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The Genetics of Secrecy in Adoption, Artificial Insemination, and In Vitro Fertilization

Published online by Cambridge University Press:  24 February 2021

Ann T. Lamport
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Abstract

In light of the significant role that heredity plays in many disease processes, statutes requiring strict secrecy with regard to medical records in cases of adoption, artificial insemination and in vitro fertilization should be reassessed. In adoption cases, attitudes concerning the adoptee’s ancestry have progressed over the century, but adoptees still are unable to access their records. The problem of inaccessibility is also apparent in medical genetics clinics where valuable genetic information, necessary for an accurate diagnosis, is unavailable to the clinic, the adoptive parents, and the birth parents.

A uniform law which responds to these interests and problems should be promulgated. This Note discusses the need for better access to and availability of medical records. The Note proposes a Uniform Act and suggests that, at a minimum, it include a scheme for regulating the donation of genetic material, strong record-keeping requirements with respect to family histories and pedigrees, and finally, an open access provision for certain information for both children and parents.

Type
Notes and Comments
Information
American Journal of Law & Medicine , Volume 14 , Issue 1 , 1988 , pp. 109 - 124
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1988

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References

1 Howe, , Adoption Practice, Issues, and Laws 1958-1983, 17 FAM. L.Q. 173, 173 n.2 (1983)Google Scholar(citing CODE OF HAMMURABI §§ 185-86) (2285 B.C.).

2 MASS. GEN. L. ch. 324, § § 1 , 4 (1851); Howe, supra note 1, at 175. Prior to the passage of this statute which renders adoptions public through a judicially supervised process, adoption was a private legal act akin to property conveyances.

3 Id at 176-77.

4 Id. at 176 (quoting Witmer, The Purpose of American Adoption Laws, in H. WITMER, E. HERZOG, E. WEINSTEIN & M. SULLIVAN, INDEPENDENT ADOPTIONS: A FOLLOW-UP STUDY 31 (1963)).

5 A. SOROSKY, A. BARAN & R. PANNOR, THE ADOPTION TRIANGLE: THE EFFECTS OF THE SEALED RECORD ON ADOPTEES, BIRTH PARENTS AND ADOPTIVE PARENTS 15 (1978); see also Johnson, Adoption: The Truth Can Hurt, N.Y. Times, May 14, 1984, § 2, at 14, col. 1.

6 Cf. Bonham, , Who Adopts: The Relationship of Adoption and Social Demographic Characteristics of Women, 39 J. MARRIAGE 295, 301 (1977)CrossRefGoogle Scholar; Klemesrud, Number of Single-Parent Adoptions Grow, N.Y. Times, Nov. 19, 1984, § 3, at 13, col. 4 (it is suggested that there now is an increasing trend of unwed mothers adopting children).

7 Note, The Adoptee's Right to Know His Natural Heritage, 10 N.Y.L.F. 137, 137 (1973) (citing forty-six states but since that time Rhode Island amended its laws). The following states currently provide for access to all records at the age of majority: ALA. CODE § 26-10-4 (1986); CONN. GEN. STAT. § 45-68i (1981); KAN. STAT. ANN. § 65-2423 (1985); R.I. GEN. LAWS § 23-3- 23 (1985); VA. CODE ANN. § 63.1-236 (1980).

8 Matchan, Exploring Some Myths Surrounding the Adoption Triangle, Boston Globe, Mar. 23, 1986, at 80, col. 1.

9 See, e.g., id.; Raphael, , Act of Adopting Brings Obsession and Fear, N.Y. Times, Mar. 29, 1987Google Scholar, § 23, at 34, col. 1.

10 J. HOOPES, E. SHERMAN, E. LAWDER, R. ANDREWS & K. LOWER, A FOLLOWUP STUDY OF ADOPTIONS (VOL. II): POST-PLACEMENT FUNCTIONING OF ADOPTED CHILDREN (1970); B. JAFFE & D. FANSHEL, HOW THEV FARED IN ADOPTION: A FOLLOW-UP STUDY 196-220 (1970); C. JEWETT, ADOPTING THE OLDER CHILD 285-89 (1978); L. RAYMOND, ADOPTION … AND AFTER (1955); J. ROWE, YOURS BY CHOICE 143-48 (1969).

11 Matchan, supra note 8, at 80, col. 1; Matchan, Attacking the Adoption Barrier, Boston Globe, Mar. 23, 1986, at 77, col. 1; Bartlett, Adult Adoptees Demand to Know “Who Am I?” L.A. Times, Sept. 15, 1974, § I at 1, col. 4.

12 American Academy of Pediatrics, Comm. on Adoptions, Identity Development in Adopted Children, 47 PEDIATRICS 948, 948-49 (1971).

13 Howe, supra note 1, at 191.

14 Bartlett, supra note 11, § 1 at 8, col. 2.

15 Id.; Note, supra note 7, at 137. Local groupNs, such as the Adoption Connection in Peabody, Massachusetts, also are actively assisting both adoptees and birth parents to find each other. Matchan, supra note 8, Boston Globe, Mar. 23, 1986, at 80, col. 4; see also Johnson, , supra note 5, § 2, at 14.Google Scholar

16 See generally Howe, supra note 1; Note, The Adult Adoptee's Constitutional Right to Know His Origins, 48 S. CAL. L. REV. 1196 (1975); Note, supra note 7.

17 A., SOROSKY, A., BARAN & R., PANNOR, supra note 5, at 19.Google Scholar

18 Id.

19 W. ROACH, S. CHERNOFF & C. ESLEY, MEDICAL RECORDS AND THE LAW 58 (1985).

20 Id. at 49-50.

21 Howe, supra note 1, at 190; COLO. REV. STAT. §§ 19-4-121, 19-5-215 (1987) (interested party can inspect upon showing good cause); GA. CODE ANN. § 19-8-18 (1988)(release only after court order); MICH. COMP. LAWS ANN. § 710.67 (WEST 1988); MONT. CODE ANN. § 50-15- 304 (1987)(release only after court order); see D.C. CODE § 16-311 (1981)(when child's welfare is at stake will release after court order); N.C. GEN. STAT. § 48-26 (1987)(release only after court order that it is in the best interest of child); TENN. CODE ANN. § 36-131 (1988)(only after court order that it is in the best interests of the child).

22 57 A.D.2d 618, 393 N.Y.S.2d 768 (1977).

23 Id. at 619, 393 N.Y.S.2d at 768; see Prentice v. Parker, 376 So. 2d 568 (La. Ct. App. 1979)(demonstration of compelling necessity, examples); Kirsch v. Parker, 375 So. 2d 693 (La. Ct. App. 1979); In re Application of Sage, 21 Wash. App. 803, 586 P.2d 1201 (1978).

24 21 Wash. App. 803, 586 P.2d 1201 (1978).

25 See, e.g., A., SOROSKY A., BARAN & R., PANNOR, supra note 5, at 126-29.Google Scholar

26 Bartlett, supra note 11, § 1, at 9, col. 3.

27 A. SOROSKY, A. BARAN & R. PANNOR, supra note 5, at 36, 114. For additional letters from concerned birth parents, see Baran, Pannor & Sorosky, The Lingering Pain of Surrendering a Child, 11 PSYCHOLOGY TODAY 58, (JUNE 1977); PANNOR, BARAN & SOROSKY, Attitudes of Birth Parents, Adoptive Parents and Adoptees toward the Sealed Adoption Record, 19 J. ONTARIO A. CHILDREN's AID SOC'Y 1 (1976); PANNOR, BARAN & SOROSKY, Birth Parents Who Relinquished Babies for Adoption Revisited (paper presented at the annual meeting of American Psychological Ass'n, Washington, D.C. (1976)); Pannor, Sorosky & Baran, Opening the Sealed Record in Adoption: The Human Meed for Continuity, 51 J. JEWISH COMMUNAL SERV. 188 (1974); BARAN, PANNOR & SOROSKY, Adoptive Parents and the Sealed Records Controversy, 55 Soc. CASEWORK 531 (1974).

28 A. SOROSKY, A. BARAN & R. PANNOR, supra note 5, at 51.

29 The patient was examined by this author, Medical Genetics Clinic, Riley Hospital for Children, in Indianapolis, Ind. (June 11, 1984).

30 See also Lowry, , Hill, & Tischler, , Survival and Spectrum of Anomalies in the Meckel Syndrome, 14 AM. J. MED. GENETICS 417, 421 (1983)CrossRefGoogle ScholarPubMed(varying expressivity in siblings with lethal syndrome).

31 Hall, , Children of Incest: When to Suspect and How to Evaluate﹜, 13 AM. J. DISEASES CHILDREN 1045 (1978).Google Scholar

32 Definitions of these medical terms are as follows: Homocystinuria - a congenital metabolic disorder resulting in an excess of the amino acid homocystine in the blood and urine. This leads to mental retardation and skeletal defects if untreated. Cystic Fibrosis - a congenital disease of the mucous glands resulting in overproduction of mucous, which is expressed primarily in early childhood, and causes pancreatic insufficiency, lung disorders, and may lead to early death. Retinitis Pigmentosa - a congenital defect of the retina of the eye which may lead to blindness. Congenital malformation - structural defects present at birth such as Polydactyly (less than five fingers on a hand), club foot, cleft lip, cryptorchidism (incomplete external development of the sex organs), heart defects, etc.

For an indepth discussion of congenital problems and their effects, see Baird, & McGillivray, , Children of Incest, 101 J. PEDIATRICS 854 (1982)CrossRefGoogle ScholarPubMed; Seemanova, , A Study of Children of Incestuous Matings, 21 HUMAN HEREDITY 108 (1971)CrossRefGoogle ScholarPubMed; Adams, & Neel, , Children of Incest, 40 PEDIATRICS 55 (1967)Google ScholarPubMed; Carter, , Risk to Offspring of Incest, 1 LANCET 436 (1967)CrossRefGoogle Scholar.

33 The patient was treated by this author in the Medical Genetics Clinic, Riley Hospital for Children in Indianapolis, Ind. (Mar. 23, .1984).

34 Wadlington, , Artificial Conception: The Challenge for Family Law, 69 VA. L. REV. 465, 466 (1983)CrossRefGoogle ScholarPubMed(citing U.S. BUREAU OF THE CENSUS, 1972 STATISTICAL ABSTRACT OF THE UNITED STATES 305 (1972)).

35 Id. at 467.

36 R. BLANK, REDEFINING HUMAN LIFE: REPRODUCTIVE TECHNOLOGIES AND SOCIAL POLICY 34 (1984).

37 Id. (citing Andrews, Embryo Technology, 56 PARENTS 63, 63-64 (1981).

38 Id. at 25-26.

39 Curie-Cohen, Luttrell & Shapiro, , Current Practice of Artificial Insemination by Donor in The United States, 300 NEW ENG. J. MED. 585, 585 (1979)Google Scholar(to date, this is the only study of its kind).

40 Id. at 588.

41 Id. at 589; Annas, , Fathers Anonymous: Beyond the Best Interests of the Sperm Donor, 14 FAM. L.Q. 1, 1 (1980).Google ScholarPubMed

42 See, e.g., Eisenman, Fathers, Biological and Anonymous, and Other Legal Strangers: Determination of Parentage and Artificial Insemination By Donor Under Ohio Law, 45 OHIO ST. L.J. 383 (1984)(discussion of parentage under Ohio law which is a modified version of the Uniform Parentage Act, but does not discuss issue of artificial insemination by donor).

43 Capron, The New Reproductive Possibilities: Seeking a Moral Basis for Concerted Action in a Pluralistic Society, 12 L., MED. & HEALTH CARE 192, 196 (1984).

44 Id. at 197.

45 Curie-Cohen, Luttrell & Shapiro, supra note 39, at 588.

46 Id. at 586.

47 Id. at 587.

48 Genetic Aspects of Artificial Insemination by Donor (AID): Indications, Surveillance and Results., 23 CLINICAL GENETICS 132, 135 (1983); ANNAS, , Fathers Anonymous: Beyond the Best Interests of the Sperm Donor, 14 FAM. L.Q. 1, 6–9 (1980);Google ScholarPubMed Fraser & Forse, , On Genetic Screening of Donors for Artificial Insemination, 10 AM. J. MED. GENETICS 399, 401-03 (1981).Google Scholar

49 Curie-Cohen, Luttrel & Shapiro, supra note 39, at 588.

50 Id. at 586.

51 Id. at 588.

52 Id. at 588.

53 A., SOROSKV, A., BARAN & R., PANNOR, supra note 5, at 124Google Scholar (citing letter from C. Means (1976))(mother of young man, who took his fiancee home to meet her, recognized the girl as her daughter).

54 Atallah, , Parent and Child: Report From a Test Tube Baby, N.Y. Times, Apr. 18, 1976Google Scholar (Magazine) at 16-17, 48-51.

55 Curie-Cohen, Luttrel & Shapiro, supra note 39, at 589 (citing W. FINEGOLD, ARTIFICIAL INSEMINATION (1964); Artificial Insemination Breeds Legal Issues, 10 U.S. MED. 3, 8 (1974)).

56 Curie-Cohen, Luttrel & Shapiro, supra note 39, at 589.

57 Id. at 587.

58 Id. at 589.

59 Federation CECOS, supra note 48, at 136-137; Fraser & Forse, supra note 48, at 400.

60 Fraser & Force, supra note 48, at 401-403; Curie-Cohen, Luttrel & Shapiro, supra note 39, at 588.

61 Capron, supra note 43, at 196-98; Fraser & Forse, supra note 48, at 401-04; Annas, supra note 48, at 12-13.

62 Annas, supra note 48, at 13.

63 See, e.g., Annas & Elias, In Vitro Fertilization and Embryo Transfer: Medicolegal Aspects of a New Technique to Create a Family, 17 FAM. L.Q. 199, 203 (1983-84) (provides an excellent summary of the IVF procedure).

64 An oocyte is an egg cell.

65 Id. at 215.

66 Protection of Human Subjects; HEW Support of Human in vitro and Embryo Transfer, 44 Fed. Reg. 35,033, 35,055 (1979).

67 Subcommittee on Investigations and Oversight of the Committee on Science and Technology.

68 Human Embryo Transfer: Hearing Before the Subcomm. on Investigations and Oversight of the House Comm. of Science and Technology, 98th Cong., 2nd Sess. 134 (1984) (Statement by Alexander M. Capron, former Exec. Dir. of President's Commission for the Study of Ethical Problems in Medicine and Biological Behavioral Research) [hereinafter Human Embryo Transfer]; see also Capron, supra note 43, at 198.

69 Capron, supra note 43, at 198.

70 Human Embryo Transfer, supra note 68, at 135.

71 Capron, supra note 43, at 196.

72 Krause, Uniform Parentage Act, 8 FAM. L.Q. 1, 8 (1974).

73 Id. at 16.

74 Howe, supra note 1, at 196-97 (emphasis in original).

75 See supra, note 11.

76 Atallah, supra note 54.

77 Wadlington, supra note 34, at 512 (emphasis in orginal).

78 Capron, supra note 43, at 198; Fraser & Forse, supra note 48, at 401-03.

79 Howe, supra note 1, at 194 n.80.

80 Note, supra note 18, at 1197.

81 Capron, supra note 43, at 196; Curie-Cohen, Luttrell & Shapiro, supra note 39, at 587.

82 Katz, Rewriting the Adoption Story, 5 FAM. ADVOCATE 9, 10 (1982).