Problems of Informed Consent and Confidentiality in Genetic Counseling

  • George J. Annas


It is the premise of this paper that all persons who are given genetic counseling should be provided with complete and accurate information concerning the procedures used, the results obtained, the alternatives available, and the reasonably expected risks and problems associated with each such alternative. This premise is based primarily on the right of citizens to self-autonomy, and upon a definition of genetic counseling that has as its primary purpose the “explaining of predicted recurrence risks, with the relevant scientific basis, and describing available reproductive options to families with genetic problems” (1). To further the patient’s interest in both autonomy and privacy, no information obtained in genetic screening or counseling should be disclosed to any third party without the patient’s informed consent.


Genetic Counseling Sickle Cell Disease Reproductive Option American Civil Liberty Therapeutic Privilege 
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  1. 1.
    Hsia, Y.E., Parental reactions to genetic counseling, Contemp. Obstet. Gynecol. 4: 99 (1974).Google Scholar
  2. 2.
    Scotch, N.A., Sorenson, J.R. and Swazey, J.P., “An Evaluation of Birth Defects and Genetic Services/Programs Supported by the National Foundation — March of Dimes.” This two year proposal was submitted in November 1974 and funded in March 1975. Dept. of Socio-Medical Sciences, Boston University School of Medicine (unpublished funding proposal).Google Scholar
  3. 3.
    National Academy of Sciences, “Genetic Screening: Procedural Guidance and Recommendations,” Nat. Acad. Sci., Washington, D.C. (1975) p. 28.Google Scholar
  4. 4.
    Sibinga, M.S. and Friedman, C.J., Complexities of parental understanding of phenylketonuria, Pediatrics 48: 216 (1971).Google Scholar
  5. 5.
    Emery, A.E.H., Watt, M.S. and Clack, E., Social effects of genetic counseling, Brit. Med. J. 1: 724 (1973).CrossRefGoogle Scholar
  6. 6.
    Leonard, C.O., Chase, G.A. and Childs, B., Genetic counseling: a consumer’s view, New Eng. J. Med. 287: 433 (1972).CrossRefGoogle Scholar
  7. 7.
    Fort, A.T., Morrison, J.C., Berreras, L. et al, Counseling the patient with sickle cell disease about reproduction: pregnancy outcome does not justify the maternal risk!, Amer. J. Obstet. Gynecol. 111: 324 (1971).Google Scholar
  8. 8.
    Gray, B., Human Subjects in Medical Experimentation, John Wiley & Sons, New York (1975).Google Scholar
  9. 9.
    Krauss, E., Hospital Survey on Sterilization Policies, American Civil Liberties Union, New York (1975).Google Scholar
  10. 10.
    E. g., Ingelfinger, F., Informed (but uneducated) consent, New Eng. J. Med. 287: 465, (1972).Google Scholar
  11. 11.
    Alfidi, Informed consent, ijx Meaney, Et al., Complications and Legal Implications of Radiologic Special Procedures, Mosby, St. Louis (1973); and Alfidi, Informed consent: a study of patient reaction, J.A.M.A. 216: 1325 (1971).Google Scholar
  12. 12.
    Pearn, J.H., Patients’ subjective interpretation of risks offered in genetic counseling, J. Med. Genet. 10: 129 (1973).CrossRefGoogle Scholar
  13. 13.
    Harper and James, The Law of Torts ( 1968 Supp.) sec. 171. 1, p. 61.Google Scholar
  14. 14.
    Annas, G.J., The Rights of Hospital Patients, ch. VIII, Consultation, referral and abandonment, Avon Books, New York (1975).Google Scholar
  15. 15.
    Waltz, J.R. and Thigpen, C.R., Genetic screening and counseling: legal and ethical implications, Northwestern U. L. Rev. 68: 696, 757 (1974).Google Scholar
  16. 16.
    .83 Wash. 2d 514, 519 P.2d 981 (1974).Google Scholar
  17. 17.
    Annas, G.J., The case of the simple, harmless, inexpensive, conclusive, diagnostic test, Orthopaedic Rev. 4: 67 (1975).Google Scholar
  18. 18.
    Milunsky, A. and Reilly, P., The “New” Genetics: Emerging medico-legal issues in the prenatal diagnosis of hereditary disorders, Amer. J. Law Med. 1: 71 (1975).Google Scholar
  19. 19.
    Glietman v. Cosgrove, 49 N.J. 22, 227 A. 2d 689 (1967).Google Scholar
  20. 20.
    Capron, A.M., Informed decision-making in genetic counseling: a dissent to the “wrongful life” debate, Indiana L. J. 1971: 581, p. 595.Google Scholar
  21. 21.
    Jacobs v. Theimer, 519 S.W. 2d 846, 849 (Texas, 1975 ).Google Scholar
  22. 22.
    cf. J.M. Friedman, Legal implications of amniocentesis, U. Pa. L. Rev. 123: 92, 146 (1974).Google Scholar
  23. 23.
    Annas, G.J., The Rights of Hospital Patients, ch. VI, Informed consent to treatment, Avon Books, New York (1975).Google Scholar
  24. 24.
    National Institute of Mental Health, Report on the XYY Chromosomal Abnormality, U.S. Gov. Printing Office, Washington, D.C. (PHS Pub. No. 2103 ) (1970).Google Scholar
  25. 25.
    Milunsky, A., The Prenatal Diagnosis of Hereditary Disorders. Charles C. Thomas, Springfield (1973) p. 159.Google Scholar
  26. 26.
    Annas, G.J., Law and psychiatry: when must the doctor’ warn others of the potential dangerousness of his patient’s conditions? Medicolegal News 3: 1 (1975).Google Scholar
  27. 27.
    Tarasoff v. Regents of U. of Cal., 118 Cal. Rptr. 129, 529 F. 2d 553 (1974).Google Scholar
  28. 28.
    Annas, G.J., The Rights of Hospital Patients, ch. XI, Confidentiality and privacy, Avon Books, New York (1975).Google Scholar

Copyright information

© Plenum Press, New York 1976

Authors and Affiliations

  • George J. Annas
    • 1
  1. 1.Center for Law and Health SciencesBoston University School of LawUSA

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