1 Spina bifida is a congenital malformation of the spine frequently creating a protrusion called a myelomeningocele, in which a sac of nerve tissue bulges through a cleft in the spine and is exposed to the air without the protection of the vertebrae or skin. Various degrees of paralysis occur, primarily depending upon the location of the defect on the spine. Often hydrocephalus (excessive fluid on the brain) accompanies spina bifida and will produce mental retardation if a shunt is not implanted to drain the fluid. See Exceptional Children and Youth 303 (N. Haring 3d ed. 1982); E. Bleck & D. Nagel, Physically Handicapped Children: A Medical Atlas for Teachers 345-62 (2d ed. 1982).

2 Down's Syndrome is a chromosomal defect causing moderate to severe retardation accompanied by physical anomalies. For a medical summary, see E. Bleck & S. Nagel, supra note 1, at 279-91.

3 For a sample of the articles that aroused public interest during the 1970's, see Freeman, The God Committee, N.Y. Times, May 21, 1972, § 6 (Magazine), at 84 (describing desirability of interdisciplinary committees to assist medical staff and parents in decisions to treat or withhold treatment from severely defective newborns. Johns Hopkins Hospital established such a committee after parents refused to consent to surgery for their Down's Syndrome newborn with an esophageal blockage); Shaw, Doctor, Do We Have a Choice?, N.Y. Times, Jan. 30, 1972, § 6 (Magazine), at 44 (describing a case where doctors, honoring a parental request, did not surgically correct an esophageal block in a Down's Syndrome child, thereby allowing the child to die). Early articles alerting the medical and legal communities to such dilemmas include Duff, & Campbell, , Moral and Ethical Dilemmas in the Special-Care Nursery, 289 New Eng. J. Med. 890 (1973)CrossRefGoogle Scholar (reporting that 43 out of 299 deaths in the special care nursery at the Yale-New Haven Hospital resulted from decisions not to treat) and Robertson, , Involuntary Euthanasia of Defective Newborns: A Legal Analysis, 27 Stan. L. Rev. 213 (1975)CrossRefGoogle Scholar.

4 For a discussion of educational techniques used to habilitate the severely handicapped, see Snell & Renzaglia, Moderate, Severe, and Profound Handicaps, Exceptional Children and Youth 143-69 (N. Haring & L. McCormick 4th ed. 1986).

5 The American Association on Mental Deficiency (AAMD) defines the profoundly retarded as those testing below a score of approximately 20 on a standardized intelligence test and having severe adaptive behavior problems likely to result in total dependence upon others for personal care needs. See Manual on Terminology and Classification In Mental Retardation (H. Grossman ed. 1977) (published by the AAMD).

6 See, e.g., Rickham, , The Ethics of Surgery in Newborn Infants, 8 Clinical Pediatrics 251 (1969)Google Scholar.

7 See, e.g., M. Tooley, Abortion and Infanticide (1983). Tooley goes even further, arguing that fetuses and infants in general lack the requisite recollection of past states, ability to envisage and desire a future, and sense of personal identity necessary to qualify for the basic rights of personhood.

8 106 S. Ct. 2101 (1986).

9 The “New Deal” of the 1930's inaugurated a new era of social legislation in this country. Since then, the U.S. Congress has enacted a steady stream of health and welfare legislation. The so-called federal “entitlement” programs (such as Social Security retirement income, civil-service and military pensions, Medicare, Medicaid, unemployment insurance, Aid to Families with Dependent Children, which distribute financial benefits to individuals who are entitled to the funds by virtue of such characteristics as age, income, or occupation) constituted nearly 50% of the federal budget by 1980. See Fallows, Entitlements, Atlantic Monthly, Nov. 1982, at 51, 52.

10 E.g., child labor laws incorporated into the Fair Labor Standards Act of 1938, as amended, 29 U.S.C. §§ 201, 212 (1982); Aid to Dependent Children, first enacted into Social Security legislation in 1944, now Aid to Families with Dependent Children, 42 U.S.C. §§ bui-b08 (1982). Maternal and Child Health programs, such as the Child Nutrition Act of 1966, 42 U.S.C. §§ 1771-1789 (1982) (establishing school breakfast program for eligible children), and the National School Lunch Act of 1946, as amended, 42 U.S.C. § 1751-1769(c) (1982 & Supp. Ill 1985).

11 See, e.g., Civil Rights Act of 1964, 42 U.S.C. §§ 1971, 1975a-1975d, 2000a-2000h(6) (1982) (prohibiting, inter alia, discrimination or segregation in places of public accommodation, public facilities, public education, and employment); the Fair Housing Act of 1968, 42 U.S.C. §§ 3601-3619, 3631 (1982 & Supp. Ill 1985) (barring racial discrimination in the public and private sale and rental of real property); the Equal Employment Opportunity Act of 1972, amending and expanding 42 U.S.C. § 2000e-2000h(6) (1982) (prohibiting, inter alia, employment discrimination on the basis of race or ethnic origin).

12 See, e.g., Equal Pay Act of 1963, 29 U.S.C. § 206(d)(1) (1982 & Supp. Ill 1985) (requiring equal pay for equal work regardless of gender); Civil Rights Act of 1964, as amended, 42 U.S.C. § 2000e (1982) (prohibiting, inter alia, employment discrimination on the basis of sex); Higher Education Amendments of 1972, 20 U.S.C. §§ 1681-1686 (1982) (prohibiting discrimination on the basis of sex in education programs or activities receiving federal financial assistance).

13 See, e.g., the original Social Security Act of 1935 and its multitude of subsequent amendments, 42 U.S.C. §§ 401-433 (1982 & Supp. Ill 1985) (establishing Old-Age, Survivors, and Disability Insurance programs for eligible recipients); the unemployment compensation programs, 42 U.S.C. §§ 501-504 (1982 & Supp. Ill 1985), and welfare programs such as Aid to Families with Dependent Children (AFDC), 42 U.S.C. §§601-608 (1982 & Supp. Ill 1985), administered by the states; Economic Opportunity Act of 1964, as amended, 42 U.S.C. §§2701-2996 (1982 & Supp. Ill 1985) (establishing Head Start, the Job Corps, Community Action Programs, etc.); Supplementary Security Income Act (Title XVI of the Social Security Act), 42 U.S.C. § 1381 (1982) (providing aid to the aged, blind, and disabled whose lack of earnings make them ineligible under the federal retirement or disability programs); Social Security Amendments of 1965 (Title XIX of the Social Security Act, i.e., Medicaid), 42 U.S.C. §§ 1396-1396p (1982) and the Food Stamp Act of 1977, 7 U.S.C. §§ 2011-2029 (1982 & Supp. Ill 1985).

14 See, e.g., Older Americans Act of 1965, 42 U.S.C. §§ 3001-3057g (1982 & Supp. Ill 1985); the Health Insurance for the Aged Act (Title XVIII of the Social Security Act, i.e., Medicare), 42 U.S.C. §§ 1395-1395xx (1982 & Supp. Ill 1985); Age Discrimination Act of 1975, 42 U.S.C. §§ 6101-6107 (1982) (prohibiting age discrimination in programs or activities receiving federal financial assistance).

15 See, e.g., Social Security Amendments of 1965, as amended (Title XIX, i.e., Medicaid), 42 U.S.C. §§ 1396-1396p (1982 & Supp. Ill 1985) (providing financial aid to the medically needy who meet income qualifications) and the Health Insurance for the Aged Act, as amended (Medicare), 42 U.S.C. §§ 1395-1395xx (1982 & Supp. Ill 1985) (providing financial aid to the medically needy who meet age and other eligibility requirements).

16 See, e.g., Higher Education Act of 1965, as amended, 20 U.S.C. §§ 1001-1099 (1982 & Supp. Ill 1985) (sections of which provide grants, loans, and work-study programs for eligible students from middle-income homes); and the Internal Revenue Code (which, even under the Tax Reform Act of 1986, Pub. L. No. 99-514, 100 Stat. 2085 (1986) continues to provide tax deductions—a form of federal subsidy—for itemized charitable contributions and for interest payments on one's home).

17 U.S. 483 (1954).

18 The term derives from decisions requiring treatment of the institutionalized mentally ill in the least restrictive environment in which treatment is feasible. See, e.g., Wyatt v. Stickney, 344 F. Supp. 373 (M.D. Ala. 1972), aff'd in part sub nom. Wyatt v. Aderholt, 503 F.2d 1305 (5th Cir. 1974.).

19 334 F. Supp. 1257 (E.D. Pa. 1971), 343 F. Supp. 279 (E.D. Pa. 1972) (consent agreement recognized right to appropriate education for the mentally retarded in the least restrictive environment in light of needs, and due process safeguards prior to placement outside the regular classroom).

20 348 F.Supp. 866 (D.D.C. 1972) (establishing right to appropriate education for all handicapped children, and procedural protections prior to exclusion from regular classroom). “See Education Amendments of 1974, Pub. L. No. 94-142, 89 Stat. 484 (1974). See also Education for All Handicapped Children Act of 1975, 20 U.S.C. §§ 1411-1443 (1982 & Supp. Ill 1985).

22 29 U.S.C. §§701-796 (1982 & Supp. Ill 1985).

23 42 U.S.C. §2000d (1982).

24 20 U.S.C. §§ 1681-1686 (1982).

25 U.S.C. §794 (1982 & Supp. Ill 1985).

26 See the original employment-related definition of “handicapped,” Rehabilitation Act of 1973, Pub. L. No. 93-112, 87 Stat. 355, 361 (1973) (current version at 29 U.S.C. § 706(7)(A)- (B) (1982)). The following year, the definition was expanded for some purposes to include “any person who (i) has a physical or mental impairment which substantially limits one or more of such person's major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment.” 29 U.S.C. § 706(7)(A)-(B) (1982).

27 See, e.g., Senate Report on the Rehabilitation Act Amendments of 1974, S. Rep. No. 1297, 93rd Cong., 2d Sess. (1974).

28 42 Fed. Reg. 22676 (1977).

29 The notice sent to all hospitals receiving federal aid is reprinted in 47 Fed. Reg. 26027 (1982).

30 When President Reagan first took office, “deregulation” was a primary focus, along with a theme of returning power to the states. The Education Consolidation and Improvement Act of 1981, Pub. L. 97-35, Title V, §§ 551-596, 95 Stat. 463-82 (codified in scattered sections of 20 U.S.C. (1982)), is one example of consolidation into block grants of what were formerly a series of categorical funding programs, giving states more flexibility in their use of the federal funds.

31 Although the government's sense of outrage, widely reported at the time, may not be captured by the following quote, its sense of commitment is. On April 30, 1982, just two weeks after the Baby Doe situation surfaced in the press, President Reagan wrote to then Secretary of Health and Human Services Richard Schweiker, directing him to invoke § 504 to prevent withholding of medical treatment from handicapped newborns. The letter included the following statement: “Our nation's commitment to equal protection of the law will have little meaning if we deny such protection [under § 504] to those who have not been blessed with the same physical or mental gifts we too often take for granted. I support federal laws prohibiting discrimination against the handicapped, and remain determined that such laws will be vigorously enforced.” Reprinted in 49 Fed. Reg. 1622, 1622-23 (1984).

32 In re Infant Doe, No. GU 8204-00 (Cir. Ct. Monroe County, Ind. April 12, 1982), writ of mandamus dismissed sub nom. State ex rel. Infant Doe v. Baker, No. 482 S. 140 (Ind. Sup. Ct. May 27, 1982) (case moot by infant's death), cert, denied, 104 S. Ct. 394 (1983).

33 Ironically, the Reagan Administration was both attempting to weaken the § 504 regulations, and to extend the coverage of § 504 to handicapped newborns. For one press report of resistance by the handicapped community to § 504 deregulation, see Disabled Protest Reagan Plan, N.Y. Times, May 1, 1982, at 14, col. 3.

34 Most groups advocating for persons with mental retardation and physical handicaps were also arguing strenuously against the right of parents to deny a Down's Syndrome child the opportunity to live out its normal life span. Groups such as the Association for Retarded Citizens (ARC) asserted that although the decision of the Baby Doe parents may have been in their own best interests, it was not in the best interests of the child or of society. See, e.g., the review of ARC efforts in Compromise Reached on Final Baby Doe Rule, ARC Newsletter, Winter/ Spring 1984. Advocates for the handicapped view the lives of children with moderate to severe handicaps such as Down's Syndrome as inherently valuable to the children because they easily pass a human threshold test of capacity for self-awareness, cognition, ability to feel pleasure and give joy, etc. Moreover, advocates see the children's lives as beneficial to society since they promote societal acceptance of diversity, encourage societal caring, and provide opportunities, through study, to enhance societal understanding of learning processes and of cognition generally.

35 The 1973 decision in Roe v. Wade, 410 U.S. 113 (1973), upholding a pregnant woman's right to choose to abort her fetus rather than carry it to term, was a serious disappointment to pro-life advocates, as were subsequent Supreme Court decisions continuing to uphold Roe against various state attempts to limit the scope of its holding. See infra note 131.

36 For the flavor of pro-life arguments, see Special Supplement: One Year After ‘Infant Doe', National Right to Life News (1983) (published by The National Right to Life Committee).

37 48 Fed. Reg. 9630 (1983) (interim final rule modifying 45 C.F.R. 84.61) (invalidated by American Academy of Pediatrics v. Heckler, 561 F. Supp. 395 (D.D.C. 1983)).

38 Id.

39 Id. The required notice read as follows:

Discriminatory Failure to Feed and Care for Handicapped Infants in this Facility is Prohibited by Federal Law.

Section 504 of the Rehabilitation Act of 1973 states that “no otherwise qualified handicapped individual shall, solely by reason of handicap, be excluded from participation in, be denied the benefit of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”

Any person having knowledge that a handicapped infant is being discriminatorily denied food or customary medical care should immediately contact:

Handicapped Infant Hotline

U.S. Department of Health and Human Services

Washington, D.C. 20201

Phone 800- - (Available 24 hours a day)

or

Your State Child Protective Agency

Federal law prohibits retaliation or intimidation against any person who provides information about possible violations of the Rehabilitation Act of 1973. Identity of callers will be held confidential. Failure to feed and care for infants may also violate the criminal and civil laws of your State. 48 Fed. Reg. 9630, 9631-32 (1983).

40 American Academy of Pediatrics v. Heckler, 561 F. Supp. 395 (D.D.C. 1983).

41 Id. at 396.

42 Id. at 399-400. The relevant concerns that the court said were ignored were: (1) consideration of the disruptive effects of a hotline on hospital treatment of newborns; (2) weighing of such risks as malpractice and disciplinary actions against the doctors and hospitals caught between the requirements of the regulation and established legal aid and ethical guidelines, possible forced removal of the child from the hospital, and termination of federal assistance to the hospital as a whole; (3) consideration of the advantages and disadvantages of relying on parental preferences; (4) consideration of whether withholding treatment might be appropriate where treatment would be futile; and (5) consideration of alternative means of protecting handicapped infants.

43 Id. at 399-401.

44 Id. at 402-03.

45 48 Fed. Reg. 30846 (1983).

46 See 49 Fed. Reg. 1622, 1623 (1984). Although associations representing the handicapped and their parents were overwhelming supporters of the proposed regulations, most pediatricians and newborn care specialists, hospital officials, and health-related associations opposed them.

47 49 Fed. Reg. 1622 (1984).

48 See President's Commission For the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions 197-229 (1983).

49 Fed. Reg. 1651 (1984) (codified at 45 C.F.R. § 84.55) (invalidated in part by Bowen v. American Hosp. Ass'n, 106 S. Ct. 2101 (1986)); see also 49 Fed. Reg. at 1623-25.

50 Id. at 1651.

51 Id.

52 The language of the notice required by the interim final rule, supra note 37, and by the proposed final regulations, supra note 45, was thought by many to be unduly provocative. It stated in bold type: Discriminatory Failure to Feed and Care For Handicapped Infants in this Facility is Prohibited by Federal Law. It went on to say, among other things, “Failure to feed and care for infants may also violate the criminal and civil laws of your State.” See supra note 39 for the full text of this notice.

53 The required notice for those hospitals not having nondiscriminatory policies already in place read as follows:

49 Fed. Reg. 1622, 1651 (1984).

54 Id. at 1651.

55 49 Fed. Reg. 1622, 1651 (1984).

56 Id. at 1651-54.

57 Id. at 1630.

58 Id.

59 Id. at 1642.

60 Id.

61 The regulations prohibited retaliation by hospitals “against any person who provides information about possible violations.” (emphasis added). 49 Fed. Reg. 1622, 1651 (1984). Failure to limit the protection to good-faith informants caused concern among hospital staffs. Hospital administrators worried that uninformed persons, operating from an excess of zeal to protect life at all cost without regard to individual circumstances, might bring suits merely to harass or to pressure the hospital into changing its policies across the board. See id. at 1622.

62 Reporting parental nonconsent would be a defensive measure to protect hospitals from the new section 504 liability and from state neglect law liability. See id. 49 Fed. Reg. at 1630 (states generally require hospitals to report or seek judicial review of suspected neglect).

63 The “Principles” were jointly announced on November 29, 1983. The other signers were the Association for Retarded Citizens, the Association for the Severely Handicapped, the American Association on Mental Deficiency, the American Coalition of Citizens with Disabilities, the American Association of University Affiliated Programs for the Developmentally Disabled, the Spina Bifida Association of America, and the Down's Syndrome Congress.

64 See portions reprinted in 49 Fed. Reg. at 1630 (1984).

65 See Medical Disability Groups Agree on Principles of Care for Disabled Newborns, Education of the Handicapped, December 14, 1983 (published by Capitol Publications).

66 The AMA, the largest organization of physicians in the country, is an active and powerful lobby in Washington, D.C.; because of its political influence on medical matters, its absence from the list of signers was significant. Also significant was its opposition (reported in 42 Cong. Q. 1796 (1984)) to the compromise reached on the federal Child Abuse Amendments of 1984 because the Amendments failed to address the quality of life issue. See the discussion of the Child Abuse Amendments in the text at page 26.

67 The most complete description of the infant's condition at birth was provided in Weber v. Stony Brook Hosp., see infra note 68. For examples of the press coverage in one major newspaper, see Margolick, Battle for ‘Baby Doe', N.Y. Times, Oct. 25, 1983, at Bl, col. 5; Chambers, Parents of ‘Baby Doe’ Criticize ‘Intrusion’ by U.S., N.Y. Times, Nov. 6, 1983, at L45, col. 2; Bird, U.S. Role in ‘Baby Doe’ Case Defended by Surgeon General, N.Y. Times, Nov. 7, 1983, at B4, col. 3; Chambers, A Legal Knot in Baby Case, N.Y. Times, Nov. 8, 1983, at Bl, col. 5;Baby Jane's ‘Defender', N.Y. Times, Nov. 11, 1983, at A30, col. 1; Chambers, Specialists Debate the Issues in Baby Doe Case, N.Y. Times, Dec. 11, 1983, § 1, at 63, col. 1; Chambers, Baby Doe: Hard Case for Parents and Courts, N.Y. Times, Jan. 8, 1984, § 21, at 1, col. 1. The infant referred to in these accounts became known as “Baby Jane Doe” to distinguish her from the Bloomington, Indiana infant referred to as “Baby Doe.“

68 Weber v. Stony Brook Hosp., 60 N.Y.2d 208,456 N.E.2d 1186, 469 N.Y.S.2d 63 (1983) (per curiam), cert, denied, 464 U.S. 1026 (1983). The court concluded that the plaintiff should have invoked the procedures available under the N.Y. Family Court Act and that his failure to employ them precluded his right to bring an action on his own. The various lower state court proceedings are described in United States v. University Hosp., 575 F. Supp. 607 (E.D.N.Y. 1983).

69 The Justice Department invoked (1) its general authority to enforce § 504 and (2) 45 C.F.R. § 84.61 (1985), a broad regulatory provision authorizing access to information needed to ascertain compliance with § 504. University Hospital, 575 F. Supp. at 609.

70 575 F. Supp. 607 (E.D.N.Y. 1983).

71 Id. at 614-15.

72 It is not discrimination under section 504 for an otherwise qualified handicapped individual to be denied the benefits of a program or activity receiving federal financial assistance provided the denial is not based “solely” on the handicap. See the actual language of section 504 in the text at page 6.

73 University Hospital, 575 F. Supp. at 615. The judge also observed that the New York State Child Protective Service had investigated the situation and had concluded that there was no cause for state intervention in the parental-hospital decision. For a sample of the newspaper and magazine coverage, see Van den Haag & Washington, BabyJaneDoe, Nat'L Rev., Feb. 10, 1984,at 36; Beck,Lei Parents, Doctor Decide Fate of''Baby Jane Doe', Salt Lake Tribune, Nov. 12, 1983, at A15. See also note 67 supra.

75 Bird, U.S. Role in ‘Baby Doe’ Case Defended by Surgeon General, N.Y. Times, Nov. 7, 1983, at B4, col. 3.

76 729 F.2d 144 (2d Cir. 1984).

77 Id. at 156.

78 Id. at 157.

79 The court found no evidence of Congressional intent to involve the federal government in medical treatment decisions and, in fact, found evidence to the contrary in the Medicare law and the provisions of the Social Security Act establishing medical Professional Standards Review Organizations. The court also cited evidence that Congress traditionally had left child care issues to the states. In addition, the court noted that previous Supreme Court decisions had indicated that § 504 did not impose affirmative action duties upon recipients of federal funds, such as would exist were hospitals required either to undertake surgery in spite of parental objections or to petition the state court to intervene on the child's behalf. Id. at 160.

80 University Hospital, 729 F.2d at 161.

81 585 F. Supp. 541 (S.D.N.Y. 1984).

82 729 F.2d at 144.

83 No. 84-6211 (2d Cir. Dec. 27, 1984) (unpublished opinion affirming the lower court decision).

84 Cert, granted, 53 U.S.L.W. 3881 (U.S.June 17, 1985) (No. 84-1529).

85 Heckler v. American Hosp. Ass'n was renamed Bowen v. American Hosp. Ass'n, reflecting the change in command at HHS between the time certiorari was granted and the date of the decision.

86 Bowen v. American Hosp. Ass'n, 106 S. Ct. 2101 (1986).

87 Chief Justice Burger concurred in the plurality opinion without comment. Justice Rehnqr.ist did not participate.

88 American Hospital Ass'n, 106 S. Ct. at 2111.

89 See the district court decision in American Hospital Ass'n, 585 F. Supp. at 542; see also University Hospital, 729 F.2d at 161. A vigorous dissent by Justice White, joined by Justices O'Connor and Brennan, insisted that the issue originally presented by University Hospital had not been so narrowed by the follow-up district court decision in American Hospital Ass'n, 106 S. Ct. at 2124-32 (White, J., dissenting).

90 575 F. Supp. 607 (E.D.N.Y. 1983).

91 American Hospital Ass'n, 106 S. Ct. at 2114.

92 Id. at 2118.

93 In footnote 23 of its decision, the Court observed that:

106 S. Ct. at 2118 n.23.

94 442 U.S. 397,411 (1979) (holding that § 504 created no affirmative action requirements by recipients of federal funds).

95 The Court noted that the Final Rules impermissibly imposed an “absolute obligation on state agencies to make services—i.e., a complaint handling process—available to handicapped infants [that] are in no way tied to the level of services provided to similarly situated nonhandicapped infants.” 106 S. Ct. at 2120. By so doing, the Final Rules created an absolute right to the services, contradicting the purpose of § 504, which even the Solicitor General conceded “is essentially concerned only with discrimination in the relative treatment of handicapped and nonhandicapped persons and does not confer any absolute right to receive particular services or benefits under federally assisted programs.” Id. (emphasis in original) (quoting from Brief for Petitioner at 40, n.33).

96 American Hospital Ass'n, 106 S. Ct. at 2122 (emphasis in original).

97 Id. at 2123.

98 See American Hospital Ass'n, 106 S. Ct. at 2115.

99 Id. at 2117 n.22.

100 Id. at 2113.

101 Id. at 2113 n.13. The Court noted with approval the summary of the state law framework provided by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. The summary noted that “traditional law concerning the family, buttressed by the emerging constitutional right of privacy, protects a substantial range of discretion for parents.” Id.

102 For a discussion of the Congressional compromise, see Ken, Negotiating the Compromises, 15 Hastings Center Rep. June, 1985, at 6.

103 Child Abuse Amendments of 1984, Pub. L. 98-457, 98 Stat. 1749 (1984) (codified as amended in scattered sections of 42 U.S.C.).

104 Id.

105 “ lnfant” is defined as a child under the age of one year. Child Abuse and Neglect Prevention and Treatment Program, 45 C.F.R. § 1340.15(3)(b)(2)(i) (1985).

106 42 U.S.C. § 5102(B)(3) (1982 & Supp. Ill 1985).

107 Id.

108 See 42 U.S.C. § 5103(b)(2)(K) (1982 & Supp. Ill 1985).

109 45 C.F.R. § 1340.15 (1986).

110 Id.

111 Interestingly, Indiana is one of the states that has not applied for funds under the disabled infant provisions of the Child Abuse Amendments of 1984. See infra note 114.

112 45 C.F.R. § 1340.15 (1986).

113 42 U.S.C. § 5103(b)(2)(K) (1982 & Supp. Ill 1985).

114 Ten states did not apply for FY 86 funds under the disabled infant provisions of the Child Abuse Amendments of 1984: California, Indiana, Pennsylvania, Delaware, Idaho, Maine, Missouri, South Dakota, Vermont, and West Virginia. State Grant Summaries, Dec. 1986, Prepared by the Clearinghouse on Child Abuse and Neglect for the U.S. Dep't of Health and Human Servs., Office of Human Dev. Servs., Admin, for Children, Youth, and Families; Children's Bureau, Nat'l Center for Child Abuse and Neglect.

115 See Comment on Child Abuse and Neglect Prevention and Treatment Program, 50 Fed. Reg. 14883 (1985).

116 Earlier examples of state court decisions ordering surgery over parental objections include/n re Cicero, 101 Misc. 2d 699, 421 N.Y.S.2d 965 (Bronx County Sup. Ct. 1979) (where the court ordered surgery on a spina bifida infant) and Maine Medical Center v. Houle, No. 74-145 (Sup. Ct. Me., February 14, 1974) (unreported) (where the court ordered surgery on a severely deformed and disabled infant but the infant died the day after the surgery).

117 The Court in American Hospital Ass'n observed that:

106 S. Ct. at 2121-22.

118 For a summary of the common law in this regard, see Gostin, A Moment in Human Development: Legal Protection, Ethical Standards and Social Policy on the Selective Non-Treatment of Handicapped Neonates, 11 AM. J.L. & MED. 31, 53-55 (1985).

119 The best known decision using a “substituted judgment” analysis is In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1975), cert, denied, 429 U.S. 922 (1976) (allowing father, with the concurrence of the attending physician, to exercise substituted judgment for his incompetent 22 year-old daughter and withdraw her life-support mechanisms, due to her chronic vegetative state). Nevertheless, the Quinlan court held that similar future decisions must be passed upon by a hospital ethics committee or like body, and that before the decision may be made to terminate the use of life support systems, there must be no possibility of the patient ever recovering consciousness. Id. at 669.

In the context of medical decision-making for children, a “substituted judgment” approach seems to recognize the child's right to refuse life-prolonging treatment, while, by contrast, a “best interest” analysis usually presumes that the child's best interest is in the continuation of its life. For a comparison of the substituted judgment and best interest doctrines, see Comment, Withholding Treatment from Seriously Ill and Handicapped Infants: Who Should Make the Decision and How?—An Analysis of the Government's Response, 33 DEPAUL L. REV. 495, 518-32 (1984).

120 As of 1984, only Oklahoma and Indiana had enacted their own Baby Doe statutes. Neither statute anticipated the language of the federal reporting standard. Each required comparison of a decision to withhold treatment with decisions to treat either “similarly situated nonhandicapped or handicapped children.” See Clearinghouse on Child Abuse and Neglect, State Child Abuse and Neglect Statutes: a Comparative Analysis 1984 88-89 (1985).

121 Supplementary Information, 48 Fed. Reg. 9630 (1983).

122 For a pediatric view of the relevance of such factors as family burdens and the infant's prognosis and quality of life, see Duff, & Campbell, , On Deciding the Case of Severely Handicapped or Dying Persons: With Particular Reference to Infants, 57 Pediatrics 487 (1976)Google ScholarPubMed.

123 See supra note 75.

124 Surgeon General Speaks on Life and Death, Newsletter of TASH: The Association For Persons With Severe Handicaps, Feb. 1984, at 1.

125 Here the distinction is between active euthanasia (mercy killings) and passive euthanasia (termination of life-support systems). As of June, 1986, 38 states had statutes recognizing the validity of “Living Wills,” documents in which patients authorize termination of life-support systems in advance of situations where an irreversible and fatal condition exists and they are unable to indicate their wishes. See Concern for Dying Newsletter, Spring, 1986, at 8. For court cases condoning the termination of life-support systems, see In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976), and Brophy v. New England Sinai Hosp., 398 Mass. 417, 497 N.E.2d 626 (1986).

126 Roe v. Wade, 410 U.S. 113 (1973) (constitutional right to privacy protects decision to have abortion during first trimester).

127 Recall the Declaration of Independence and the fifth and fourteenth amendments to the U.S. Constitution. While the pursuit of happiness is not a legal right per se, it is deeply embedded in the American psyche and helps to justify our belief in the value of liberty.

128 Pierce v. Society of Sisters, 268 U.S. 510 (1925) (education statute barring parents from sending children to private schools deprived these schools of property without due process of law and also interfered with rights of parents to direct upbringing of children); Meyer v. Nebraska, 262 U.S. 390 (1923) (application of statute prohibiting instruction in German before 9th grade invalidated under liberty clause of fourteenth amendment).

129 Parham v. J.R., 442 U.S. 584 (1979) (parents allowed to commit adolescent to mental institution without formal adversary proceeding; independent medical concurrence judged sufficient to protect the child's due process rights and minimize the risk of parental error).

130 Zablocki v. Redhail, 434 U.S. 374 (1978) (court approval not required prior to marriage by those under court order to support children not in their custody); see also Loving v. Virginia, 388 U.S. 1 (1967) (Virginia's miscegenation statute held unconstitutional).

131 Roe v. Wade, 410 U.S. 113 (1973), and its aftermath, e.g., Planned Parenthood of Mo. v. Danforth, 428 U.S. 52 (1976) (invalidating statute limiting right of unmarried women under 18 to abortion by requiring spousal or parental consent); Carey v. Population Servs. Int'l, 431 U.S. 678 (1977) (invalidating various restrictions on distribution and advertising of nonprescription contraceptives). See also Eisenstadt v. Baird, 405 U.S. 438 (1972) (constitutional privacy rights protect single person's use of contraceptives); Griswold v. Connecticut, 381 U.S. 479 (1965) (constitutional privacy rights protect married couples’ use of contraceptives); Skinner v. Oklahoma, 316 U.S. 535 (1942) (statute compelling sterilization after third felony conviction involving moral turpitude held unconstitutional).

132 See, e.g., Doe v. Commonwealth's Attorney, 425 U.S. 901 (1976) (affirming a federal court dismissal of a challenge by male homosexuals to Virginia's sodomy law). See also Bowers v. Hardwick, 106 S. Ct. 2841 (1986) (upholding the Georgia statute outlawing consensual sodomy).

133 See, e.g., Custody of a Minor, 375 Mass. 733, 379 N.E.2d 1053 (1978),aff'd, 378 Mass. 732, 393 N.E.2d 836 (1979) (parents ordered to allow radiation and chemotheraphy for leukemic son). The child treatment cases deserve closer examination to differentiate them from those of handicapped infants, but this exceeds the scope of this Article. A key question is whether or not the two sets of children are similarly situated with respect to the treatment— will the treatment outcomes be similarly favorable, or is a particular handicapping condition a morally relevant basis for treatment denial?

134 The Comments stated that any negative effects of the child's life on other persons were to be excluded from consideration in a decision to withhold treatment. See supra note 47, at 1630; see also Comment, supra note 119 (arguing that, under the federal rules, a “best interest” analysis, rather than either a “substituted judgment” or a “Hofbauer” [reasonable medical alternatives] analysis, is required. The Comment concludes that, under the rules, an infant's best interest is always defined as treatment and that the state's interest rather than that of the parents prevails.)

135 See supra note 47, at 1630, and note 109.

136 The terms “a dying life” and “a living life” are my own, used to highlight the paradox inherent in the Administration position that (1) subjective notions of quality of life are irrelevant to decisions to treat or not treat, and yet, (2) an infant who is already dying need not be treated. It is my view that such a position is internally inconsistent.

137 For a similar assessment of the underlying values reflected in the Baby Doe regulations, see Singer & Kuhse, The Future of Baby Doe, N.Y. Rev. of Books, March 1, 1984, at 17.

138 50 Fed. Reg. 14880 (1985). For a parental description of an unreasonable medical judgment resulting in the prolongation of dying, see R. Stinson & P. Stinson, the Long Dying of Baby Andrew (1983).

139 50 Fed. Reg. 14883, 14890-91 (1985). The interpretive guidelines that follow the final rule explain HHS's interpretation of key phrases in the statutory language. The Department interprets Congressional intent “as not permitting the ‘merely prolong dying’ provision to apply where many years of life will result from the provision of treatment, or where the prognosis is not for death in the near future but rather the more distant future.” Id.

140 See supra note 134 and accompanying text.

141 Robertson, supra note 3, argued that adults should not presume that a handicapped infant would not value mere life qua life as in its best interests. In contrast, the concept of substituted judgment would allow an adult to presume that if a handicapped newborn possessed minimal attributes of rationality, it might choose death over life. Of course, since its very lack of those minimal attributes of rationality is what necessitates the substitute judgment, the paradox in the presumption is apparent. See, e.g., the reasoning in Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977). John Arras in Toward an Ethic of Ambiguity, 14 Hastings Center Rep. 25 (1984)CrossRefGoogle Scholar, suggests that neither a best interest analysis nor a substituted judgment analysis serves as a complete basis for just and moral decision-making. He argues that “the absence of fundamental human capacities can render a life valueless, both to its possessor and others” and that a threshold judgment regarding meaningful human life, although difficult and susceptible of abuse, should become part of the equation. Rather than searching for “secret preferences of patients lacking the capacity for self-knowledge and human relations,” decision-makers should designate a threshold of meaningful human life. If it is not reached, the duty to sustain life would lose its moral hold on caregivers. Arras, supra, at 32.

142 Murray, The Final, Anticlimatic Rule on Baby Doe, 15 Hastings Center Rep., June, 1985, at 5.

143 The best interest standard is the one traditionally used in custody battles between parents; what is in the best interest of the child governs the outcome. As Murray suggests, the best interest standard has been extended frequently in recent years to cover medical treatment issues affecting handicapped infants. Id.

144 Kant's extensive writings are difficult to read, even in translation. For an overview of his moral and political writings, see C. Friedrich, the Philosophy of Kant (1949). For a brief account of Kant's views of the moral imperative, see M. Shapiro & R. Spece, Bioethics and Law 85-87 (1981).

145 Of course, the present health-care system cannot realize such an ideal, except piecemeal, and is influenced by the ability of a patient to pay for certain kinds of treatment, the availability of personnel and resources, and covert judgments of patient worth. For a good discussion of health care rights, see Brown, , The Scope and Limits of Equality as a Normative Guide to Federal Health Care Policy, 26 PUBLIC POLICY 481 (1978)Google Scholar.

146 See J.S. MILL, Utilitarianism (1863).

147 See J. Bentham, Principles of Morals and Legislation (1789).

148 Sec H. Sidgwick, the Methods of Ethics (7th ed. 1907). For various modern interpretative critiques of utilitarianism, see H. Miller & W. Williams, the Limits of Utilitarianism (1982), A. Quinton, Utilitarian Ethics (1973), Contemporary Utilitarianism (M. Bayles ed. 1968) and D. Lyons, Forms and Limits of Utilitarianism (1965).

149 The criminal codes of the various states provide one illustration of our commitment to preserve the individual even at the expense of the many. Conviction of a crime requires proof beyond a reasonable doubt, and we have adopted the belief that “it is far worse to convict an innocent man than to let a guilty man go free.” In re Winship, 397 U.S. 358, 372 (1970) (Harlan, J., concurring). That convicted criminals are allowed numerous appeals is additional evidence of our commitment to preserve the rights of those judged guilty, even at great financial expense to society.

150 See J. Rawls, A Theory of Justice (1971). For commentary on the views of Rawls, see N. Daniels, Reading Rawls (1975) and John Rawls’ Theory Of Social Justice (H. Blocker & E. Smith eds. 1980).

151 Rawls’ so-called “original position.” See J. Rawls, supra note 150, at 17-22, 118-192.

152 See, e.g., Franz, Infanticide in Animals and Humans, The National Right to Life News, supra note 36, at 13.

153 Presentation by Peter Singer on Ethical Issues in the Treatment of Newborn Handicapped Infants, Philosophy Colloquium, University of Utah, February 17, 1984.

154 Id.

155 Minow, , Beyond State Intervention in the Family: For Baby Jane Doe, 18 U. Mich. J.L. Reform 933 (1985)Google Scholar.

156 The recent enactment of Pub. L. No. 99-457, 100 Stat. 1145 (Oct. 8, 1986) to authorize subsidies for state early intervention programs for handicapped infants and toddlers is viewed by many as a step in the right direction. 157 Many persons offer more affection, care, and training to their pets than the state offers to profoundly handicapped children. Of course, some of us are not particularly conscientious about the care given to animals, either. Society generally has assumed that animals, as nonhuman species, have an inferior claim to various rights bestowed on persons. For a contrary view, see P. Singer, Animal Liberation (1977).

158 There are already approximately 90,000 amniocenteses performed every year to detect genetic abnormalities such as Down's Syndrome. According to Murray, supra note 142, 500-800 abortions of Down's Syndrome fetuses are estimated to result each year.

159 410 U.S. 113 (1973).

160 The patient must await 16-18 weeks gestation before amniocentesis can be performed with accuracy and relative safety. See Turnbull, Amniocentesis, Antenatal and Neonatal Screening 445-55 (Wald, ed. 1984).