatory Memoranda."
(96) For explication via another set of adjectives, see Robert M. Gellman, "Fragmented, incomplete, and discontinuous: The failure of federal privacy regulatory proposals," Software Journal 6, 199 (1993). A more recent article by Gellman is: "Can privacy be regulated on a national level? Thoughts on the possible need for international privacy rules," Villanova Law Review 41, 129–172 (1996).
(97) American Medical Association, Council on Ethical and Judicial Affairs, Code of Medical Ethics: Current Opinions with Annotations (American Medical Association, 515 North State Street, Chicago, Illinois, 1997).
(98) Public Health Service Act § 301(d); 42 United States Code 241(d).
(99) 5 United States Code 552a.
(100) 5 United States Code 552a(e)(4)(D).
(101) For critique of the Privacy Act, see Schwartz and Reidenberg, as cited in endnote (83).
(102) 5 United States Code 552.
(103) See Gostin, as cited in endnote (4), pp. 501–503.
(104) Public Health Service Act § 306(d), 42 United States Code 242K(d), does so for the National Center for Health Statistics, for example, and § 903(c), 42 United States Code 299a-1, for the Agency for Health Care Policy and Research.
(105) Public Health Service Act § 543, 42 United States Code § 290dd-2.
(106) Lawrence O. Gostin, Zita Lazzarini, Verla S. Neslund, and Michael T. Osterholm, "The public health information infrastructure," Journal of the American Medical Association 275, 1921–1927 (1996).
More detail is given in Lawrence O. Gostin, Zita Lazzarini, and Kathleen M. Flaherty, "Legislative survey of state confidentiality laws, with specific emphasis on HIV and immunization," report of a study sponsored by the U.S. Centers for Disease Control and Prevention, the Council of State and Territorial Epidemiologists, and the Task Force for Child Survival and Development of the Carter Presidential Center (July 2, 1996).
(107) U.S. Congress, Office of Technology Assessment, Protecting Privacy in Computerized Medical Information, p. 15 (Report No. OTA-TCT-576, U.S. Government Printing Office, Washington, DC, September 1993).
(108) Public Law 104-191, known as the "Kennedy–Kassebaum Act" after its Senate sponsors.
(109) If "legislation governing standards with respect to the privacy of individually identifiable health information [relating to electronically transmitted claims]" is not enacted by 36 months after this Act was enacted, the Secretary [of HHS] must promulgate final regulations containing such standards no later than 42 months after the Act was enacted. (§264).
(110) Transcripts of the hearings are available on the Internet at < http://ncvhs.hhs.gov/index.htm >.
(111) U.S. Agency for Health Care Policy and Research, Report to Congress: The Feasibility of Linking Research- Related Data Bases To Federal and Non-Federal Medical Administrative Data Bases, AHCPR Publication No. 91-0003 (AHCPR, Rockville, Maryland, April 1991).
(112) Sanjaya Kumar and Charles Lucey, "Patient privacy and secondary use of administrative databases," Letter to the Editor, Journal of the American Medical Association 276, 1138–1139 (1996).
(113) As cited in endnote (18), at (§ A).
(114) Ross J. Anderson, Security in Clinical Information Systems, p. 5 (Commissioned for the Council, British Medical Association, Tavistock Square, London WC1H 9JP, January 1996). This is a solid review in British context. Available on the Internet at < http://www.cl.cam.ac.uk/users/rja14/policy11/policy11.html >.
(115) NRC, Computer Science and Telecommunications Board, as cited in endnote (9).
(116) Recent critical discussions include George J. Annas and Sherman Elias, Gene Mapping: Using Law and Ethics as Guides (Oxford University Press, New York and Oxford, 1992); Theresa Marteau and Martin Richards, editors, The Troubled Helix: Social and Psychological Implications of the New Human Genetics (Cambridge University Press, Cambridge, 1996); Thomas H. Murray, Mark A. Rothstein, and Robert F. Murray, Jr., editors, The Human Genome Project and the Future of Health Care (Indiana University Press, Bloomington and Indianapolis, 1996); and Philip R. Reilly, Mark F. Boshar, and Steven H. Holtzman, "Ethical Issues in genetic research: Disclosure and informed consent," Nature Genetics 15, 16–20 (1997).
(117) A general resource is the program on Ethical, Legal, and Social Implications of the Human Genome Project, of the U.S. National Human Genome Research Institute; the NHGRI's home page on the Internet is < http://www. nhgri.nih.gov >. Another resource is the "Bibliography on Bioethics" maintained by the National Center for Genome Resources, available on the Internet at < http://www.ncgr.org >.
(118) For some such situations the words of Ecclesiastes (I:18) may not be too extreme: "He that increaseth knowledge increaseth sorrow." Mak'óbâh, "mental anguish."
(119) Kathy L. Hudson, Karen H. Rothenburg, Lori B. Andrews, Mary Jo Ellis Kahn, and Francis S. Collins, "Genetic discrimination and health insurance: An urgent need for reform," Science 270, 391–393 (1995).
(120) Michael S. Yesley, "Genetic privacy, discrimination and social policy: Challenges and dilemmas," Microbial and Comparative Genetics (April 1997).
(121) Peter S. Harper, "Research samples from families with genetic diseases: A proposed code of conduct," British Medical Journal 306, 1391–1394 (1993).
(122) Ellen Wright Clayton, Karen K. Steinberg, Muin J. Khoury, Elizabeth Thomson, Lori Andrews, Mary Jo Ellis Kahn, Loretta M. Kopelman, and Joan O. Weiss, "Informed consent for genetic research on stored tissue samples,"Journal of the American Medical Association 274, 1786–1792 (1995). A related commentary is: Bartha Maria Knoppers and Claude M. Laberge, "Research and stored samples: Persons as sources, samples as persons?" Journal of the American Medical Association 274, 1806–1807 (1995).
(123) In 1996 the Parliamentary Assembly of the Council of Europe adopted a " Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine," Dir/Jur (96) 7 (Strasbourg, June 1996). While dealing with many issues such as research-subject consent, the human genome, and organ transplantation, the Convention reaffirms in passing (in Article 10) that "everyone has the right to respect for private life in relation to information about his or her health"; but it does not elaborate.
(124) Mark A. Rothstein, editor, Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (Yale University Press, New Haven, forthcoming 1997).
(125) A volume being prepared under the auspices of the Ethical, Legal, and Social Implications program of the U.S. National Human Genome Research Institute and the U.S. Department of Energy is Alan F. Westin, editor, The Social Sciences, Privacy, and Genetic Information (forthcoming, Columbia University Press, New York, early 1998).
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Last updated 7/23/97.