Hostname: page-component-745bb68f8f-mzp66 Total loading time: 0 Render date: 2025-01-11T22:56:54.759Z Has data issue: false hasContentIssue false
  • English
  • Français

Law & Bioethics: From Values to Violence

Published online by Cambridge University Press:  01 January 2021

Susan M. Wolf
Get access Rights & Permissions [Opens in a new window]

Extract

Debate over the relationship of law and bioethics is growing - what the relationship has been and what it should be in the future. While George Annas has praised law and rights-talk for creating modern bioethics, Carl Schneider has instead blamed law for hijacking bioethics and stunting moral reflection. Indeed, as modern bioethics approaches the 40-year mark, historians of bioethics are presenting divergent accounts. In one account, typified by Albert Jonsen, bioethics largely grew out of philosophy and theology, not law. In another account, law has deeply shaped bioethics from the start, forging its central commitment to the rights of patients and research subjects and the fields imposition of broad fiduciary responsibilities on health care professionals and researchers.

In addition to debating how to properly describe laws historical relationship to bioethics, commentators have argued over whether laws influence in bioethics is now good or bad.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 32 , Issue 2 , Summer 2004 , pp. 293 - 306
Copyright
Copyright © American Society of Law, Medicine and Ethics 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

See, e.g., Annas, G.J., Standards of Care: The Law of American Bioethics (New York: Oxford University Press, 1993): 3 (“Law sides with patients to oppose the arbitrary use of power whether by physicians or the government; the rubric is patient rights. This is why American law, not philosophy or medicine, is primarily responsible for the agenda, development, and current state of American bioethics.”)Google Scholar
See Schneider, C.E., “Bioethics in the Language of the Law,” Hastings Center Report 24, no. 4 (1994): 16–17.CrossRefGoogle Scholar
See Jonsen, A.R., A Short History of Medical Ethics (New York: Oxford University Press, 2000): 115–20 (describing the start of modern bioethics by saying that, “Gradually, scholars from the two academic disciplines that had traditionally studied morality, philosophy and theology, began to join the scientists,” though acknowledging that a broader range of disciplines including law eventually entered the field as well); Jonsen, A.R., The Birth of Bioethics (New York: Oxford University Press, 1998): 34 (“when scholars from the classical disciplines of theology and philosophy joined those early conversations, they brought a sharper concept of ethics…. The bioethics that began to appear during the 1970s…was their creation.”). Though Jonsen credits theology and philosophy with founding modern bioethics, he also finds that, “The discipline that has mixed most prominently with bioethics has been law.” Id. at 342. Yet Jonsen directly challenges Annas’s vision of law driving bioethics. Id. at 343.Google Scholar
See, e.g., Annas, , supra note 1; Capron, A.M. Michel, V., “Law and Bioethics,” Loyola of Los Angeles Law Review 27 (1993): 25–40, 32 (finding that law has shaped bioethics, but that bioethics has also shaped law).Google Scholar
See, e.g., Callahan, D., “Religion and the Secularization of Bioethics,” Hastings Center Report 20, no. 4 (1990): S2–4; Callahan, D., “Bioethics: Private Choice and Common Good,”Hastings Center Report 24, no. 3 (1994): 28–31.CrossRefGoogle Scholar
See, e.g., Capron, A.M. Kass, L.R., “A Statutory Definition of the Standards for Determining Human Death: An Appraisal and Proposal,” University of Pennsylvania Law Review 121 (1972): 87–118; Capron, Michel, , supra note 4.CrossRefGoogle Scholar
See, e.g., Wadman, M., “Business Booms for Guides to Biology’s Moral Maze,” Nature 389 (1997): 658–59; Fox, R.C. Swazey, J.P., “Leaving the Field,”Hastings Center Report22, no. 5 (1992): 9–15; Callahan, , “Religion and the Secularization of Bioethics,” supra note 5, at S4.CrossRefGoogle Scholar
The central, though not only, federal regulation is the Common Rule, found at 45 C.F.R. pt. 42 (2003).Google Scholar
On federal and state statutes recognizing advance directives, see Meisel, A. Cerminara, K.L., The Right to Die: The Law of End-of-Life Decisionmaking (New York: Aspen Publishers, 3d ed. 2004): Chapter 7.Google Scholar
See Hafemeister, T.L. et al. , “The Judicial Role in Life-Sustaining Medical Treatment Decisions,” Issues in Law & Medicine 7 (1991): 53–72.Google Scholar
See Cruzan v. Dir., Mo. Dept. of Health, 497 U.S. 261 (1990); Vacco v. Quill, 521 U.S. 793 (1997); Washington v. Glucksberg, 521 U.S. 702 (1997).Google Scholar
See Schiavo v. Bush, No. 03–008212-CI-20 (Fla. Cir. Ct. May 5, 2004); Goodnough, A, “Florida Judge Authorizes Removal of Feeding Tube,”New York Times, May 7, 2004, at A5; Goodnough, A., “Florida: Rights in Feeding-Tube Case,” New York Times, Feb. 14, 2004, at A16; Liptak, A., “In Florida Right-to-Die Case, Legislation that Puts the Constitution at Issue,”New York Times, Oct. 23, 2003, at A20.Google Scholar
See Andrews, L.B., “The Current and Future Legal Status of Cloning,” commissioned paper in Cloning Human Beings: Report and Recommendations of the National Bioethics Advisory Commission (Rockville, MD: 1997), available at <http://www.georgetown.edu/research/nrcbl/nbac/pubs.html> (last visited April 26, 2004); National Bioethics Advisory Commission, Cloning Human Beings: Report and Recommendations of the National Bioethics Advisory Commission (Rockville, MD: 1997), available at <http://www.georgetown.edu/research/nrcbl/nbac/pubs.html> (last visited April 26, 2004); President’s Council on Bioethics, Human Cloning and Human Dignity: An Ethical Inquiry (Washington, DC: 2002), available at <http://www.georgetown.edu/research/nrcbl/nbac/pubs.html> (last visited April 26, 2004) [hereinafter “President’s Council on Bioethics, Human Cloning”].Google Scholar
See Elhauge, E., “Allocating Health Care Morally,” California Law Review 82 (1994): 1449–1544.Google Scholar
See Hall, M.A., “Law, Medicine, and Trust,” Stanford Law Review 55 (2002): 463–527.Google Scholar
See Bloche, M.G., “The Invention of Health Law,” California Law Review 9 (2003): 247–322.CrossRefGoogle Scholar
See, e.g., Wolf, S.M., “Shifting Paradigms in Bioethics and Health Law: The Rise of a New Pragmatism,” American Journal of Law & Medicine 20 (1994): 395–415; McGee, G., ed., Pragmatic Bioethics (Nashville, TN: Vanderbilt University Press, 1999).Google Scholar
Moreno, J.D., “Introduction,” in Moreno, J.D., ed., In the Wake of Terror: Medicine and Morality in a Time of Crisis (Cambridge, MA: MIT Press, 2003): xv–xxiv, xviii. See also Moreno, J.D., “Bioethics After the Terror,” American Journal of Bioethics 2 (2002): 60–64; Annas, G.J., “Terrorism and Human Rights,” in Moreno, , ed., In the Wake of Terror, supra, at 33–49- The events of 9/11 and concerns over bioterrorism have had an immediate and obvious impact on the law and bioethics of public health. See, e.g., Gostin, L.O., “When Terrorism Threatens Health: How Far Are Limitations on Personal and Economic Liberties Justified?” Florida Law Review 55 (2003): 1105–70; Childress, J.F. Bernheim, R.G., “Beyond the Liberal and Communitarian Impasse: A Framework and Vision for Public Health,” Florida Law Review 55 (2003); 1191–1219.Google Scholar
See, e.g., Jasanoff, S., “Ordering Knowledge, Ordering Society,” in Jasanoff, S., ed., States of Knowledge: The Co-production of Science and Social Order (New York: Routledge, 2004): 13–45; Reardon, J., “The Human Genome Diversity Project: A Case Study in Coproduction,”Social Studies of Science 31 (2001): 357 –88. Jasanoff suggested this vision of co-production in 1995, rejecting the “culture clash” cliché about the relationship of science and law in favor of a more nuanced vision based in case studies: “[T]he cultures of law and science are in fact mutually constitutive in ways that have previously escaped systematic analysis…. [T]hese institutions jointly produce our social and scientific knowledge….” Jasanoff, S., Science at the Bar: Law, Science, and Technology in America (Cambridge, MA: Harvard University Press, 1995): 8. I am grateful to Jay Aronson and his insightful work on DNA evidence in the courtroom for first bringing the co-production framework to my attention. Aronson, J.D., “Taming the Hypervariable Witness: The Introduction, Contestation, and Regulation of Forensic DNA Evidence in the American Legal System,” unpublished manuscript (2003).CrossRefGoogle Scholar
The incoming president of the American Society for Bioethics and Humanities is an M.D., J.D., and the Society’s Board of Directors has mixed lawyers with non-lawyers.Google Scholar
See Meisel, Cerminara, , supra note 9, at chapters 2, 7.Google Scholar
See, e.g., Johnson, S.H., symposium ed., “Symposium: Improving Treatment for Pain—Legal, Regulatory, and Research Perspectives,” Journal of Law, Medicine & Ethics 31 (2003): 7–118.Google Scholar
See Symposium, “Physician-Assisted Suicide: Facing Death After Glucksberg and Quill” Minnesota Law Review 82 (1998): 885–1101; OR. REV. STAT. §§127.800–127.890, 127.895, 127.897 (1994).Google Scholar
See, e.g., Brody, H., “Bringing Clarity to the Futility Debate: Don’t Use the Wrong Cases,” Cambridge Quarterly of Healthcare Ethics 7 (1998): 269–73; Schneiderman, L.J., Commentary, “Bringing Clarity to the Futility Debate: Are the Cases Wrong?” Cambridge Quarterly of Healthcare Ethics 7 (1998): 273–78; Brody, H., “Medical Futility: A Useful Concept,” in Zucker, M.B. Zucker, H.D., eds., Medical Futility and the Evaluation of Life-Sustaining Interventions (New York: Cambridge University Press, 1997): 1 –14; Schneiderman, L.J. Jecker, N.S., Wrong Medicine: Doctors, Patients, and Futile Treatment (Baltimore: Johns Hopkins University Press, 1995); Schneiderman, L.J. Jecker, N.S., “Is the Treatment Beneficial, Experimental, or Futile?” Cambridge Quarterly of Healthcare Ethics 5 (1996): 248–56.Google Scholar
See, e.g., Schneider, C.E., The Practice of Autonomy: Patients, Doctors and Medical Decisions (New York: Oxford University Press, 1998).Google Scholar
See Davis, J.K., “The Concept of Precedent Autonomy,” Bioethics 16 (2002): 114–33; Quante, M., “Precedent Autonomy and Personal Identity,” Kennedy Institute of Ethics Journal9 (1999): 365–81; Dresser, R.S. Robertson, J.A., “Quality of Life and Non-treatment Decisions for Incompetent Patients: A Critique of the Orthodox Approach,” Law, Medicine & Health Care 17 (1989): 234–44.CrossRefGoogle Scholar
See Brief for Dworkin, Ronald et al. as Amici Curiae in Support of Respondents, Washington v. Glucksberg, 521 U.S. 702 (1997) (No. 96–110) and Vacco v. Quill, 521 U.S. 793 (1997) (No. 95–1858) (the “Philosophers’ Brief).Google Scholar
Recent litigation prompted by human subjects research is altering the mix of legal tools in play. See, e.g., Grimes v. Kennedy Krieger Inst., 782 A.2d 807 (Md. 2001).Google Scholar
On the federal regulation in play, see supra note 8 regarding the Common Rule. Additional important regulation protecting human subjects includes that of the FDA. See 21 C.F.R. pts. 50–56 (2003). On the relevant state law, see, e.g., CAL. HEALTH & SAFETY CODE JS 24170–24179.5 (West 1978 & Supp. 2003); VA. CODE ANN. tit. 32.1 § 162.16–20 (Michie 1979 & Supp. 2003); WASH. REV. CODE ANN. §§ 42.48.010–900 (West 1985 & Supp. 2003).Google Scholar
For recent debate on the competence and quality of IRBs, see Institute of Medicine (IOM), Preserving Public Trust-Accreditation and Human Research Participant Protection Programs (Washington, DC: National Academy Press, 2001); Recommendations to General Clinical Research Centers (GCRCs) for Patient Safety in Clinical Research, Recommendations Presented to and Accepted by the National Advisory Research Resources Council (NARRC) on May 17, 2001, available at <http://www.ncrr.nih.gov/clinical/gcrcpatientsafety20010622.asp>(last visited April 26, 2004); Institute of Medicine (IOM), Institutional Review Boards and Health Services Research Data Privacy (Washington, DC: National Academy Press, 2000); Ellis, G.B., “Institutional Review Boards (IRBs): A System in Jeopardy,”Testimony Before the Senate Committee on Governmental Affairs (Mar. 12, 1996), available at <http://www.hhs.gov/asl/testify/t960312a.html> (last visited April 26, 2004).Google Scholar
The federal regulations on human subjects research have provoked a huge literature, whose outpouring continues. Recent examples include Kass, N. Dawson, L. Loyo-Berrios, N.I., “Ethical Oversight of Research in Developing Countries,” IRB: Ethics & Human Research 25, no. 2 (2003): 1–10; Churchill, L.R. et al. , “Assessing Benefits in Clinical Research: Why Diversity in Benefit Assessment Can Be Risky,”IRB: Ethics & Human Research 25, no. 3 (2003): 1–8; Wolf, S.M. Kahn, J.P. Wagner, J.E., “Using Preimplantation Genetic Diagnosis to Create a Stem Cell Donor: Issues, Guidelines & Limits,”Journal of Law, Medicine & Ethics 31 (2003): 327–39; Grady, C., “Money for Research Participation: Does It Jeopardize Informed Consent’”American Journal of Bioethics 1, no. 2 (2001): 40–44.CrossRefGoogle Scholar
See, e.g., National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, DC: U.S. Government Printing Office, 1979); President’s Commission for the Study of Ethical Issues in Medicine and Biomedical and Behavioral Research, Protecting Human Subjects: First Biennial Report on the Adequacy and Uniformity of Federal Rules and Policies, and Their Implementation for the Protection of Human Subjects in Biomedical and Behavioral Research (Washington, DC: U.S. Government Printing Office, 1981); President’s Commission for the Study of Ethical Issues in Medicine and Biomedical and Behavioral Research, Implementing Human Research Regulations: Second Biennial Report on the Adequacy and Uniformity of Federal Rules and Policies, and of Their Implementation, for the Protection of Human Subjects (Washington, DC: U.S. Government Printing Office, 1983); National Bioethics Advisory Commission, Ethical and Policy Issues in Research Involving Human Participants (2001), available at <www.georgetown.edu/research/nrcbl/nbac/pubs.html> (last visited April 26, 2004). A number of other federal advisory bodies have focused on specific issues in human subjects research. See, e.g., Advisory Commission on Human Radiation Experiments, The Human Radiation Experiments (New York: Oxford University Press, 1996). On the history and role of bioethics commissions generally, see U.S. Congress, Office of Technology Assessment, Biomedical Ethics in U.S. Public Policy—Background Paper, OTA-BP-BBS-105 (Washington, DC: U.S. Government Printing Office, 1993); Bulger, R.E. Bobby, E.M. Fineberg, H.V., eds., Institute of Medicine, Committee on the Social and Ethical Impacts of Developments in Biomedicine, Society’s Choices: Social and Ethical Decision Making in Biomedicine (Washington, DC: National Academy Press, 1995).Google Scholar
See, e.g., Wendler, D. et al. , “Nonbeneficial Research with Individuals Who Cannot Consent: Is It Ethically Better to Enroll Healthy or Affected Individuals?” IRB: Ethics & Human Research 25, no. 5 (2003): 1–4; National Bioethics Advisory Commission, Research Involving Persons with Mental Disorders that May Affect Decision-Making Capacity (Rockville, MD: 1998), available at <www.georgetown.edu/research/nrcbl/nbac/pubs.html> (last visited April 26, 2004).+(last+visited+April+26,+2004).>Google Scholar
See, e.g., Miller, F.G. Brody, H., “A Critique of Clinical Equipoise: Therapeutic Misconception in the Ethics of Clinical Trials,” Hastings Center Report 33, no. 3 (2003): 19–28; Miller, P. B. Weijer, C., “Rehabilitating Equipoise,”Kennedy Institute of Ethics Journal 13 (2003): 93–118.Google Scholar
See, e.g., Weijer, C. Emanuel, E.J., “Protecting Communities in Biomedical Research,” Science 289 (2000): 1142–44; Foster, M.W. et al. , “The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research,” American Journal of Human Genetics64 (1999): 1719–27; Juengst, E.T., “Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless,” Kennedy Institute of Ethics Journal 8 (1998): 183–200.CrossRefGoogle Scholar
See, e.g., Kass, et al. , supra note 31; Weijer, C. Anderson, J.A., “The Ethics Wars: Disputes Over International Research,” Hastings Center Report 31, no. 3 (2001): 18–20; National Bioethics Advisory Commission, Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries (Bethesda, MD: 2001), available at <www.georgetown.edu/research/nrcbl/nbac/pubs.html> (last visited April 26, 2004).Google Scholar
See, e.g., “Symposium: Research with Children: The New Legal and Policy landscape,” Journal of Health Care Law & Policy 6 (2002): 1–193; Wolf, Kahn, Wagner, , supra note 31.Google Scholar
42 U.S.C.A. §§ 263a-1 to 263a-7 (West 2003).Google Scholar
For bills introduced in the current Congress, see Human Cloning Ban and Stem Cell Research Protection Act of 2003, S. 303, 108th Cong. (2003): Human Cloning Prohibition Act of 2003, H.R. 534, 108th Cong. (2003); Human Cloning Prohibition Act of 2003, S. 245, 108th Cong. (2003); Human Cloning Prohibition Act of 2003, H.R. 234, 108th Cong. (2003); Human Cloning Prevention Act of 2003, H.R. 938, 108th Cong (2003); Cloning Prohibition Act of 2003, H.R. 801, 108th Cong. (2003); Human Cloning Research Prohibition Act of 2003, H.R. 916, 108th Cong. (2003); Right to Life Act, H.R. 3069, 108th Cong. (2003).Google Scholar
See President’s Council on Bioethics, Human Cloning, supra note 13, at chapters 7, 8 (comparing, at 212 n.2, the proposed Assisted Human Reproduction Agency of Canada); President’s Council on Bioethics, Reproduction and Responsibility: The Regulation of ’New Biotechnologies (Washington, DC: 2004): Chapter 9 (comparing both the Canadian proposal and the Human Fertilisation and Embryology Authority (HFEA) in England). The Canadian parliament has since passed the bill creating the agency. See Assisted Human Reproduction Act [Bill C-6], 3d Sess., 37th Parl. (Canada). On the HFEA, see <www.hfea.gov.uk> Oast visited May 18, 2004).+Oast+visited+May+18,+2004).>Google Scholar
See Uniform Parentage Act (2000), Uniform Laws Annotated, vol. 9B (West 2001 & Supp. 2003); Uniform Status of Children of Assisted Conception Act (1988), Uniform Laws Annotated, vol. 9C (West 2001 & Supp. 2003) (withdrawn 2000).Google Scholar
Robertson, J.A., Children of Choice: Freedom and the New Reproductive Technologies (Princeton, NJ: Princeton University Press, 1994).Google Scholar
Roe v. Wade, 410 U.S. 113 (1973).Google Scholar
For an early example, see In re Baby M, 537 A.2d 1227 (N.J. 1987).Google Scholar
See, e.g., New York State Task Force on Life and the Law, Assisted Reproductive Technologies: Analysis and Recommendations for Public Policy (New York: 1998).Google Scholar
Nelson, L.J. Milliken, N., “Compelled Medical Treatment of Pregnant Women: Life, Liberty, and Law in Conflict,” JAMA 259 (1988): 1060–66.CrossRefGoogle Scholar
On the history of limits on federal funding for research relating to assisted reproduction, see, e.g., Byers, K.A., “Infertility and In Vitro Fertilization: A Growing Need for Consumer-Oriented Regulation of the In Vitro Fertilization Industry,” Journal of Legal Medicine 18 (1997): 265–313; U.S. Congress, Office of Technology Assessment, Infertility: Medical and Social Choices (Washington, DC: U.S. Government Printing Office, 1988): Chapter 9.Google Scholar
See supra note 8.Google Scholar
See National Institutes of Health (NTH), Department of Health and Human Services, “Guidelines for Research Involving Recombinant DNA Molecules,” Appendix M, “Points to Consider in the Design and Submission of Protocols for the Transfer of Recombinant DNA Molecules into One or More Human Research Participants (Points to Consider),” available at <www4.od.nih.gov/oba/rac/guidelines_02/Appendix_M.htm> (last visited April 26, 2004); King, N.M.P., “RAC Oversight of Gene Transfer Research: A Model Worth Extending?” Journal of Law, Medicine & Ethics 30 (2002): 381 –86; Anderson, W.F., “Big Changes at the RAC!” Human Gene Therapy 5 (1998): 1309–10.+(last+visited+April+26,+2004);+King,+N.M.P.,+“RAC+Oversight+of+Gene+Transfer+Research:+A+Model+Worth+Extending?”+Journal+of+Law,+Medicine+&+Ethics+30+(2002):+381+–86;+Anderson,+W.F.,+“Big+Changes+at+the+RAC!”+Human+Gene+Therapy+5+(1998):+1309–10.>Google Scholar
For a report noting limited FDA review of genetic tests thus far, see Holtzman, N.A. Watson, M.S., eds., “Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing,” (1997), available at <www.genome.gov/10001733> (last visited April 26, 2004). The FDA has recently begun to assert greater jurisdiction in domains such as cloning and assisted reproduction. See, e.g., Merrill, R., “Human Tissues and Reproductive Cloning: New Technologies Challenge FDA,” Houston Journal of Health Law and Policy 3 (2002): 1–86; Merrill, R.A. Rose, B.J., “FDA Regulation of Human Cloning: Usurpation or Statesmanship?”Harvard Journal of Law & Technology15 (2001): 85–148; President’s Council on Bioethics, Reproduction and Responsibility, supra note 40, at 56–64. HIPAA restrictions on the use of genetic tests in group health insurance are found at Health Insurance Portability and Accountability Act (HIPAA), 29 U.S.C. §§ 1181–82 (2000).+(last+visited+April+26,+2004).+The+FDA+has+recently+begun+to+assert+greater+jurisdiction+in+domains+such+as+cloning+and+assisted+reproduction.+See,+e.g.,+Merrill,+R.,+“Human+Tissues+and+Reproductive+Cloning:+New+Technologies+Challenge+FDA,”+Houston+Journal+of+Health+Law+and+Policy+3+(2002):+1–86;+Merrill,+R.A.+Rose,+B.J.,+“FDA+Regulation+of+Human+Cloning:+Usurpation+or+Statesmanship?”Harvard+Journal+of+Law+&+Technology15+(2001):+85–148;+President’s+Council+on+Bioethics,+Reproduction+and+Responsibility,+supra+note+40,+at+56–64.+HIPAA+restrictions+on+the+use+of+genetic+tests+in+group+health+insurance+are+found+at+Health+Insurance+Portability+and+Accountability+Act+(HIPAA),+29+U.S.C.+§§+1181–82+(2000).>Google Scholar
See President’s Council on Bioethics, Human Cloning, supra note 13; Human Cloning Ban and Stem Cell Research Protection Act of 2003, S. 303, 108th Cong. (2003); Human Cloning Prohibition Act of 2003, H.R. 534, 108th Cong. (2003); Human Cloning Prohibition Act of 2003, S.245, 108th Cong. (2003); Human Cloning Prohibition Act of 2003, H.R. 234, 108th Cong. (2003); Human Cloning Prevention Act of 2003, H.R. 938, 108th Cong. (2003); Cloning Prohibition Act of 2003, H.R. 801, 108th Cong. (2003); Human Cloning Research Prohibition Act, H.R. 916, 108th Cong. (2003); Right to Life Act, H.R. 3069, 108th Cong. (2003).Google Scholar
On cloning, see, e.g., CAL. HEALTH & SAFETY CODE §§ 24185, 24187 (West Supp. 2004), and CAL. Bus. & PROF. CODE §§ 1604–05 (West 2004); MICH. COMP. LAWS ANN. §§ 333.16274–75, 333.20197, 333.26402–06, 750.430a (West 2001 & Supp. 2003); R.I. GEN. LAWS §§ 23–16.4–1 to 4–4 (2001 & Supp. 2003). On embryo stem cell research, see, e.g., 2003 N.J. Session Law Service chapter 203, Sen. No. 1909 (West). Most states have legislation relating to genetic testing, including limits on the use of genetic testing by insurers and employers. For helpful charts, see National Conference of State Legislatures, NCSL Genetics Tables, available at <www.ncsl.org/programs/health/genetics/charts.htm> (last visited April 26, 2004).+(last+visited+April+26,+2004).>Google Scholar
See, e.g., National Bioethics Advisory Commission, Cloning Human Beings, supra note 13; President’s Council on Bioethics, Human Cloning, supra note 13.Google Scholar
See, e.g., In re Torres, 357 N.W.2d 332 (Minn. 1984). This confusion between ethics and law is discussed in Wolf, S.M., “Ethics Committees in the Courts,” Hastings Center Report 16, no. 3 (1986): 12–15, 14. See also Spielman, B., “Has Faith in Health Care Ethics Consultants Gone Too Far? Risks of an Unregulated Practice and a Model Act to Contain Them,” Marquette Law Review 85 (2001): 161–221.CrossRefGoogle Scholar
See Wolf, , supra note 54; Delgado, R. McAllen, P., “The Moralist as Expert Witness,” Boston University Law Review 62 (1982): 869–926.Google Scholar
Kass, L.R., “The Wisdom of Repugnance: Why We Should Ban the Cloning of Human Beings,” Valparaiso University Law Review 32 (1998): 679–705; Kass, L.R., “The Wisdom of Repugnance,” New Republic, June 2, 1997: 17–26.Google Scholar
See, e.g., Kunich, J.C., “The Naked Clone,” Kentucky Law Journal 91 (2002–03): 1–65, 61; Greely, H., “Cloning and Government Regulation,” Hastings Law Journal 53 (2002): 1085–96; Sunstein, C.R., “Is There a Constitutional Right to Clone?” Hastings Law Journal 53 (2002): 987–1005.Google Scholar
See Morreim, E.H., Holding Health Care Accountable: Law and the New Medical Marketplace (New York: Oxford University Press, 2001). See also Jacobson, P.D., Strangers in the Night: Law and Medicine in the Managed Care Era (New York: Oxford University Press, 2002); Hall, M.A., Making Medical Spending Decisions: The Law, Ethics, and Economics of Rationing Mechanisms (New York: Oxford University Press, 1997).Google Scholar
See Gatter, R., “Walking the Walk of Trust in Human Subjects Research: The Challenge of Regulating Financial Conflicts of Interest,” Emory Law Journal 52 (2003): 327–401.Google Scholar
See Orentlicher, D., Matters of Life and Death: Making Moral Theory Work in Medical Ethics and Law (Princeton, NJ: Princeton University Press, 2001). Roger Dworkin also takes an interesting look at the relationship of law and bioethics in Dworkin, R.B., Limits: The Role of Law in Bioethical Decision Making (Bloomington, IN: Indiana University Press, 1996).Google Scholar
Rhoden, N.K., “Trimesters and Technology: Revamping Roe v. Wade,” Yale Law Journal 95 (1986): 639–97.CrossRefGoogle Scholar
Tribe, L.H., Channeling Technology Through Law (Chicago: Bracton Press, 1973).Google Scholar
Areen, J. et al. , Law, Science and Medicine (Westbury, NY: Foundation Press, 2d ed. 1996).Google Scholar
Rhoden, , supra note 61.Google Scholar
See Wolf, S.M., “Pragmatism in the Face of Death: The Role of Facts in the Assisted Suicide Debate,” Minnesota Law Review 82 (1998): 1063–1101; Johnson, S.H., “End-of-Life Decision Making: What We Don’t Know, We Make Up; What We Do Know, We Ignore,” Indiana Law Review 31 (1998): 13–47.Google Scholar
This often-cited phrase derives from the dissenting opinion of Justice Brandeis in New State Ice Co. v. Liebmann, 285 U.S. 262, 311 (1932) (Brandeis, J., dissenting) (“It is one of the happy incidents of the federal system that a single courageous state may, if its citizens choose, serve as a laboratory; and try novel social and economic experiments without risk to the rest of the country.”). For its recent application in cases relating to bioethics, see Cruzan, , 497 U.S. at 292; Washington v. Glucksberg, 521 U.S. at 737 (O’Connor, J., concurring).Google Scholar
See, e.g., Youngner, S.J. Arnold, R.M. Schapiro, R., The Definition of Death: Contemporary Controversies (Baltimore: Johns Hopkins University Press, 1999); Youngner, S.J. Arnold, R.M. for the Working Group on Ethical, Psychosocial, and Public Policy Implications of Procuring Organs from Non-Heart-Beating Donors, Cadaver, “Ethical, Psychosocial, and Public Policy Implications of Procuring Organs from Non-Heart-Beating Cadaver Donors,” JAMA269 (1993): 2769–74.Google Scholar
See Uniform Determination of Death Act (1980), Uniform Lam Annotated, vol. 12A (West 1996 & Supp. 2003). For examples of state statutes, see CAL. HEALTH & SAFETY CODE § 7180 (West Supp. 2004); KAN. STAT. ANN. §§ 77–204 to −206 (1997).Google Scholar
See, e.g., Schroedel, J.R. Fiber, P., “Punitive versus Public Health Oriented Responses to Drug Use by Pregnant Women,” Yale Journal of Health Policy, Law & Ethics 1 (2001): 217–28; Paltrow, L.M., “Pregnant Drug Users, Fetal Persons, and the Threat to Roe v. Wade,” Albany Law Review 62 (1999): 999 –1054; Chavkin, W. Breitbart, V. Wise, P.H., “Finding Common Ground: Necessity of an Integrated Agenda for Women’s and Children’s Health,”Journal of Law, Medicine & Ethics22 (1994): 262–69; Board of Trustees, American Medical Association, “Legal Interventions During Pregnancy: Court-Ordered Medical Treatments and Legal Penalties for Potentially Harmful Behavior by Pregnant Women,”JAMA 264 (1990): 2663–70. However, the Supreme Court has now found constitutional limits to drug testing of pregnant women. See Ferguson v. City of Charleston, 532 U.S. 67 (2001). On recent developments including the Rowland case, see, e.g., Johnson, K., “Harm to Fetuses Becomes Issue in Utah and Elsewhere,”New York Times, Mar. 27, 2004, at A9.Google Scholar
MINN. STAT. § 626.5561 (2002 & Supp. 2003).Google Scholar
See, e.g., Johnson v. State, 602 So.2d 1288 (Fla. 1992); People v. Hardy, 469 N.W.2d 50 (Mich. Ct. App. 1991).Google Scholar
See, e.g., Jos, P.H. Perlmutter, M. Marshall, M.F., “Substance Abuse During Pregnancy: Clinical and Public Health Approaches,” Journal of Law, Medicine & Ethics 31 (2003): 340–47; Paul-Emile, K., “The Charleston Policy: Substance or Abuse?” Michigan Journal of Race & Law 4 (1999): 325–87.CrossRefGoogle Scholar
See Roberts, D.E., “Punishing Drug Addicts Who Have Babies: Women of Color, Equality, and the Right of Privacy,” Harvard Law Review 104 (1991): 1419–82; Roberts, D., Killing the Black Body: Race, Reproduction, and the Meaning of Liberty(New York: Pantheon Books, 1997): 150–201.Google Scholar
See Hall, , supra note 15; Bloche, , supra note 16. Bloche decries analysis focusing on the single value of welfare maximization.Google Scholar
To tap into the sizeable literature critiquing use of grand narrative, see, e.g., Guinier, L. Torres, G., The Miner’s Canary: Enlisting Race, Resisting Power, Transforming Democracy (Cambridge, MA: Harvard University Press, 2002): 34–38; Ewick, P. Silbey, S.S., “Subversive Stories and Hegemonic Tales: Toward a Sociology of Narrative,” Law & Society Review 29 (1995): 197–226; Coombs, M.I., “Outsider Scholarship: The Law Review Stories,” University of Colorado Law Review 63 (1992): 683–716; Abrams, K., “Hearing the Call of Stories,” California Law Review 79 (1991): 971–1052.Google Scholar
The completed reports of the President’s Council are: President’s Council on Bioethics, Reproduction and Responsibility, supra note 40; President’s Council on Bioethics, Monitoring Stem Cell Research (Washington, DC: 2004); President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness (Washington, DC: 2003); President’s Council on Bioethics, Human Cloning, supra note 13. I do not include an anthology of readings also issued by the Council without normative recommendations. President’s Council on Bioethics, Being Human: Readings from the President’s Council on Bioethics (Washington, DC: 2003). On the work of the President’s Council, see <www.bioethics.gov> (last visited May 18, 2004).+(last+visited+May+18,+2004).>Google Scholar
President’s Council on Bioethics, Human Cloning supra , note 13, at 173.Google Scholar
Id.Google Scholar
National Bioethics Advisory Commission, Cloning Human Beings, supra note 13, at 109.Google Scholar
Id. at 96–98.Google Scholar
Id. at 202.Google Scholar
See Human Cloning Ban and Stem Cell Research Protection Act of 2003, S. 303, 108th Cong. (2003); Human Cloning Prohibition Act of 2003, H.R. 534, 108th Cong. (2003); Human Cloning Prohibition Act of 2003, S. 245, 108th Cong. (2003), Human Cloning Prohibition Act of 2003, H.R. 234, 108th Cong. (2003); Cloning Prohibition Act of 2003, H.R. 801, 108th Cong. (2003).Google Scholar
President’s Council on Bioethics, Reproduction and Responsibility, supra note 40. Council recommendations are in chapter 10.Google Scholar
Id. at xxviii (quoting a memo from Francis Fukuyama).Google Scholar
Id. at 188.Google Scholar
Id. at 220. The eight practices that the Council recommends for Congressional prohibition are: Transferring a human embryo into a non-human, mixing human and non-human gametes to produce an embryo, transferring a human embryo to a woman’s uterus for any purpose other than producing a baby, trying to conceive a child by means other than joining egg and sperm, using gametes from a human fetus or stems cells from a human embryo to try to conceive a child, fusing blastomeres from two or more embryos to attempt human conception, conducting research on human embryos beyond 10–14 days after fertilization, and buying or selling human embryos. Id. at 220–27.Google Scholar
Id. at 226.Google Scholar
See Annas, G.J., “The Nuremberg Code in U.S. Courts: Ethics versus Expediency,” in Annas, G.J. Grodin, M.A., eds., The Nazi Doctors and the Nuremberg Code (New York: Oxford University Press, 1992): 201–22.Google Scholar
Callahan, D., “Why America Accepted Bioethics,” Hastings Center Report 23, no. 6 (1993): S8–S9, S8 (arguing that America accepted bioethics because bioethics took a “middle course,” avoiding the “extremes of simple prohibition,” but showing through proposed regulation that it was “serious and willing to be cautious”).Google Scholar
Callahan, D., What Price Better Health? Hazards of the Research Imperative (Berkeley, CA: University of California Press, 2003): 191–92.CrossRefGoogle Scholar
Id. at 192.Google Scholar
Robertson, J.A., “Liberty, Identity, and Human Cloning,” Texas Law Review 76 (1998): 1371–1456, 1437–38 (footnote omitted). See also Robertson, J.A., “Wrongful Life, Federalism, and Procreative Liberty: A Critique of the NBAC Cloning Report,” Jurimetrics Journal 38 (Fall 1997): 69–82.Google Scholar
See Frase, R.S., “Criminalization and Decriminalization,” in Bernard, T.J. et al. , eds., Encyclopedia of Crime & Justice (New York: Macmillan, 2d ed. 2001): vol. 1 at 347–61, 358 (quoting, at 358, James Fitzjames Stephen).Google Scholar
Cf. Robertson, , “Wrongful Life,” supra note 89, at 80 (“There is an important question of federalism here. Even if criminal sanctions were warranted, it does not follow that the federal government should enact them. We generally leave matters of family, procreation, and protection of children to the states.”).Google Scholar
See, e.g., Zimring, F.E. Hawkins, G., “Legislating Federal Crime and Its Consequences,” Annals of the American Academy of Political and Social Science 543 (1996): 15–26; Ehrlich, S.A., “The Increasing Federalization of Crime,” Arizona State Law Journal 32 (2000): 825–42. See also American Bar Association, Task Force on the Federalization of Criminal Law, The Federalization of Criminal Law (Washington, DC: 1998).CrossRefGoogle Scholar
Fukuyama, F., Our Posthuman Future: Consequences of the Biotechnology Revolution (New York: Farrar, Straus and Giroux, 2002): 203–04.Google Scholar
Alta Charo has explored related terrain in trying to develop a bioethics of public policy. See Charo, R.A., “Dealing with Dolly: Cloning and the National Bioethics Advisory Commission” Jurimetrics Journal 38 (Fall 1997): 11–22; Charo, R.A., “The Hunting of the Snark: The Moral Status of Embryos, Right-to-Lifers, and Third World Women,” Stanford Law & Policy Review 6 (1995): 11–27.Google Scholar
See Administrative Procedure Act, 5 U.S.C. §§ 551 et seq. (2000); Federal Advisory Committee Act, 5 U.S.C. Appendix 2 (2000).Google Scholar
See Wolf, S.M., “Ethics Committees and Due Process: Nesting Rights in a Community of Caring,” Maryland Law Review 50 (1991): 798–858; Wolf, S.M., “Toward a Theory of Process,” Law, Medicine & Health Care 20 (1993): 278 – 90.Google Scholar
See Blackburn, E., “Bioethics and the Political Distortion of Biomedical Science,” New England Journal of Medicine 350 (2004): 1379–80; Caplan, A.L. et al. , “Petition Sponsored by Arthur Caplan, PhD.,” Mar. 3, 2004 (e-mail, on file with the author).CrossRefGoogle Scholar
Cf. Union of Concerned Scientists, “Restoring Scientific Integrity in Policy-making,” available at <www.ucsusa.org/global_environment/rsi/signon.html> (last visited April 26, 2004) (letter from 60 prominent scientists accusing the current Bush administration of misusing science); Glanz, J., “Scientists Say Administration Distorts Facts,” New York Times, Feb. 19, 2004, at A18. On problems of fair representation, see also Callahan, , supra note 90, at chapter 7; Spielman, B., “Should Consensus Be ‘The Commission Method’ in the US? The Perspective of the Federal Advisory Committee Act, Regulations, and Case Law,” Bioethics 17 (2003): 341–56.+(last+visited+April+26,+2004)+(letter+from+60+prominent+scientists+accusing+the+current+Bush+administration+of+misusing+science);+Glanz,+J.,+“Scientists+Say+Administration+Distorts+Facts,”+New+York+Times,+Feb.+19,+2004,+at+A18.+On+problems+of+fair+representation,+see+also+Callahan,+,+supra+note+90,+at+chapter+7;+Spielman,+B.,+“Should+Consensus+Be+‘The+Commission+Method’+in+the+US?+The+Perspective+of+the+Federal+Advisory+Committee+Act,+Regulations,+and+Case+Law,”+Bioethics+17+(2003):+341–56.>Google Scholar
Bethany Spielman offers a model of such scholarship in her work on what law has to teach bioethics on the desirability of consensus within federal commissions. See Spielman, , supra note 101.Google Scholar
See, e.g., Symposium, “The Legal Construction of Norms,” Virginia Law Review 86 (2000): 1577–2021; Symposium, “Social Norms, Social Meaning, and the Economic Analysis of Law,” Journal of Legal Studies 27 (1998): 537–823; Symposium, “Normative Failure Theory of Law,” Cornell Law Review 82 (1997): 947–79; McAdams, R.H., “The Origin, Development, and Regulation of Norms,”Michigan Law Review 96 (1997): 338–433; Sunstein, C., “Social Norms and Social Roles,”Columbia Law Review 96 (1996): 903–68; Lessig, L., “The Regulation of Social Meaning,” University of Chicago Law Review 62 (1995): 943–1045.Google Scholar
Scholars beginning to explore the implications of work on law and norms for problems in bioethics include Gail Agrawal and Arti Rai. See Agrawal, G.B., “Resuscitating Professionalism: Self-Regulation in the Medical Marketplace,” Missouri Law Review 66 (2001): 341–411; Rai, A.K., “Regulating Scientific Research: Intellectual Property Rights and the Norms of Science,” Northwestern University Law Review 94 (1999): 77–152.Google Scholar
On litigation against bioethicists and their potential liability, individually and as committee members, see, e.g., Sontag, D.N., “Are Clinical Ethics Consultants in Danger? An Analysis of the Potential Legal Liability of Individual Clinical Ethicists,” University of Pennsylvania Law Review 151 (2002): 667–705 (discussing the Gelsinger, Robertson, and older Bouvia cases); Merritt, A.L., “The Tort Liability of Hospital Ethics Committees”, Southern California Law Review 60 (1987): 1239–97.CrossRefGoogle Scholar
See, e.g., Bosk, C., “The Licensing and Certification of Ethics Consultants: What Part of ‘No!’ Was So Hard to Understand?” in Aulisio, M.P. Arnold, R.M. Youngner, S.J., eds., Ethics Consultation: From Theory to Practice (Baltimore: Johns Hopkins University Press, 2003): 147–63; Churchill, L.R., “Are We Professionals? A Critical Look at the Social Role of Bioethicists,” Daedalus128, no. 4 (1999): 253–74; Shalit, R., “When We Were Philosopher Kings,” New Republic 216, no. 17 (1997): 24– 28; Baylis, F.E., ed., The Health Care Ethics Consultant (Totowa, NJ: Humana Press, 1994); Scofield, G.R., “Here Come the Ethicists!” Trends in Health Care, Law & Ethics, 8 no. 4 (1993): 19–22; Scofield, G.R., “Ethics Consultation: The Least Dangerous Profession?” Cambridge Quarterly of Healthcare Ethics 2 (1993): 417–25. There is a closely related debate over whether bioethicists can claim a genuine expertise. See, e.g., Pellegrino, E.D., “Clinical Ethics Consultations: Some Reflection on the Report of the SHHV-SBC,” Journal of Clinical Ethics 10, no. 1 (1999): 5–12; Casarett, D.J. Daskal, F. Lantos, J., “Experts in Ethics? The Authority of the Clinical Ethicist,”Hastings Center Report28, no. 6(1998): 6–11; Caplan, A.L., “Moral Experts and Moral Expertise: Do Either Exist?” in Hoffmaster, B. Freedman, B. Fraser, G., eds., Clinical Ethics: Theory and Practice (Clifton, NJ: Humana Press, 1989): 59–87. Related to that has been a further debate on the role of the bioethicist as expert witness in court. See, e.g., Spielman, B. Agich, G., “The Future of Bioethics Testimony: Guidelines for Determining Qualifications, Reliability, and Helpfulness,” San Diego Law Review 36 (1999): 1043–7; Delgado and McAllen, supra note 55.Google Scholar
American Society for Bioethics and Humanities, Core Competencies for Health Care Ethics Consultation: The Report of the American Society for Bioethics and Humanities (Glenview, IL: 1998) [hereinafter “Core Competencies”]. For recent debate on what standards should guide private bioethics consultation, see Brody, B. et al. , “Bioethics Consultation in the Private Sector”, Hastings Center Report 32, no. 3 (2002): 14–20; Youngner, S.J. Arnold, R., “Who Will Watch the Watchers?” Hastings Center Reports, no. 3 (2002): 21–22; Brody, B. et al. , “The Task Force Responds,” Hastings Center Report 32, no. 3 (2002): 22–23.Google Scholar
Core Competencies, supra note 107, at 31.Google Scholar
See Cover, R., “Violence and the Word,” in Minow, M. Ryan, M. Sarat, A., Narrative, Violence, and the Law: The Essays of Robert Cover (Ann Arbor, MI: University of Michigan Press, 1992): 203–38. Cover writes: “Legal interpretation takes place in a field of pain and death…. Legal interpretive acts signal and occasion the imposition of violence upon others: A judge articulates her understanding of a text, and as a result, somebody loses his freedom, his property, his children, even his life…. Neither legal interpretation nor the violence it occasions may properly be understood apart from one another.” Id. at 203.Google Scholar