Lethal Autonomy: The Malfunction of the Informed Consent Mechanism within the Context of Prenatal Diagnosis of Genetic Variants

Issues in Law and Medicine

Volumn 14, Issue 2, 1998, Pages 165-200

  Dunne, Cara ^a,b   Warren, Catherine ^b  

^a New England Retinoblastoma Fam F   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ABORTION; ARTICLE; ATTITUDE TO HEALTH; DECISION MAKING; FEMALE; GENETIC COUNSELING; GENETIC DISORDER; GENETICS AND REPRODUCTION; HISTORY; HUMAN; HUMAN GENOME PROJECT; HUMAN RELATION; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MEDICAL ETHICS; MEDICAL GENETICS; METHODOLOGY; PERSONAL AUTONOMY; POLITICAL SYSTEM; PREGNANCY; PROFESSIONAL PATIENT RELATIONSHIP; PSYCHOLOGICAL ASPECT; STANDARD; TWENTIETH CENTURY; UNITED STATES;

GENETICS AND REPRODUCTION; HUMAN GENOME PROJECT; PROFESSIONAL PATIENT RELATIONSHIP; TWENTIETH CENTURY;

ABORTION, EUGENIC; ATTITUDE TO HEALTH; DECISION MAKING; DISCLOSURE; ETHICS, MEDICAL; EUGENICS; FEMALE; GENETIC COUNSELING; GENETIC DISEASES, INBORN; HISTORY, 20TH CENTURY; HUMAN GENOME PROJECT; HUMANS; INFORMED CONSENT; NATIONAL SOCIALISM; PERSONAL AUTONOMY; PREGNANCY; PROFESSIONAL-PATIENT RELATIONS; UNITED STATES;

EID: 0032150254     PISSN: 87568160     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (82)

1. Telephone interview with an anonymous genetic counselor, New England Retinoblastoma Family Foundation, in Bow, N.H. (Feb. 28, 1994).
2. See Cara Dunne, Eye on Genetics, Newsletter of the New Eng. Retinoblastoma Fam. Found., Watertown, MA, July 1995 (summary of lecture by Ted Dryja, Ophthalmologist-Geneticist, Massachusetts Eye & Ear Infirmary, Boston, MA, July 20, 1993). Ted Dryja is an ophthalmologist-geneticist who traced and mapped the gene for retinoblastoma: a genetically-based form of retinal cancer that appears in young children. The discovery revolutionized the world of cancer genetics, since retinoblastoma is expressed with one genetic mutation, in this case, a partial deletion on chromosome thirteen which results in the absence of a tumor suppressor gene crucial to prevent the retinal malignancy from occurring should the other copy get lost. The majority of instances of this disease, sixty-five percent, are expressed due to sporadic mutations that bear negligible consequences for transmission to offspring. Where the germ line mutation occurs, malignancies will appear in both eyes and the gene will be transmitted to offspring as an autosomal dominant (fifty percent likelihood of passing it on).
3. The New England Retinoblastoma Family Foundation was organized in 1985 by Susan and Rusty Laventure as a means of bringing families and the medical community together in a mutual relationship of support and information-sharing. The group has expanded to include over five thousand families and individuals both nationally and throughout the world. New England Retinoblastoma Support Group, P.O. Box 317, Watertown, MA 02272-0317, (800) 562-6265, on web site http://laren.waisman.wisc.edu/fy/www/libreti.htm.
4. Sandra Anderson Garcia, Sociocultural and Legal Implications of Creating and Sustaining Life Through Biomedical Technology, 17 J. LEGAL MED. 469 (1996).
5. ANNE HODSON, ESSENTIAL GENETICS 108 (1994). Eugenics is the belief in or policy of attempting to improve the genetic quality of a human population. "'Negative eugenics' . . . aims at the eradication of 'bad' genes either by discouraging persons with presumed inferior genotypes from breeding or by eliminating such persons altogether." Id.
6. Garcia, supra note 4, at 469 (citation omitted).
7. See generally, GEORGE J. ANNAS, STANDARD OF CARE: THE LAW OF AMERICAN BIOETHICS 149 (1993).
8. E. Virginia Lapham et al., Genetic Discrimination: Perspectives Of Consumers, 274 SCIENCE 621 (1996).
9. Edward Harlow, a renowned scientist who revolutionized the understanding of genetically-based cancer through his contributions to the mapping of the retinoblastoma gene, accomplished much of his work at this institute during the early eighties.
10. Interview with John Ingalls, Director of Publishing at Cold Spring Harbor Medical Laboratories, in San Francisco, Cal. (Oct. 30, 1996). Mr. Ingall's exhibit of books and materials on the Laboratory's activities was one of several hundred exhibits at the conference. Biotechnology firms, molecular genetics and cytogenetics labs, genetic testing clinics and manufacturers of biotech software and instrumentation were abundantly represented, while genetically-based support groups were sparse and disability coalitions virtually nonexistent at the Conference.
11. GeneCare Medical Genetics Center, TAY SACHS Testing (pamphlet, 1996). Michael Kaybeck was instrumental in the development of a prenatal screening protocol for Tay Sachs. Tay Sachs is a neurodegenerative disorder in which a certain protein malfunctions and fails to code for an enzyme that prevents fat deposits in brain tissues. Mental retardation and early death are the most serious prognoses of this disease, which also manifests itself in an adult onset condition. One out of every four Ashkenazi Jews is a carrier for the recessive gene for Tay Sachs. Id. For more information contact the GeneCare Medical Genetics Center, 120 Conner Drive, Suite 201, Chapel Hill, NC 27515-4270; 800-277-4363.
12. Notes of Cara Dunne from the American College of Medical Genetics, Professional Practice & Guidelines Committee, at The American Society of Human Genetics, 46th Annual Meeting, San Francisco, Cal. (Oct. 29-Nov. 2, 1996).
13. PRESIDENT'S COMMISSION FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICINE AND BIOMEDICAL AND BEHAVIORAL RESEARCH, SCREENING AND COUNSELING FOR GENETIC CONDITIONS: THE ETHICAL, SOCIAL AND LEGAL IMPLICATIONS OF GENETIC SCREENING, COUNSELING, AND EDUCATION PROGRAMS 18 (1983) [hereinafter PRESIDENT'S COMMISSION].
14. Id. at 19.
15. Id.
16. Id.
17. Id.
18. Tucker Carlson, Eugenics, American Style: The Abortion of Down Syndrome Babies, WKLY. STANDARD, Dec. 2, 1996, at 20.
19. Interview with Michelle Fox, UCLA Prenatal Diagnostics and Medical Genetics Lab, in Los Angeles, Cal. (Nov. 8, 1996). See also, Why Women Have Abortions, FAMILY PLANNING PERSPECTIVES, July/Aug., 1988, at 170.
20. PRESIDENT'S COMMISSION, supra note 13.
21. Id.
22. ANNAS, supra note 7, at 156.
23. Americans with Disabilities Act of 1990, 42 U.S.C. § 12101-12213 (1994). The law prohibits discrimination in public and private employment settings, public accommodations and telecommunications, and extends the protection of the Rehabilitation Act of 1973, 29 U.S.C. § 701-797b (1994) under which only federally-funded employers were covered.
24. Garcia, supra note 4, at 511.
25. In re Infant Doe, No. GU-8204-004A (Monroe County Cir. Ct., Ind. Apr. 12, 1982), writ of mandamus dismissed sub. nom. State of Indiana ex rel. Infant Doe v. Monroe Circuit Court, No. 482 S 140 (Ind. May 27, 1982); see also Baby Jane Doe cases, Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 456 N.E.2d 1186, 469 N.Y.S.2d 63, cert, denied, 464 U.S. 1026 (1983); United States v. University Hosp., 575 F. Supp. 607 (E.D.N.Y. 1983), aff'd, 729 F.2d 144 (2d Cir. 1984). In Infant Doe, an infant with Down syndrome was allowed to starve to death over a six-day period of time. The lower court judge ruled in favor of the parents' decision to withhold feeding, and the child died before the hospital's appeal could be taken. The Doe case led to the formulation of the Baby Doe regulations, which, for a time during the eighties were mandatorily posted in all hospital nurseries as setting forth the reporting criterion for treatment-withholding cases. In Baby Jane Doe, a child with spina bifida, whose condition could have been alleviated to some degree through post-birth surgery, was allowed to go without surgical treatment in the hopes that she would soon die. The doctors prognosis of severe physical handicap and mental retardation influenced the parental decision to allow her to forgo surgical intervention. The child did not die, and functions on the level of a normal child, albeit with physical difficulties that could have been remedied with surgery at birth.
26. In re Infant Doe, No. GU-8204-004A (Monroe County Cir. Ct., Ind. Apr. 12, 1982), writ of mandamus dismissed sub. nom. State of Indiana ex rel. Infant Doe v. Monroe Circuit Court, No. 482 S 140 (Ind. May 27, 1982); see also Baby Jane Doe cases, Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 456 N.E.2d 1186, 469 N.Y.S.2d 63, cert, denied, 464 U.S. 1026 (1983); United States v. University Hosp., 575 F. Supp. 607 (E.D.N.Y. 1983), aff'd, 729 F.2d 144 (2d Cir. 1984). In Infant Doe, an infant with Down syndrome was allowed to starve to death over a six-day period of time. The lower court judge ruled in favor of the parents' decision to withhold feeding, and the child died before the hospital's appeal could be taken. The Doe case led to the formulation of the Baby Doe regulations, which, for a time during the eighties were mandatorily posted in all hospital nurseries as setting forth the reporting criterion for treatment-withholding cases. In Baby Jane Doe, a child with spina bifida, whose condition could have been alleviated to some degree through post-birth surgery, was allowed to go without surgical treatment in the hopes that she would soon die. The doctors prognosis of severe physical handicap and mental retardation influenced the parental decision to allow her to forgo surgical intervention. The child did not die, and functions on the level of a normal child, albeit with physical difficulties that could have been remedied with surgery at birth.
27. In re Infant Doe, No. GU-8204-004A (Monroe County Cir. Ct., Ind. Apr. 12, 1982), writ of mandamus dismissed sub. nom. State of Indiana ex rel. Infant Doe v. Monroe Circuit Court, No. 482 S 140 (Ind. May 27, 1982); see also Baby Jane Doe cases, Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 456 N.E.2d 1186, 469 N.Y.S.2d 63, cert, denied, 464 U.S. 1026 (1983); United States v. University Hosp., 575 F. Supp. 607 (E.D.N.Y. 1983), aff'd, 729 F.2d 144 (2d Cir. 1984). In Infant Doe, an infant with Down syndrome was allowed to starve to death over a six-day period of time. The lower court judge ruled in favor of the parents' decision to withhold feeding, and the child died before the hospital's appeal could be taken. The Doe case led to the formulation of the Baby Doe regulations, which, for a time during the eighties were mandatorily posted in all hospital nurseries as setting forth the reporting criterion for treatment-withholding cases. In Baby Jane Doe, a child with spina bifida, whose condition could have been alleviated to some degree through post-birth surgery, was allowed to go without surgical treatment in the hopes that she would soon die. The doctors prognosis of severe physical handicap and mental retardation influenced the parental decision to allow her to forgo surgical intervention. The child did not die, and functions on the level of a normal child, albeit with physical difficulties that could have been remedied with surgery at birth.
28. In re Infant Doe, No. GU-8204-004A (Monroe County Cir. Ct., Ind. Apr. 12, 1982), writ of mandamus dismissed sub. nom. State of Indiana ex rel. Infant Doe v. Monroe Circuit Court, No. 482 S 140 (Ind. May 27, 1982); see also Baby Jane Doe cases, Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 456 N.E.2d 1186, 469 N.Y.S.2d 63, cert, denied, 464 U.S. 1026 (1983); United States v. University Hosp., 575 F. Supp. 607 (E.D.N.Y. 1983), aff'd, 729 F.2d 144 (2d Cir. 1984). In Infant Doe, an infant with Down syndrome was allowed to starve to death over a six-day period of time. The lower court judge ruled in favor of the parents' decision to withhold feeding, and the child died before the hospital's appeal could be taken. The Doe case led to the formulation of the Baby Doe regulations, which, for a time during the eighties were mandatorily posted in all hospital nurseries as setting forth the reporting criterion for treatment-withholding cases. In Baby Jane Doe, a child with spina bifida, whose condition could have been alleviated to some degree through post-birth surgery, was allowed to go without surgical treatment in the hopes that she would soon die. The doctors prognosis of severe physical handicap and mental retardation influenced the parental decision to allow her to forgo surgical intervention. The child did not die, and functions on the level of a normal child, albeit with physical difficulties that could have been remedied with surgery at birth.
29. In re Infant Doe, No. GU-8204-004A (Monroe County Cir. Ct., Ind. Apr. 12, 1982), writ of mandamus dismissed sub. nom. State of Indiana ex rel. Infant Doe v. Monroe Circuit Court, No. 482 S 140 (Ind. May 27, 1982); see also Baby Jane Doe cases, Weber v. Stony Brook Hosp., 60 N.Y.2d 208, 456 N.E.2d 1186, 469 N.Y.S.2d 63, cert, denied, 464 U.S. 1026 (1983); United States v. University Hosp., 575 F. Supp. 607 (E.D.N.Y. 1983), aff'd, 729 F.2d 144 (2d Cir. 1984). In Infant Doe, an infant with Down syndrome was allowed to starve to death over a six-day period of time. The lower court judge ruled in favor of the parents' decision to withhold feeding, and the child died before the hospital's appeal could be taken. The Doe case led to the formulation of the Baby Doe regulations, which, for a time during the eighties were mandatorily posted in all hospital nurseries as setting forth the reporting criterion for treatment-withholding cases. In Baby Jane Doe, a child with spina bifida, whose condition could have been alleviated to some degree through post-birth surgery, was allowed to go without surgical treatment in the hopes that she would soon die. The doctors prognosis of severe physical handicap and mental retardation influenced the parental decision to allow her to forgo surgical intervention. The child did not die, and functions on the level of a normal child, albeit with physical difficulties that could have been remedied with surgery at birth.
30. Becker v. Schwartz, 46 N.Y.2d 401, 386 N.E.2d 807, 413 N.Y.S.2d 895 (1978).
31. Partial-Birth Abortion Ban Act of 1995, H.R. REP. No. 104-267, reprinted in Verbatim, 14 ISSUES IN LAW & MED. 61 (1998). Partial birth abortion is a non-traditional method of middle to late term abortion. The doctor detects fetal location via a sonogram, and after inserting instruments to manipulate the child into breach birth position, the child is forced through the birth canal and partially delivered. While the head still remains inside the mother, an instrument is forced into the base of the skull. The cranial contents are suctioned and the head is removed. See also James Bopp, Jr. & Curtis R. Cook, Partial-Birth Abortion: The Final Frontier of Abortion Jurisprudence, 14 ISSUES IN LAW & MED. 3 (1998). This method of performing abortion has been labeled by the Legislative Committee of the American Medical Association as: "Not a recognized medical procedure, a disgusting procedure and not something the Association as a whole should support." The AMA came out neutral during the Congressional hearings on the law, which was ultimately vetoed by Clinton. The Clinton administration held to the position that maternal health justified such use of the procedure. Genetic anomalies detected in the fetus were also cited as favorable criteria for the procedure's application to late term pregnancies. (Interview with Gene Tarne, Communications Director for the Physicians Ad Hoc Coalition for Truth, 200 S. Washington Street, Suite 100, Alexandria, VA 22314 (Dec. 10, 1996).) To understand where we are, and toward what objective we are headed, it will be helpful to start with historical perspectives on the use of genetic information. Recognizing that some pattern of heredity existed, in that parents with certain traits were likely to have offspring with similar traits, social reformers in the late nineteenth century began to promote sterilization measures among members of certain ethnic groups and social classes, and amongst residents of mental institutions. Application of such measures received some negative attention in 1893 "when Dr. F. Pilcher Whit, Medical Director of the Kansas Asylum for Idiotic and Imbecilic Youth took it upon himself to sterilize 57 inmates. The fact that this action led only to job loss without criminal sanctions is illustrative of society's attitude of tolerance toward such measures. In California, the sterilization activist F. W. Hatch had sterilized some twelve thousand inmates by the year 1935, again without societal reproof. R.M. Soskin, Sterilization of the Mentally Retarded: The Rules Change But the Results Remain the Same, 2 MED. L. 267 (1983). See generally, John Eyler, Science, Conscience, and Public Policy: Historical Reflections on Controversial Reproductive Issues, in BEYOND BABY M: ETHICAL ISSUES IN NEW REPRODUCTIVE TECHNIQUES 29 (Dianne M. Bartels et al., eds., 1990).
32. Partial-Birth Abortion Ban Act of 1995, H.R. REP. No. 104-267, reprinted in Verbatim, 14 ISSUES IN LAW & MED. 61 (1998). Partial birth abortion is a non-traditional method of middle to late term abortion. The doctor detects fetal location via a sonogram, and after inserting instruments to manipulate the child into breach birth position, the child is forced through the birth canal and partially delivered. While the head still remains inside the mother, an instrument is forced into the base of the skull. The cranial contents are suctioned and the head is removed. See also James Bopp, Jr. & Curtis R. Cook, Partial-Birth Abortion: The Final Frontier of Abortion Jurisprudence, 14 ISSUES IN LAW & MED. 3 (1998). This method of performing abortion has been labeled by the Legislative Committee of the American Medical Association as: "Not a recognized medical procedure, a disgusting procedure and not something the Association as a whole should support." The AMA came out neutral during the Congressional hearings on the law, which was ultimately vetoed by Clinton. The Clinton administration held to the position that maternal health justified such use of the procedure. Genetic anomalies detected in the fetus were also cited as favorable criteria for the procedure's application to late term pregnancies. (Interview with Gene Tarne, Communications Director for the Physicians Ad Hoc Coalition for Truth, 200 S. Washington Street, Suite 100, Alexandria, VA 22314 (Dec. 10, 1996).) To understand where we are, and toward what objective we are headed, it will be helpful to start with historical perspectives on the use of genetic information. Recognizing that some pattern of heredity existed, in that parents with certain traits were likely to have offspring with similar traits, social reformers in the late nineteenth century began to promote sterilization measures among members of certain ethnic groups and social classes, and amongst residents of mental institutions. Application of such measures received some negative attention in 1893 "when Dr. F. Pilcher Whit, Medical Director of the Kansas Asylum for Idiotic and Imbecilic Youth took it upon himself to sterilize 57 inmates. The fact that this action led only to job loss without criminal sanctions is illustrative of society's attitude of tolerance toward such measures. In California, the sterilization activist F. W. Hatch had sterilized some twelve thousand inmates by the year 1935, again without societal reproof. R.M. Soskin, Sterilization of the Mentally Retarded: The Rules Change But the Results Remain the Same, 2 MED. L. 267 (1983). See generally, John Eyler, Science, Conscience, and Public Policy: Historical Reflections on Controversial Reproductive Issues, in BEYOND BABY M: ETHICAL ISSUES IN NEW REPRODUCTIVE TECHNIQUES 29 (Dianne M. Bartels et al., eds., 1990).
33. Partial-Birth Abortion Ban Act of 1995, H.R. REP. No. 104-267, reprinted in Verbatim, 14 ISSUES IN LAW & MED. 61 (1998). Partial birth abortion is a non-traditional method of middle to late term abortion. The doctor detects fetal location via a sonogram, and after inserting instruments to manipulate the child into breach birth position, the child is forced through the birth canal and partially delivered. While the head still remains inside the mother, an instrument is forced into the base of the skull. The cranial contents are suctioned and the head is removed. See also James Bopp, Jr. & Curtis R. Cook, Partial-Birth Abortion: The Final Frontier of Abortion Jurisprudence, 14 ISSUES IN LAW & MED. 3 (1998). This method of performing abortion has been labeled by the Legislative Committee of the American Medical Association as: "Not a recognized medical procedure, a disgusting procedure and not something the Association as a whole should support." The AMA came out neutral during the Congressional hearings on the law, which was ultimately vetoed by Clinton. The Clinton administration held to the position that maternal health justified such use of the procedure. Genetic anomalies detected in the fetus were also cited as favorable criteria for the procedure's application to late term pregnancies. (Interview with Gene Tarne, Communications Director for the Physicians Ad Hoc Coalition for Truth, 200 S. Washington Street, Suite 100, Alexandria, VA 22314 (Dec. 10, 1996).) To understand where we are, and toward what objective we are headed, it will be helpful to start with historical perspectives on the use of genetic information. Recognizing that some pattern of heredity existed, in that parents with certain traits were likely to have offspring with similar traits, social reformers in the late nineteenth century began to promote sterilization measures among members of certain ethnic groups and social classes, and amongst residents of mental institutions. Application of such measures received some negative attention in 1893 "when Dr. F. Pilcher Whit, Medical Director of the Kansas Asylum for Idiotic and Imbecilic Youth took it upon himself to sterilize 57 inmates. The fact that this action led only to job loss without criminal sanctions is illustrative of society's attitude of tolerance toward such measures. In California, the sterilization activist F. W. Hatch had sterilized some twelve thousand inmates by the year 1935, again without societal reproof. R.M. Soskin, Sterilization of the Mentally Retarded: The Rules Change But the Results Remain the Same, 2 MED. L. 267 (1983). See generally, John Eyler, Science, Conscience, and Public Policy: Historical Reflections on Controversial Reproductive Issues, in BEYOND BABY M: ETHICAL ISSUES IN NEW REPRODUCTIVE TECHNIQUES 29 (Dianne M. Bartels et al., eds., 1990).
34. Partial-Birth Abortion Ban Act of 1995, H.R. REP. No. 104-267, reprinted in Verbatim, 14 ISSUES IN LAW & MED. 61 (1998). Partial birth abortion is a non-traditional method of middle to late term abortion. The doctor detects fetal location via a sonogram, and after inserting instruments to manipulate the child into breach birth position, the child is forced through the birth canal and partially delivered. While the head still remains inside the mother, an instrument is forced into the base of the skull. The cranial contents are suctioned and the head is removed. See also James Bopp, Jr. & Curtis R. Cook, Partial-Birth Abortion: The Final Frontier of Abortion Jurisprudence, 14 ISSUES IN LAW & MED. 3 (1998). This method of performing abortion has been labeled by the Legislative Committee of the American Medical Association as: "Not a recognized medical procedure, a disgusting procedure and not something the Association as a whole should support." The AMA came out neutral during the Congressional hearings on the law, which was ultimately vetoed by Clinton. The Clinton administration held to the position that maternal health justified such use of the procedure. Genetic anomalies detected in the fetus were also cited as favorable criteria for the procedure's application to late term pregnancies. (Interview with Gene Tarne, Communications Director for the Physicians Ad Hoc Coalition for Truth, 200 S. Washington Street, Suite 100, Alexandria, VA 22314 (Dec. 10, 1996).) To understand where we are, and toward what objective we are headed, it will be helpful to start with historical perspectives on the use of genetic information. Recognizing that some pattern of heredity existed, in that parents with certain traits were likely to have offspring with similar traits, social reformers in the late nineteenth century began to promote sterilization measures among members of certain ethnic groups and social classes, and amongst residents of mental institutions. Application of such measures received some negative attention in 1893 "when Dr. F. Pilcher Whit, Medical Director of the Kansas Asylum for Idiotic and Imbecilic Youth took it upon himself to sterilize 57 inmates. The fact that this action led only to job loss without criminal sanctions is illustrative of society's attitude of tolerance toward such measures. In California, the sterilization activist F. W. Hatch had sterilized some twelve thousand inmates by the year 1935, again without societal reproof. R.M. Soskin, Sterilization of the Mentally Retarded: The Rules Change But the Results Remain the Same, 2 MED. L. 267 (1983). See generally, John Eyler, Science, Conscience, and Public Policy: Historical Reflections on Controversial Reproductive Issues, in BEYOND BABY M: ETHICAL ISSUES IN NEW REPRODUCTIVE TECHNIQUES 29 (Dianne M. Bartels et al., eds., 1990).
35. 28 Eyler, supra note 27, at 37.
36. KENNETH M. LUDMERER, GENETICS AND AMERICAN SOCIETY: A HISTORICAL APPRAISAL 48-49 (1972).
37. Id. at 137 (quoting Redcliffe Salaman, Heredity and the Jew, 1 J. GENETICS 276 (1911)).
38. Id.
39. Id. at 57 (quoting Prologue, 1 MENDEL J. 2, 3 (1909)).
40. Eyler, supra note 27, at 37-38 (citation omitted).
41. Buck v. Bell, 274 U.S. 200, 202 (1927).
42. Id. at 205-06.
43. Id. at 208.
44. Id. at 207.
45. ALY GÖTZ ET AL., CLEANSING THE FATHERLAND: NAZI MEDICINE AND RACIAL HYGIENE 36 (Belinda Cooper trans., 1994).
46. Id. at 43.
47. Id. at 53.
48. Id. at 185.
49. Id. at 282.
50. Id. at 284.
51. LUDMERER, supra note 29, at 66.
52. Id. at 69 (quoting Herbert S. Jennings, Health Progress and Race Progress: Are They Incompatible? 18 J. HEREDITY 272 (1927)).
53. Id. at 70.
54. ZSOLT HARSANYI & RICHARD HUTTON, GENETIC PROPHECY: BEYOND THE DOUBLE HELIX (1981).
55. ANNAS, supra note 7, at 151 (citation omitted).
56. Id. at 150-51.
57. Id. at 158 (citation omitted).
58. Id. at 157.
59. Id. at 158-59. What genetic traits would warrant society's intervention into matters of utmost privacy, say, decisions to reproduce, regardless of known genetic propensity? Would we allow insurance companies to deal punitively with such individuals for failing to practice negative eugenics by refraining from polluting the gene pool and driving up health costs?
60. Id. at 161.
61. Presentation, Tom Kaskey, former president of The Amercian Society of Human Genetics, panelist at The American Society of Human Genetics 46th Annual Meeting, San Francisco, Cal. (Oct. 29-Nov. 2, 1996).
62. Interview with Ted Dryja, Ophthalmologist-Geneticist, Massachusetts Eye & Ear Infirmary, in Boston, Mass. (Nov. 29, 1996).
63. PRESIDENT'S COMMISSION, supra note 13.
64. Id. at 38.
65. Interview with Gene Tarne, supra note 27, Communications Director of Physicians' Ad Hoc Coalition For Truth and Fact, in Alexandria, Virginia (Dec. 16, 1996).
66. HARSANYI & HUTTON, supra note 47, at 1.
67. th Annual Meeting, San Francisco, Cal. (Oct. 29-Nov. 2, 1996).
68. Bonnie S. LeRoy, When Theory Meets Practice: Challenges to the Field Of Genetic Counseling, in PRESCRIBING OUR FUTURE: ETHICAL CHALLENGES IN GENETIC COUNSELING 39, 41 (Dianne M. Bartels et al., eds., 1993).
69. Nat'l Soc'y of Genetic Counselors, A Voice, a Resource and an Educational Environment for the Genetic Counseling Profession, 1991, distributed at the 1997 Annual Genetics Conference, in Baltimore, MD, American Society of Genetics Counselors (on file with Cara Dunne).
70. Cara Dunne's notes from visit to the UCLA Prenatal Diagnostic and Medical Genetics Clinic, in Los Angeles, Cal. (Nov. 6, 1996).
71. See PRESIDENT'S COMMISSION, supra note 13, at 56-59. Note that the PRESIDENT'S COMMISSION discourages genetic screening for gender selection. The report asserts we do not want to send out the message that society values one gender over the other.
72. Interview with Mayo Medical Lab personnel, at The American Society of Human Genetics 46th Annual Meeting, San Francisco, Cal. (Oct. 29-Nov. 2, 1996).
73. Interview with Michelle Fox, UCLA Prenatal Diagnostics and Medical Genetics Lab, in Los Angeles, Cal. (Nov. 8, 1996).
74. Presentation, Robert Near, Director of Pediatrics at the Univ. of Iowa, at The American Society of Human Genetics 46th Annual Meeting, San Francisco, Cal. (Oct. 29-Nov. 2, 1996).
75. Presentation, Neal Holtzman, Johns Hopkins University Bioethics Committee, panelist at The American Society of Human Genetics 46th Annual Meeting, San Francisco, Cal. (Oct. 29-Nov. 2, 1996).
76. Presentation, Pat Bar, "Informed Consent," John Hopkins University Bioethics Committee, supra note 68.
77. Becker v. Schwartz, 46 N.Y.2d 401, 386 N.E.2d 807, 413 N.Y.S.2d 895 (1978).
78. Berman v. Allen, 80 N.J. 421, 404 A.2d 8 (1979).
79. Id. at 429. See also, James Bopp, Jr. et al., The "Rights" and "Wrongs" of Wrongful Birth and Wrongful Life: A Jurisprudential Analysis of Birth Related Torts, 27 DUQUESNE L. REV. 461 (1989).
80. Cara Dunne, Subordinating Rights to Responsibilities: The Moral Impermissibility of Abortion Within the Context of Voluntarily Commenced Pregnancy (May 6, 1997) (unpublished manuscript (dissertation) on file with author).
81. Id.
82. 75 Distributed at the 1997 Annual Genetics Conference, in Baltimore, MD, American Society of Genetics Counselors (on file with Cara Dunne).