Justice and the Human Genome Project "endnotes"

Notes

1— The Genome Project and the Meaning of Difference

1. Francis Bacon, The New Organon (New York: Liberal Arts Press, 1960).

2. Francis Bacon, The Advancement of Learning and New Atlantis (London: Oxford, 1974).

3. Ibid., 228.

2. Francis Bacon, The Advancement of Learning and New Atlantis (London: Oxford, 1974).

3. Ibid., 228.

4. Alexander M. Capron, "Which Ills to Bear? Reevaluating the 'Threat' of Modern Genetics," Emory Law Journal 39 (1990): 679.

5. See Loane Skene, "Mapping the Human Genome: Some Thoughts for Those Who Say There Ought To Be a Law on It," Bioethics 5 (1991): 233-249.

6. James D. Watson and Robert Mullan Cook-Deegan, "The Human Genome Project and International Health," Journal of the American Medical Association 263 (1990): 3322-3324.

7. Paul Feyerabend, Against Method, Outline of an Anarchist Theory of Knowledge (London: Verso, 1975).

8. Ibid.

7. Paul Feyerabend, Against Method, Outline of an Anarchist Theory of Knowledge (London: Verso, 1975).

8. Ibid.

9. Leon R. Kass, Toward a More Natural Science (New York: Free Press, 1985), 176.

10. Friedrich Nietzsche, Daybreak, Thoughts on the Prejudices of Morality, R. J. Hollingdale, trans. (Cambridge: Cambridge University Press, 1982), 134.

11. See Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Knopf, 1985).

12. Margaret Sanger, The Pivot of Civilization (Elmsford, NY: Maxwell Reprint, 1969 [originally published, 1922]).

13. Blaise Pascal, "Prière de Blaise Pascal pour demander à Dieu le bon Usage des Maladies," Oeuvres , Vol. IX (Paris: Librairie Hachette, 1914), 319-340.

14. Blaise Pascal, Pensées, A. J. Krailsheimer, trans. (London: Penguin, 1966), 36. break

2— Eugenics and the Human Genome Project: Is the Past Prologue?

1. La Vie en Kit: Éthique et Biologie (Paris: L'Arche de la Défense, 1991), 25. "Aujourd'hui, stupéfiant paradoxe, la génération qui suit le nazisme continue

donne au monde les outils de l'eugénisme au-delà des rêves hitlériens les plus fous. Comme si l'impensé de la génération des pères hantait les découvertes des fils. Les scientifiques de demain auront un pouvoir qui excède tous les pouvoirs connus dans l'humanité: celui de manipuler le génome. Qui peut jurer qu'il ne servira qu'à l'évitement des maladies héréditaires?"

2. Francis Galton, Inquiries into the Human Faculty (London: Macmillan, 1883), 24-25; Karl Pearson, The Life, Letters, and Labours of Francis Galton (3 vols. in 4; Cambridge, U.K.: Cambridge University Press, 1914-1930), IIIA, 348.

3. Historical accounts of eugenics, which itself produced a vast literature, have multiplied in recent years. For treatments of the subject in the United States and Britain, see Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Alfred A. Knopf, 1985) and G. R. Searle, Eugenics and Politics in Britain, 1900-1914 (Leyden: Noordhoff International Publishing, 1976). For Germany, see Benno Müller-Hill, Murderous Science: Elimination by Scientific Selection of Jews, Gypsies, and Others, Germany, 1933-1945 (New York: Oxford University Press, 1988); Robert N. Proctor, Racial Hygiene: Medicine Under the Nazis (Cambridge, MA: Harvard University Press, 1988); Sheila Faith Weiss, Race Hygiene and National Efficiency: The Eugenics of Wilhelm Schallmayer (Berkeley: University of California Press, 1987); and Paul Weindling, Health, Race and German Politics between National Unification and Nazism, 1870-1945 (Cambridge, U.K.: Cambridge University Press, 1990).

4. Kevles, In the Name of Eugenics , 62; Kenneth M. Ludmerer, Genetics and American Society: A Historical Appraisal (Baltimore, MD: Johns Hopkins University Press, 1972), 60.

5. Charles B. Davenport, Heredity in Relation to Eugenics (New York: Henry Holt, 1911), 216, 218-219, 221-222.

6. Kevles, In the Name of Eugenics , 61-62.

7. Ibid., 107-112, 114-116; Buck v. Bell , 274 U.S. 201-207 (1927).

6. Kevles, In the Name of Eugenics , 61-62.

7. Ibid., 107-112, 114-116; Buck v. Bell , 274 U.S. 201-207 (1927).

8. Proctor, Racial Hygiene , 44, 292, 307.

9. Stephen Jay Gould, The Flamingo's Smile: Reflections in Natural History (New York: W. W. Norton, 1985), 292-295, 301-303.

10. New York Times , 15 August 1991, p. 1.

11. The Commission is the Brussels-based executive arm of the European Community (the term has come to replace the phrase European Communities , meaning the European Economic Community, the European Coal and Steel Community, and the European Atomic Energy Community). It described its proposal as "a European response to the international challenges presented by the large-scale biological research projects in the United States . . . and Japan (Human Frontier Science Programme)," adding, "Although it is a programme of basic precompetitive research, both new information and continue

new materials of potential commercial value will result; new technological processes will also be developed. These will all contribute to the development of Europe's biotechnology industry--often based in small and medium-sized enterprises." Commission of the European Communities, Proposal for a Council Decision Adopting a Specific Research Programme in the Field of Health; Predictive Medicine: Human Genome Analysis (1989-1991) , COM (88) 424 final-SYN 146, Brussels, 20 July 1988, 1.

12. Ibid., 3.

13. Ibid., 10, 12, 20, 30.

12. Ibid., 3.

13. Ibid., 10, 12, 20, 30.

12. Ibid., 3.

13. Ibid., 10, 12, 20, 30.

14. Kevles, In the Name of Eugenics , 62-63; Philip R. Reilly, The Surgical Solution: A History of Involuntary Sterilization in the United States (Baltimore: The Johns Hopkins University Press, 1991), 91-93. The last state eugenic sterilization law was passed in 1937, in Georgia, partly in response to conditions of overcrowding in the state's institutions for the mentally handicapped. Edward J. Larson, "Breeding Better Georgians," Georgia Journal of Southern Legal History 1 (1991): 53-79.

15. The Roman Catholic Church took an official stand against eugenics in 1930, in the Papal Encyclical Casti Connubii (Kevles, In the Name of Eugenics , 119). The Church's well-known opposition to abortion sets it against the kind of eugenics that spokespeople for the handicapped currently fear since such a eugenics can be accomplished at the moment only by the abortion of fetuses determined to be "defective" by amniocentesis, ultrasound, or some combination of the two.

16. European Parliament, Committee on Energy, Research, and Technology, Report Drawn up on Behalf of the Committee on Energy, Research and Technology on the Proposal from the Commission to the Council (COM/88/424-C2-119/88) for a Decision Adopting a Specific Research Programme in the Field of Health; Predictive Medicine: Human Genome Analysis (1989-1991) . Rapporteur Benedikt Härlin, European Parliament Session Documents, 1988-89, 30.01.1989, Series A, Doc. A2-0370/88 SYN 146, p.3. Auxiliary opinions were also requested of the Committee on Budgets and the Committee on the Environment, Public Health, and Consumer Protection.

17. Financial Times [London], 10 May 1989, p. 18; Joel Davis, Mapping the Code: The Human Genome Project and the Choices of Modern Science (New York: John Wiley & Sons, 1990), 175; Michael Specter, "Petunias Survive German Debate over Biotechnology," International Herald Tribune , 12 April 1990. The German fear of genetics and eugenics would intensify, leading some activist groups on a number of occasions to intimidate and even suppress debate on biomedical subjects in universities using methods reminiscent of the Nazis (Peter Singer, "On Being Silenced in Germany," The New York Review of Books , 15 August 1991, pp. 36-42).

18. European Parliament, Report on Proposal , 23-28. break

19. Specter, "German Debate over Biotechnology."

20. European Parliament, Report on Proposal , 3, 5-7, 10-11, 14. Härlin's committee was strongly supported in its position by the Committee on the Environment, Public Health, and Consumer Protection, which recommended modification of the genome project proposal to the end that the medical, ethical, legal, and social implications of such research be investigated before any specific technical projects were promoted or continued. To the Committee's members, it was "quite clear that ethical problems will arise, particularly concerning eugenic problems and access to information by individuals, States, employers, insurance companies (etc.), if the programme is successful in its long term ambitions." (Committee on the Environment, Public Health, and Consumer Protection, Opinion for the Committee on Energy, Research, and Technology on the Proposal from the Commission of the European Communities for a Council Decision Adopting a Specific Research Programme in the Field of Health; Predictive Medicine: Human Genome Analysis (1989-1991) , (COM/88/424 final-SYN 146-Doc. C2-119/88), 3, 5-8).

21. Financial Times [London], 5 April 1989, BioDoc: A collection of documents on biotechnology, European Economic Community, DG-XII, Brussels; Dirk Stemerding, "Political Decision-Making on Human Genome Research in Europe," paper delivered at Harvard workshop on the Human Genome Project, 15 June 1990, 2.

22. Commission of the European Communities, Modified Proposal for a Council Decision, Adopting a Specific Research and Technological Development Programme in the Field of Health: Human Genome Analysis, (1990-1991) , 13 November 1989, pp. 2-4, 11-17; Scrip , 8 December 1989, p. 5; copy in BioDoc.

23. European Community, Common Position Adopted by the Council on 15 December 1989, . . . Programme in the Field of Health: Human Genome Analysis (1990-1991) , Brussels, 15 Dec. 1989, 10619/89; Official Journal of the European Communities , No. L 196/8, 26/7/90, Council Decision of 29 June 1990, adopting a specific research and technological development programme in the field of health, human genome analysis (1990-1991), (90/395/EEC).

24. Jane E. Brody, "Personal Health," New York Times , 8 November 1990, p. B7; Barry Werth, "How Short Is Too Short?" New York Times Magazine , 16 June 1991, 15, 17, 28-29; European Parliament, Report on Proposal , 25-26; John Hodgson, "Editorial: Geneticism and Freedom of Choice," Trends in Biotechnology , September 1989, 221.

25. Jerry E. Bishop and Michael Waldholz, Genome: The Story of the Most Astonishing Adventure of Our Time--The Attempt To Map All the Genes in the Human Body (New York: Simon and Schuster, 1990), 274. break

3— Handle With Care: Race, Class, and Genetics

1. P. Kahn, "Germany's Gene Law Begins to Bite," Science 255 (1992): 524-546.

2. See R. J. Lifton, The Nazi Doctors (New York: Basic Books, 1986); B. Müller-Hill, Murderous Science (New York: Oxford University Press, 1988); R. Proctor, Racial Hygiene: Medicine under the Nazis (Cambridge, Mass.: Harvard University Press, 1988); M. H. Kater, Doctors under Hitler (Chapel Hill, NC.: University of North Carolina Press, 1989); A. L. Caplan, "The End of a Myth," Dimensions: A Journal of Holocaust Studies 5 (1990): 13-18, and A. L. continue

Caplan, ed., When Medicine Went Mad: Bioethics and the Holocaust (Totowa, N.J.: Humana Press, 1992).

3. See M. Biagioli, "Science, Modernity, and the Final Solution," in S. Friedlander, ed., Probing the Limits of Representation (Cambridge, Mass.: Harvard University Press, 1992) and Caplan, When Medicine Went Mad .

4. See P. Weindling, "Weimar Eugenics: The Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics in Social Context," Annals of Science 42 (1985): 303-318; Proctor, Racial Hygiene; W. E. Seidelman, "Mengele's Medicus: Medicine's Nazi Heritage," Milbank Quarterly 66 (1988): 221-239; C. Pross, "Breaking through the Postwar Coverup of Nazi Doctors in Germany," Journal of Medical Ethics 17 (1991): 13-16; Caplan, When Medicine Went Mad; R. M. Lerner, Final Solutions: Biology, Prejudice and Genocide (University Park, Penn.: Pennsylvania State University Press, 1992).

5. Caplan, When Medicine Went Mad .

6. Lifton, Nazi Doctors; Proctor, Racial Hygiene; Seidelman, "Mengele Medicus"; Kater, Doctors under Hitler; Pross, "Breaking through"; Biagioli, "Science"; Caplan, When Medicine Went Mad; Lerner, Final Solutions; M. Burleigh and W. Wipperman, The Racial State: Germany 1933-1945 (New York: Cambridge University Press, 1992).

7. Caplan, When Medicine Went Mad .

8. Proctor, Racial Hygiene; P. Reilly, The Surgical Solution (Baltimore: Johns Hopkins University Press, 1991).

9. D. Bergsma, ed., Ethical, Social and Legal Dimensions of Screening for Human Genetic Disease (New York: Stratton, 1974).

10. Marc Lappé, Broken Code (San Francisco: Sierra Club Books, 1984); T. Duster, Backdoor to Eugenics (New York: Routledge, 1990).

11. D. Kumar, "Should One be Free to Choose the Sex of One's Child?" Journal of Applied Philosophy 2 (1985): 197-204.

12. P. Applebome, "The Ex-Nazi Who Would be Governor," New York Times , 10 November 1991, pp. 1, 17.

13. "Being and Believing: Ethics of Virtual Reality," Lancet 338 (1991): 283-284.

14. A. A. Tyroler, S.A. James, "Blood Pressure and Skin Color," American Journal of Public Health 68 (1978): 1170-1172; E. Harburg, L. Gleibermann, P. Roeper, M. A. Shork, and W. J. Schull, "Skin Color, Ethnicity and Blood Pressure: Detroit Blacks," American Journal of Public Health 68 (1978): 1177-1183.

15. R. P. Kusserow, The Distribution of Organs for Transplantation: Expectations and Practices (Washington, D.C.: Government Printing Office, 1990 [OEI-1-89-00550]).

16. E. P. Vichinsky, et al., "Alloimmunization in Sickle Cell Anemia and Transfusion of Racially Unmatched Blood," New England Journal of Medicine 322 (1990): 1617-1621. break

4— Public Choices and Private Choices: Legal Regulation of Genetic Testing

1. For a review of the cases, see Lori B. Andrews, "Torts and the Double Helix: Malpractice Liability for Failure to Warn of Genetic Risks," U. Houston L. Rev. 29 (1992): 149-184, 135-158.

2. Ibid. There is evidence that, when faced with the information that their fetus will have a serious disorder, most potential parents choose to abort. In a large-scale study of 3,000 amniocenteses, in which 113 fetuses were found to have chromosomal or biochemical abnormalities, 93.8 percent chose abortion. M. S. Golbus, W. D. Loughman, C. J. Epstein, G. Halbasch, J. D. Stephens, and B. D. Hall, "Prenatal Genetic Diagnosis in 3,000 Amniocenteses," New England Journal of Medicine 300 (1979): 157-163, 160. In a subsequent study of 7,000 pregnancies in which 149 cytogenic abnormalities were detected, nearly all women with severely abnormal fetuses elected to terminate their pregnancies, while only sixty-two percent with a prenatally diagnosed sex chromosome abnormality did so. Peter A. Benn, Lillian Y. F. Hsu, Ann Carlson, and Hody L. Tannenbaum, "The Centralized Prenatal Genetics Screening Program of New York City III: The First 7,000 Cases," American Journal of Medical Genetics 20 (1985): 369-384, 369-370.

1. For a review of the cases, see Lori B. Andrews, "Torts and the Double Helix: Malpractice Liability for Failure to Warn of Genetic Risks," U. Houston L. Rev. 29 (1992): 149-184, 135-158.

3. For information about the scope of the fetal experimentation statutes, see Lori B. Andrews, "Regulation of Experimentation on the Unborn," Journal of Legal Medicine 14 (1993): 25-56.

4. Fla. Stat. Ann. §390.001(6) (West 1986); Me. Rev. Stat. Ann. tit. 22, §1593 (1992); Minn. Stat. Ann. §145.422(1), (2) (West 1989); Mo. Ann. Stat. §188.037 (Vernon 1983); N.M. Stat. Ann. §24-9A-4,-5 (1991); Okla. Stat. Ann. tit. 63, §1-735 (West 1984); 18 Pa. Cons. Stat. Ann. §3216(a) (Purdon Supp. 1992). Certain of these laws would not apply to genetic screening of embryos because they deal with older fetuses. The New Mexico statute applies only to fetuses with a heartbeat or other specified vital signs. N.M. Stat. Ann. §24-9A-1(H) (1991). Because a heartbeat is discernible as early as four weeks, however, such a statute could apply to experimental variations on chorionic villi sampling. This statute applies only to formal clinical research programs.

5. La. Rev. Stat. Ann. §9:121 et seq. (West 1991); Me. Rev. Stat. Ann. tit. 22 §1593 (1980). But see Lifchez v. Hartigan, 735 F. Supp. 1361 (N.D. Ill.), aff'd., 915 F.2d 260 (7th Cir. 1990), cert. denied sub. nom., Scholberg v. Lifchez, 498 U.S. 1069, 111 S.Ct. 787 (1991), which held that such a statute is unconsti- soft

tutional when applied to genetic screening. Some states specifically exempt genetic screening from their bans on embryo and fetal research. In three other states that ban embryo experimentation, there is an exception for diagnostic procedures. Mass. Ann. Laws ch. 112 §12J (Law. Co-op. 1985); N.D. Cent. Code §14-02.2-01(2) (1991); R.I. Gen. Laws §11-54-1(b) (Supp. 1991).

6. At the eight-cell stage, all cells are totipotent and thus the embryo would develop normally, with no damage attributable to the removal of the one cell. For a description of the benefits of genetic screening of the embryo, see, Cliff Grobstein, From Chance to Purpose: An Appraisal of External Human Fertilization (Reading, Mass.: Addison-Wesley, 1981), 123.

7. See, e.g., La. Rev. Stat. §9:121 et seq. (West 1991).

8. La. Rev. Stat. §9:122 (West 1991).

9. La. Rev. Stat. §9:129 (West 1991).

10. Freezing the embryo indefinitely might lead to the embryo becoming nonviable, but such an effect would not seem to be the sort of intentional destruction that the statute forbids.

11. Lifchez v. Hartigan, 735 F. Supp. 1361, 1376 (N.D. Ill.) aff'd., 915 F.2d 260 (7th Cir. 1990), cert. denied sub. nom., Scholberg v. Lifchez, 498 U.S. 1069, 111 S.Ct. 787 (1991).

12. The law was also declared to be unconstitutionally vague. Ibid., 1376.

13. Under the common law, an embryo traditionally was not considered to have the rights of a person. In Roe v. Wade, the U.S. Supreme Court scanned the Constitution, looking for provisions with the word "person," and found that none of the contexts "has any possible prenatal application." 410 U.S. 113, 157-158 (1973).

14. As Joel Feinberg notes, the weakness of the symbolic argument is "the difficulty of showing that the alleged coarsening effects really do transfer from primary to secondary objects." Joel Feinberg, "The Mistreatment of Dead Bodies," Hastings Center Report 15 (1985): 31-37; 37. He observes that "[w]e can deliberately inhibit sentiment toward one class of objects when we believe it might otherwise motivate inappropriate conduct, yet give it free rein toward another class of objects where there is no such danger." Id. (footnote omitted).

15. Sissela Bok, in arguing for an examination of the reasons for protecting life, argues that we cannot simply equate killing an embryo with murder. "[T]he reasons for protecting life fail to apply here. This group of cells cannot feel the anguish or pain connected with death. Its experiencing of life has not yet begun; it is not yet conscious of the interruption of life nor of the loss of anything it has come to value in life. Nor is it tied by bonds of affection to others." Sissela Bok, "Fetal Research and the Value of Life," in National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Appendix: Research on the Fetus (1975), 2-1, 2-7. See continue

also Sissela Bok, "Ethical Problems of Abortion," Hastings Center Studies 2 (1974): 32-36; 33.

16. In addition, granting various protections to embryos in a way that does not infringe procreative rights (for example, by allowing suits on the embryo's behalf against third party tortfeasors) would be arguably constitutional. Without a fundamental right at issue, the legislation would be considered constitutional if it was rationally related to a permissible governmental purpose, and the protection of the embryo as a symbol would likely meet that standard.

17. At least four states have statutes that prohibit parents from bringing wrongful birth suits against health care practitioners and institutions. Minn. Stat. Ann. §145.424(2) (West 1989); Mo. Ann. Stat. §188.130-131 (Vernon Supp. 1992); 42 Pa. Cons. Stat. Ann. §8305 (Purdon Supp. 1992) (this statute does not prohibit cases based on intentional misrepresentation); S.D. Codified Laws Ann. §21-55-2 (1987). At least eight states prohibit children from bringing wrongful life suits. Idaho Code §5-334 (1990); Ind. Code Ann. §34-11-11 (West Supp. 1992); Minn. Stat. Ann. §145.424(1) (West 1989); Mo. Ann. Stat. §188.130-1 (Vernon Supp. 1992); N.D. Cent. Code §32-03-43 (Supp. 1991); 42 Pa. Cons. Stat. Ann. §8305 (Purdon Supp. 1992); S.D. Codified Laws §21-55-1 (1987); and Utah Code Ann. §78-11-24 (1992).

18. The wrongful birth cases specifically recognize that they are creating an incentive for physicians to provide genetic testing and information. See, e.g., Berman v. Allen, 80 N.J. 421, 432, 404 A.2d 8, 14 (1979). Siemieniec v. Lutheran General Hospital, 134 Ill. App. 3d 823, 480 N.E. 2d 1227, 1232 (1985).

19. Avery v. County of Burke, 600 F.2d 111 (4th Cir. 1981). In that case, a young pregnant woman was erroneously diagnosed by a county health department prenatal clinic as having the sickle cell trait and told that she should undergo sterilization. The health care professionals at the clinic apparently overstated the complications of having the sickle cell trait, telling her that it made her more susceptible to numerous diseases while pregnant, that it made childbirth incredibly dangerous, and that it rendered her unable to take birth control pills. Ibid., 113. She underwent the sterilization, then discovered she did not have the trait. The court held that she had a valid cause of action against the clinic for violation of her constitutional rights for wrongfully causing her sterilization.

20. 492 U.S. 490 (1989).

21. 505 U.S.------, 112 S.Ct. 2791, 120 L. Ed. 2d 674 (1992).

22. The Supreme Court in Webster noted that the facts in that case differed from those in Roe, giving the Court "no occasion to revisit the holding of Roe. " Webster v. Reproductive Health Services, 492 U.S. 490 (1989). In Casey, the Supreme Court expressly affirmed Roe, but rejected the trimester framework, thus reinterpreting the scope of Roe. Planned Parenthood v. Casey, 505 U.S.------, 112 S.Ct. 2791 (1992). break

23. National Journal 21 (1989): 1264.

24. "No-Fault Divorce Act and 'Nonarrest' Custody Bill Are Opposed by the House of Delegates in New Orleans," American Bar Association Journal 58 (1972): 379-389, p. 380 (allowing abortion if the physician has reasonable cause to believe "that the child would be born with grave physical or mental defect").

25. American Medical Association, Proceedings of the AMA House of Delegates (1967): 40-51 (allowing abortions if there is "documented medical evidence" that the child "may be born with incapacitating physical deformity or mental deficiency").

26. See Roe v. Wade , 410 U.S. 113, 141-146 (1973), for a discussion of existing and proposed laws prior to the decision.

27. Tay-Sachs disease is a recessive gene disorder most common in families of Eastern European Jewish origin. Children who have the disease exhibit early progressive and profound retardation, blindness, and paralysis with characteristic cherry red spots on the retina. Death usually occurs by age three or four. Lawyers' Medical Cyclopedia § 4.10, 3d ed. (1981).

28. Lori B. Andrews, Medical Genetics: A Legal Frontier (Chicago: American Bar Foundation, 1987), 238.

29. Statutes in Arkansas, Hawaii, Illinois, Maryland, Massachusetts, and Rhode Island require insurance companies to pay for in vitro fertilization, but these deal with uses for treating infertility rather than for genetic screening purposes.

30. Golbus et al., "Prenatal Genetic Diagnosis," 158. In New York State, this disparity has been addressed through a policy of state funding of amniocentesis for poor women.

31. This is not to say that poorer families did not participate in these efforts but rather that the effort was, in some senses, easier for wealthier families.

32. Philip Reilly, "Eugenic Sterilization in the United States," in A. Milunsky and G. Annas, eds., Genetics and the Law III (New York: Plenum, 1985), 230.

33. Ruth Macklin and Willard Gaylin, Mental Retardation and Sterilization: A Problem of Competency and Paternalism (New York: Plenum, 1981), 65.

34. Reilly, "Eugenic Sterilization," 235. An official of the American Eugenics Society told the media that the German sterilization plan "showed great courage and statesmanship." Daniel Kevels, In the Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Knopf, 1985), 118.

35. Reilly, "Eugenic Sterilization," 230.

36. Griswold v. Connecticut , 381 U.S. 479 (1965); Roe v. Wade , 410, U.S. 113 (1973).

37. Philip Reilly, Genetics, Law, and Social Policy (Cambridge, Mass.: Harvard University Press, 1977), 62-86. break

38. Ibid., 67.

37. Philip Reilly, Genetics, Law, and Social Policy (Cambridge, Mass.: Harvard University Press, 1977), 62-86. break

38. Ibid., 67.

39. Ohio Rev. Code Ann. §3111.33 (Baldwin 1988).

40. See, e.g., Margery W. Shaw, "Conditional Prospective Rights of the Fetus," Journal of Legal Medicine 5 (1984): 63-116. Also see "Constitutional Limitations on State Intervention in Prenatal Care, Virginia Law Review 67 (1981): 1051-1067; 1051, 1052.

41. The primary risk is infection. Lori B. Andrews, New Conceptions: A Consumer's Guide to the Newest Infertility Treatments Including in Vitro Fertilization, Artificial Insemination, and Surrogate Motherhood (New York: Ballantine, 1985), 59.

42. Ibid., 69. Amniocentesis presents a 1 in 200 risk of fetal death. Chorionic villi sampling presents a two to three percent risk of fetal death. Office of Technology Assessment, U.S. Congress, Human Gene Therapy--Background Paper , Appendix A (1984), 65.

43. U. M. Mueller, C. S. Hanes, A. E. Wright, A. Petropoulos, E. DeBoni, F. A. Firgaira, A. A. Morley, D. R. Turner, and W. R. Jones, "Isolation of Fetal Trophoblast Cells From Peripheral Blood of Pregnant Women," Lancet 336 (1990): 197-200.

44. According to the researchers, "because the FACS procedure requires sampling of maternal blood rather than amniotic fluid, it could make widespread screening in younger women feasible. . . . Widespread screening is desirable because the relatively large number of pregnancies in women below 35 years old means that they bear the majority of children with chromosomal abnormalities despite the relatively low risk of such abnormalities in pregnancies in this age group." L. A. Herzenberg, D. W. Bianchi, J. Schroder, H. M. Cann, and G. M. Iverson, "Fetal Cells in the Blood of Pregnant Women: Detection and Enrichment by Fluorescence-Activated Cell Sorting," Proceedings of the National Academy of Science 76 (1979): 1453-1455, p. 1455.

45. Jacobson v. Massachusetts , 197 U.S. 11 (1905).

46. C. Damme, "Controlling Genetic Disease Through Law," University of California Davis Law Review 15 (1982): 801-807, p. 807.

47. M. Goodman and L. Goodman, "The Overselling of Genetic Anxiety," Hastings Center Report 12 (1982): 20-27, p. 24, citing Clow and Scrivner, "The Adolescent Copes with Genetic Screening: A Study of Tay-Sachs Screening Among High School Students," in M. Kabach, Tay-Sachs Disease: Screening and Prevention (New York: A. R. Liss, 1977), 381-393.

48. J. T. R. Clark, "Screening for Carriers of Tay-Sachs Disease: Two Approaches," Canadian Medical Association Journal 119 (1978): 549-550, p. 550.

49. L. A. Farrer, "Suicide and Attempted Suicide in Huntington Disease: Implications For Pre-clinical Testing of Persons at Risk," American Journal of Medical Genetics 24 (1986): 305-311. break

50. Nancy S. Wexler, "A Genetic Jeopardy and the New Clairvoyance," Progress in Medical Genetics 6 (1985): 277-304; 298.

51. "Participation in a genetic screening program should not be made mandatory by law, but should be left to the discretion of the person tested, or, if a minor, of the parents or legal guardian." Committee for the Study of Inborn Errors of Metabolism, Division of Medical Sciences, Assembly of Life Sciences, National Research Council, "Recommendations" in Genetic Screening: Programs, Principles, and Research (1975), 1, 4.

52. Lori B. Andrews, "Informed Consent Statutes and the Decisionmaking Process," Journal of Legal Medicine 5 (1984): 163-217, pp. 215-216. In the reproductive context, earlier U.S. Supreme Court cases involving abortion provided particularly strong protection against governmental actions that required people to receive information since information in the context of reproductive decisions can coerce an individual to make a particular decision. City of Akron v. Akron Center for Reproductive Health , 462, U.S. 416, 445 (1993); Thornburgh v. American College of Obstetricians and Gynecologists , 476 U.S. 747. However, the recent U.S. Supreme Court case, Planned Parenthood v. Casey , 505 U.S.------, 112 S.Ct. 2791, 120 L.Ed. 2d 674 (1992), may have overruled this aspect of Akron and Thornburgh . The three Justices who wrote the Joint Opinion in Casey expressly overruled Akron and Thornburgh to the extent that those cases "find a constitutional violation when the government requires . . . the giving of truthful, nonmisleading information about the nature of the [abortion] procedure, the attendant health risks and those of childbirth, and the 'probable gestational age' of the fetus" (p. 718). The three Justices stated that Akron and Thornburgh had gone too far in that respect and were "inconsistent with Roe 's acknowledgment of an important interest in potential life," namely, the state's legitimate goal of protecting fetal life (pp. 718-719).

Because the two concurring Justices did not join in this part of the Opinion, the Joint Opinion relies on the conclusions of the four dissenting Justices to reach the required majority (pp. 717-718). When Justice Rehnquist's dissent discusses Thornburgh in the context of informed consent, however, it does not join in the overruling of these cases. Instead, Rehnquist simply states that Thornburgh is not controlling (p. 775) (Rehnquist, J., dissenting). Rehnquist acknowledges that the Joint Opinion expressly overrules Akron and Thornburgh , in part, under the "undue burden" standard of review adopted there, but then points out that this standard does not enjoy the majority support of the Court (pp. 765, 772). It does not enjoy the support of the four dissenting Justices.

The effect of the Plurality Opinion in Casey is that the Pennsylvania abortion statute's informed consent requirements were upheld despite the rulings of Akron and Thornburgh . Whether this constitutes an overruling of those continue

cases is unclear. Even if the Joint Opinion legitimately overrules the informed consent portion of Akron and Thornburgh , its language is narrowly drawn. Thus, its application to other cases and different fact patterns, such as mandatory screening for genetic disorders, may be inappropriate or ineffectual (1986).

53. Wexler, "Genetic Jeopardy," 295.

54. See, e.g., P. R. Billings, M. A. Kohn, M. de Cuevas, J. Beckwith, J. S. Alper, and M. R. Natowicz, "Discrimination as a Consequence of Genetic Testing," American Journal of Human Genetics 50 (1992): 476-482.

55. U.S. Congress, Office of Technology Assessment, Cystic Fibrosis and DNA Tests: Implications of Carrier Screening (August 1992), 200.

56. The disorders included adult polycystic kidney disease, Huntington's disease, neurofibromatosis, Marfan's syndrome, Down's syndrome, and Fabray's disease.

57. The conditions included a balanced translocation.

58. The disorder was cystic fibrosis.

59. Dorothy Wertz and John C. Fletcher, Ethics and Human Genetics: A Cross-Cultural Perspective (New York: Springer-Verlag, 1989), 440.

60. Murray Weinstock and Jacob I. Haft, "The Effect of Illness on Employment Opportunities," Archives of Environmental Health 29 (1974): 79-83; 83. ("The results of this study suggest that in the area sampled, even patients with mild illnesses, which may not increase their morbidity or mortality, are being denied work").

61. M. Baram, "Charting the Future Course for Corporate Management of Genetics and other Health Risks," in A. Milunsky and G. Annas, eds., Genetics and the Law III (New York: Plenum, 1985), 475, 480.

62. James Bowman, "Identification and Stigma in the Workplace," in J. Weiss, B. Bernhardt, and N. Paul, eds., "Genetic Disorders and Birth Defects in Families and Society: Toward Interdisciplinary Understanding," Birth Defects Original Article Series 20 (1984): 223-225; 225.

63. Lifchez v. Hartigan , 735 F. Supp. 1361 (N.D. Ill.), aff'd. , 915 F.2d 260 (7th Cir. 1990), cert. denied sub. nom., Scholberg v. Lifchez , 498 U.S. 1069, 111 S.Ct. 787 (1991).

64. For example, in New York Times v. United States , 403 U.S. 713 (1971), the U.S. Supreme Court, in a per curium opinion held that the government had not met its "heavy burden" of proving that national security required that the Pentagon Papers be suppressed. The logic of the case was explained further in the concurrences; the right of free speech is to be infringed by a prior restraint only when disclosure "will surely result in direct, immediate, and irreparable damage to our Nation or its people" (p. 730) (Stewart, J., concurring) or when there is "governmental allegation and proof that publication must inevitably, directly, and immediately cause the occurrence of continue

an event kindred to imperiling the safety of a transport already at sea . . ." during wartime (pp. 726-727) (Brennan, J., concurring).

The standard of irreparability for granting an injunction against protected speech is an absolute, not a comparative, standard. Even if the speech could cause great harm, that would not be sufficient. As Justice White pointed out in his concurrence in New York Times , it is not sufficient that there may be "substantial damage to public interests" (p. 731) (White, J., concurring.) Similarly, Justice Stewart said "I am convinced that the Executive is correct with respect to some of the documents involved [i.e., they should not, in the national interest be published]. But I cannot say that disclosure of any of them will surely result in direct, immediate, and irreparable harm to our Nation or its people. That being so, there can under the First Amendment be but one judicial resolution of the issue before us" (p. 730) (White, J., concurring).

Even if irreparable harm were a possibility, New York Times indicates that an injunction should not be issued against the press unless such harm would come about directly and immediately. The term immediately is easy enough to understand; it requires a present, not future, harm. The term directly relates to the lack of intervening influences during that time period. The irreparable harm would not occur directly if another important influence would or could intervene. Another way of expressing the immediacy and directness that is necessary is by saying the harm is inevitable --it will occur within a short period of time during which nothing will or could change it or stop it.

Even when a prior restraint is not at issue, high standards are required for showing a compelling state interest when a fundamental right is at issue. Also in the First Amendment area, speech that is not false should not be the basis for subsequent punishment unless it provided an immediate threat of serious harm. (See, e.g., Bridges v. California , 314 U.S. 252, 263 (1941); "the substantial evil must be extremely serious and the degree of imminence extremely high before utterances can be punished").

65. Jacobson v. Massachusetts , 197 U.S. 11 (1905).

66. Moreover, it should be noted that this risk (transmission of genetic disease to offspring) is one that society has always lived with and seems to have flourished despite that risk.

67. See, e.g., the discussion of New York Times v. United States in note 64.

68. In U.S. Supreme Court cases, the goal of protecting the public treasury has not been found to be superior to protecting individual rights. A person's right to travel is recognized as more important than the drain on the welfare system of the state to which he moves. See, e.g., Edwards v. California , 314 U.S. 160 (1941). Due to a person's fundamental right of privacy to make procreative decisions, a state may not condition welfare on an in- soft

dividual's cessation of childbearing. "People are free to move and to be burdens on the state, and procreate and be burdens with their children on the state. If the consequence of a protected act means direct state support, that is the unpredictable price a free society has to pay." Jonathan A. Weiss and Stephen B. Wizner, "Pot, Prayer, Politics, and Privacy: The Right To Cut Your Own Throat in Your Own Way," Iowa Law Review 54 (1969): 709-735, pp. 733-734. Weiss and Wizner point out that the government in other ways uses its finances to support choice in the area of constitutional freedom: "Armies are raised and supported so that people may live freely. The consequent loss of income and burden on the state are the price of supporting freedoms of choice" (p. 734, n. 113). Thus, there are valid policy reasons for not holding potential economic costs as a sufficiently compelling governmental interest to outweigh the privacy right to make reproductive decisions.

69. See, e.g., Robert Steinbrook, "In California, Voluntary Mass Prenatal Screening," Hastings Center Report 16 (1986): 5-8; 5; 17 Calif. Code of Administrative Regulations 6527 (1992).

70. Mich. Comp. Laws Ann. §333.5431 (West 1992); Mont. Code Ann. §50-19-203 (1991); W. Va. Code §16-22-3 (Miche Supp. 1992).

71. Andrews, Medical Genetics , 238.

72. Ibid., citing laws in Alabama (1984), California, Connecticut, Georgia, Hawaii, Idaho, Illinois, Indiana, Kansas, Kentucky, Massachusetts, Minnesota, Mississippi, Missouri, Nebraska, New Jersey, New York, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, Washington, and Wisconsin. In another state, the law empowers an agency to determine whether testing should be mandatory. In Maine, the Department of Human Services is authorized to make the program mandatory, but provision for religious objection is made.

73. Ibid., citing laws in Alaska, Arizona, Colorado, Florida, Louisiana, Nevada, New Hampshire, New Mexico, and Wyoming.

71. Andrews, Medical Genetics , 238.

73. Ibid., citing laws in Alaska, Arizona, Colorado, Florida, Louisiana, Nevada, New Hampshire, New Mexico, and Wyoming.

71. Andrews, Medical Genetics , 238.

73. Ibid., citing laws in Alaska, Arizona, Colorado, Florida, Louisiana, Nevada, New Hampshire, New Mexico, and Wyoming.

74. Mo. Ann. Stat. §191.331(5) (Vernon 1990); S.C. Code §44-37-30(B) (1991).

75. Dellbert A. Fisher, Barbara L. Foley, and Marvin Mitchell, "Problems and Pitfalls of Newborn Screening Programs Based on the Experience in California and New England," in Lori B. Andrews, ed., Legal Liability and Quality Assurance in Newborn Screening (Chicago: American Bar Foundation, 1985), 38, 39.

76. Delbert Fisher presentation, Conference on Legal Liability in Newborn Screening, American Bar Foundation (15-16 October 1984).

77. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Screening and Counseling for Genetic Condi- soft

tions: The Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs (Washington, D.C.: U.S. Government Printing Office, 1983), 6.

78. Ruth Faden, A. Judith Chwalow, Neil A. Holtzman, and Susan D. Horn, "A Survey to Evaluate Parental Consent As Public Policy for Neonatal Screening," American Journal of Public Health 72 (1982): 1347-1352, p. 1350.

79. Stephen Sepe, Harvey Levy, and Frank Mount, "An Evaluation of Routine Follow-Up Blood Screening of Infants for Phenylketonuria," New England Journal of Medicine 300 (1979): 606. See Andrews, Medical Genetics , for an analysis of the voluntary or mandatory nature of screening in each state.

80. Faden et al., "Survey to Evaluate," 1350.

81. 106 Cal. App. 3d 811, 829, 165 Cal. Rptr. 477 (2d Dist. 1980).

82. Subsequently, California and five other states adopted statutes eliminating such a cause of action. Cal. Civ. Code §43.6 (West 1982); Idaho Code §5-334 (1990); Minn. Stat. Ann. §145.424(1) (West 1989); N.D. Cent. Code §32-03-43 (Supp. 1991); S.D. Codified Laws §21-55-1 (1987); and Utah Code Ann. §78-11-24 (1992).

83. Grodin v. Grodin , 102 Mich. App. 396, 301 N.W.2d 869 (1980).

84. Cal. Civ. Code §43.6 (West 1982); Idaho Code §5-334 (1990); Minn. Stat. Ann. §145.424(1) (West 1989); N.D. Cent. Code §32-03-43 (Supp. 1991); S.D. Codified Laws §21-55-1 (1987); Utah Code Ann. §78-11-24 (1992).

85. Turpin v. Sortini , 31 Cal. 3d 220, 643 P.2d 954, 959, 182 Cal. Rptr. 337 (1982).

86. Alexander Capron, "Legal Rights and Moral Rights," in B. Hilton, D. Callahan, M. Harris, P. Condliffe, and B. Berkeley, eds., Ethical Issues in Human Genetics: Genetic Counseling and The Use of Genetic Knowledge (Fogarty International Proceedings No. 13, 1973), 221, 237.

87. Ibid., at 236.

88. Fla. Stat. Ann. §626.9706(1) (West 1984); La. Rev. Stat. Ann. §22:652.1(D) (West Supp. 1992).

89. Fla. Stat. Ann. §626.9707(1) (West 1984); La. Rev. Stat. Ann. §22:652.1(D) (West Supp. 1992).

90. Fla. Stat. Ann. §626.9076(2) (West 1984) (life insurance); §626.9707(2) (West 1984) (disability insurance); La. Rev. Stat. Ann. §22:652.1(D) (West Supp. 1992).

91. Cal. Ins. Code §10143 (West Supp. 1992).

92. Cal. Health & Safety Code §1374.7 (West 1990)

93. 1991 Wisc. Act 269 , codified as Wisc. Stat. Ann. §631.89.

94. 104 Stat. 327 (1991), 42 U.S.C.A. §12101 et seq. (Supp. 1992).

95. 42 U.S.C.A. §12112(4)(A) (Supp. 1992).

96. Letter by Elizabeth M. Thorton, Deputy Legal Director, U.S. Equal continue

Employment Opportunity Commission to Drs. Paul Berg and Sheldon Wolff, Co-Chairmen, NIH-DOE Joint Subcommittee on the Human Genome, 2 August 1991.

97. Andrews, Medical Genetics , 18.

98. This same law appears in three places in the Florida statutes: Fla. Stat. Ann. §448.076 (West 1981); §228.201 (West 1989); and §63.043 (West 1985).

99. Fla. Stat. Ann. §448.075 (West 1981); N.C. Gen. Stat. §95-28.1 (1989); La. Rev. Stat. Ann. §23:1002(A)(1) (West 1985).

100. La. Rev. Stat. Ann. §23:1002(C)(1) (West 1985).

101. N.J. Stat. Ann. §10:5-12(a) (West Supp. 1992).

102. N.Y. Civ. Rights Law §48 (McKinney 1992).

103. Iowa Code Ann. §729.6 (West 1992); Wis. Stat. §111.372 (1991-1992). break

An earlier version of this paper was presented at a workshop on "The Impact of Molecular Genetics on Society," held at the Banbury Center, Cold Springs Harbor, New York, 5-8 Nov. 1990. I would also like to acknowledge the comments on the proposed "rules" by the participants at a AAAS/ABA Conference on Ethical and Legal Aspects of Large Pedigree Genetic Research, Wild Dunes, Charleston, South Carolina, 13-15 March 1992, which were of great assistance in completing this paper.

5— Rules for Gene Banks: Protecting Privacy in the Genetics Age

1. Diane Wood Middlebrook, Anne Sexton: A Biography (Boston: Houghton Mifflin, 1991). See also "Confidentiality in Psychotherapy--The Case of Anne Sexton," New England Journal of Medicine 325 (1991): 1450-1451.

2. L. K. Altman, "Johnson Will Get Drug Treatment To Fight Virus," New York Times, 9 November 1991, p. 33.

3. Ibid.

2. L. K. Altman, "Johnson Will Get Drug Treatment To Fight Virus," New York Times, 9 November 1991, p. 33.

3. Ibid.

4. R. Lacayo, "Nowhere to Hide," Time, 11 November 1991, 34-40. And see M. W. Millerm, "Patients' Records are Treasure Trove for Budding Industry," Wall Street Journal, 27 February 1992, p. 1.

5. C. Anderson, "Evolution of a Gadfly," Nature 353 (1991): 686-687.

6. Ibid.

5. C. Anderson, "Evolution of a Gadfly," Nature 353 (1991): 686-687.

6. Ibid.

7. G.J. Annas, The Rights of Patients (Carbondale, IL: Southern Illinois Univ. Press, 1989), 175-195.

8. Allan Westin, Privacy and Freedom (New York: Atheneum, 1967), 7.

9. Ibid.

8. Allan Westin, Privacy and Freedom (New York: Atheneum, 1967), 7.

9. Ibid.

10. Horne v. Patton, 291 Ala. 701, 287 So. 2d 824 (1973).

11. Miller, "Personal privacy in the computer age," 67 Mich. L. Rev. 1091, 1107 (1968).

12. Portions of this section were adapted from G.J. Annas, "DNA Fingerprinting in the Twilight Zone," Hastings Center Report 20 (1990): 35-37.

13. The standard method of DNA fingerprinting uses the same restriction fragment length polymorphism (RFLP) analysis used in genetic testing and screening. Restriction enzymes recognize and cut specific nucleotide sequences in DNA molecules. Since the nucleotide sequences in the human continue

genome vary widely from person to person, the restriction sites will also vary and therefore the length and content of the fragments. RFLP analysis rests on the finding that two samples of DNA from the same individual will produce the same DNA fragments, whereas samples from different individuals (other than identical twins) will produce different fragments from the same site. See G.J. Annas, "Setting Standards for the Use of DNA-Typing Results in the Courtroom--The State of the Art," New England Journal of Medicine 326 (1992): 1641.

14. Quoted in Annas, "DNA Fingerprinting," 36.

15. U.S. v. Jakobetz, 955 F.2d 786 (2d Cir. 1992); State v. Two Bulls, 918 F. 2d 56 (8th Cir. 1990).

16. Frye v. U.S., 293 F. 1013 (D.C. Cir. 1923).

17. L. H. Glantz, "A Nation of Suspects: Drug Testing and the Fourth Amendment," American Journal of Public Health 79 (1989): 1427-1431. See also P. Aldhous, "Challenge to British Forensic Database," Nature 355 (1992): 191.

18. Privacy Protection Study Commission, Personal Privacy in an Information Society (Washington D.C.: U.S. Government Printing Office, 1977).

19. The recommendations quoted and summarized here are among the fourteen made on pages 292-317 in Personal Privacy in an Information Society .

20. George J. Annas and Sherman Elias, eds., Gene Mapping: Using Law and Ethics as Guides (New York: Oxford University Press, 1992), 9-10; George J. Annas, "Privacy Rules for DNA Databases Protecting Coded 'Future Diaries,'" Journal of the American Medical Association 270 (1993): 2346-2350.

21. See, e.g., Gina Kolata, "Cancer-Causing Gene Found; with a Clue to How it Works," New York Times, 6 May 1993, p. A1.

22. From Anne Sexton, "In Celebration of My Uterus," in Love Poems (Boston: Houghton Mifflin, 1967). break

The opinions expressed in this article are those of the author. They are not necessarily shared by any insurer or the insurance industry in general.

6— Use of Genetic Information by Private Insurers

1. H. T. Bailey, T. M. Hutchinson, G. R. Narber, "The Regulatory Challenge to Life Insurance Classification," Drake Law Review Insurance Annual 25 (1976).

2. Record of the Society of Actuaries , San Francisco Meeting, 14-15 June 1990, 16:3 (1990): 1362.

3. "Ethics and the Human Genome," Nature 351 (1991): 591. break

Acknowledgment: This work was in part supported by the National Endowment for the Humanities (RH20917) and the National Library of Medicine (1RO1LM05005).

7— The Genome Project, Individual Differences, and Just Health Care

1. Norman Daniels, "Insurability and the HIV problem: Ethical Issues in Underwriting," Milbank Quarterly 68:4 (1990); 497-526.

2. S. E. Antonarkakis, "Diagnosis of Genetic Disorders at the DNA Level," New England Journal of Medicine 320 (1989): 153-161.

3. J. D. Hammond and A. F. Shapiro, "AIDS and the Limits of Insurability," Milbank Quarterly 64:1 (1986): 143-167.

4. K. A. Clifford and R. P. Iuculano, "AIDS and Insurance: The Rationale for AIDS-related testing, " Harvard Law Review 100 (1987): 1807-1809. Emphasis added.

5. Robert Nozick, Anarchy, State, and Utopia (New York: Basic Books, 1974).

6. David Gauthier, Morals by Agreement (Oxford, U.K.: Oxford University Press, 1986)

7. John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 1971).

8. John Rawls, "Kantian Constructivism in Moral Theory," Journal of Philosophy 77:9 (1980): 515-572. Also relevant is John Rawls, "Justice as Fairness: A Briefer Description" (unpubl. ms., 1989). break

9. H. Tristam Engelhardt, Jr., The Foundations of Bioethics (New York: Oxford University Press, 1986).

10. Norman Daniels, Just Health Care (Cambridge, U.K.: Cambridge University Press, 1985).

11. John Rawls, "Social Unity and Primary Goods," In A. Sen and B. Williams, eds., Utilitarianism and Beyond (Cambridge, U.K.: Cambridge University Press, 1982), 159-186. See also Daniels, "Just Health Care," 23-25.

12. Rawls, "Social Unity." See also Ronald Dworkin, "What is Equality? Part I: Equality of Welfare," Philosophy and Public Affairs 10:3 (1982): 185-246.

13. G. A. Cohen, "On the Currency of Egalitarian Justice," Ethics 99 (1989): 906-944. See also R. J. Arneson, "Equality and Equal Opportunity for Welfare," Philosophical Studies 54 (1988): 79-95.

14. Norman Daniels, "Equality of What: Welfare, Resources, or Capabilities?" Philosophy and Phenomenological Research 50 (1990, supp.): 273-296.

15. Christopher Boorse, "Health as a Theoretical Concept," Philosophy of Science 44 (1977): 542-573. See also Christopher Boorse, "On the Distinction Between Disease and Illness," Philosophy and Public Affairs 5:1 (1975): 49-68

16. D. B. Allen and N. C. Fost, "Growth Hormone Therapy for Short Stature: Panacea or Pandora's Box?" Journal of Pediatrics 117:1 (1990): 16-21.

17. Rawls, A Theory of Justice .

18. A. Sen, "Justice: Means Versus Freedoms," Philosophy and Public Affairs 19 (1990): 111-121.

19. Daniels, Just Health Care , chap. 8.

20. Richard Lewontin, "The Dream of the Human Genome," The New York Review of Books , 28 May 1992, pp. 31-40. break

8— Just Genetics: A Problem Agenda

1. Munson and Davis have in fact argued that there is a strong social obligation requiring the development of these technologies. See Ronald Munson and Lawrence Davis, "Germ-Line Gene Therapy and the Medical Imperative," Kennedy Institute of Ethics Journal 2 (1992): 137-58.

2. Michael Walzer, Spheres of Justice: A Defense of Pluralism and Equality (New York: Basic Books, 1983), especially chap. 1.

3. Leonard M. Fleck, "Just Health Care (I): Is Beneficence Enough?" Theoretical Medicine 10 (1989): 167-182; and "Just Health Care (II): Is Equality Too Much?" Theoretical Medicine 10 (1989): 301-310.

4. John Rawls, "Kantian Constructivism in Moral Theory," The Journal of Philosophy 72 (1980): 515-572.

5. John Rawls, "Justice as Fairness: Political Not Metaphysical," Philosophy and Public Affairs 14 (1985): 223-251.

6. Leonard M. Fleck, "DRGs: Justice and the Invisible Rationing of Health Care Resources," The Journal of Medicine and Philosophy 12 (1987): 165-196, especially pp. 165-176 which offers a detailed outline of the framework of nonideal justice. For another application of this framework to Oregon's approach to health care rationing, see Fleck's essay, "The Oregon Medicaid Experiment: Is It Just Enough?" Business and Professional Ethics Journal 9 (1990): 201-217.

7. William Schwartz, "The Inevitable Failure of Current Cost Containment Strategies," The Journal of the American Medical Association 257 (1987): 220-224.

8. Helen Burstin, Stuart Lipsitz, and Troyen Brennan, "Socioeconomic Status and Risk for Substandard Medical Care," Journal of the American Medical Association 268 (1992): 2383-2387.

9. See Yury Verlinsky, Eugene Pargament, and Charles Strom, "The Preimplantation Genetic Diagnosis of Genetic Diseases," Journal of In-Vitro Fertilization and Embryo Transfer 7 (1990): 1-5; A. Dokras et al., "Trophectoderm continue

Biopsy in Human Blastocysts," Human Reproduction , 5 (1990): 821-825. More generally, see Andrea Bonnicksen, "Genetic Diagnosis of Human Embryos," The Hastings Center Report 22 (1992, suppl.): S5-S11.

10. John B. Attanasio, "The Constitutionality of Regulating Human Genetic Engineering: Where Procreative Liberty and Equal Opportunity Collide," The University of Chicago Law Review 53 (1986): 1274-1342.

11. George Agich, "Genetic Justice," University of Western Ontario Law Review 24 (1986): 39-50.

12. Daniel R. DeNicola, "Genetics, Justice, and Respect for Human Life," Zygon 11 (1976): 115-137.

13. Daniel Callahan, What Kind of Life: The Limits of Medical Progress (New York: Simon and Schuster, 1990), 31-68.

14. Norman Daniels, Just Health Care (Cambridge, U.K.: Cambridge University Press, 1985), 36-58.

15. Agich, "Genetic Justice," 47-50; DeNicola, "Genetics, Justice, and Respect," 116-124.

16. We concede that there is always the possibility of future genetic mutations, but an effective technique for genetic engineering would at least offer reasonable hope that this genetic deficiency would not turn up again in this family line.

17. Norman Daniels, Am I My Parents' Keeper: An Essay on Justice Between the Young and the Old (Oxford, U.K.: Oxford University Press, 1988), 66-82.

18. Daniels, Just Health Care , 36-48. break

9— Justice and the Limitations of Genetic Knowledge

1. See especially Diana Brahams, "Human Genetic Information: The Legal Implications," Human Genetic Information: Science, Law, and Ethics (Chichester, U.K.: John Wiley & Sons, 1990), Ciba Foundation Symposium 149 (1990): 111-132.

2. U.S. Department of Health and Human Services, The Human Genome Project: New Tools for Tomorrow's Health Research (1991), 3.

3. Ibid., 3-4.

2. U.S. Department of Health and Human Services, The Human Genome Project: New Tools for Tomorrow's Health Research (1991), 3.

3. Ibid., 3-4.

4. See C. Wills, Exons, Introns, and Talking Genes: The Science Behind the Human Genome Project (New York: Basic Books, 1991).

5. Ibid., 3.

4. See C. Wills, Exons, Introns, and Talking Genes: The Science Behind the Human Genome Project (New York: Basic Books, 1991).

5. Ibid., 3.

6. See R. C. Lewontin and D. L. Hartl, "Population Genetics in Forensic DNA Typing," Science 295 (1991): 1745-1750.

7. A. E. Mourant, The Distribution of the Human Blood Groups (Oxford, U.K.: Blackwell, 1954).

8. See Marc Lappé, "Ethical Issues in Screening for Chronic Lung Disease," Journal of Occupational Medicine 30 (1988): 493-501.

9. R. C. Lewontin and D. L. Hartl, "Response," Science 255 (1992): 1054-1055.

10. S. S. Deeb, R. A. Failor, B. G. Brown, J. D. Brunzell, A. G. Motulsky et al., "Association of Apolipoprotein B Gene Variants with Plasma apoB and Low Density Lipoprotein (LDL) Cholesterol Levels," Human Genetics 88 (1992): 463-470.

11. See Marc Lappé, Genetic Politics (New York: Simon and Schuster, 1987).

12. B. P. Dohernwend, I. Levav, P. E. Shrout, et al., "Socioeconomic Status and Psychiatric Disorders: The Causation-Selection Issues," Science 255 (1992): 946-951.

13. See Constance Holden, "Depression: The News Isn't Depressing," Science 254 (1991): 1451-1453. break

14. David W. E. Smith, "Variability in Life Span Functional Capacity," in A. D. Woodhead, M. A. Bender, and R. C. Leonard, Phenotypic Variation in Populations, Basic Life Sciences, vol. 43 (New York: Plenum Press, 1988), 172-180.

15. See John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 1971).

16. "The Declaration of Inuyama and Reports of the Working Groups," Human Gene Therapy 21 (1991): 123-129.

17. See Stephen L. Brown, "Differential Susceptibility: Implications for Epidemiology, Risk Assessment, and Public Policy," in Woodhead et al., Phenotypic Variation in Populations, 255-270.

18. Lappé, "Ethical Issues."

19. See K. Honda et al., "HLA and silicosis in Japan," New England Journal of Medicine 319 (1988): 1610 break