Testing Minors for Inherited Cancer Risk

  • Mary Z. Pelias


Recent advances in the technology of molecular genetics have extended the powers of individuals and health care professionals to control the ravages of genetic disease. These powers now include a spectrum of genetic tests that can predict future disease or disease susceptibility. Accurate prediction of future disease was first realized when detection of the gene for Huntington disease became a medical reality.1 This first step was subsequently expanded to include tests for some cancers, including familial ademomatous polyposis2 and Von Hippel-Lindau syndrome.3 Particularly dramatic in determining disease susceptibility has been the development of tests for genes that cause breast and ovarian cancer—tests that determine an increased probability, though not a certainty, of developing these dreaded diseases.4 These and other molecular genetic tests are now used for determining the genetic status of current patients as well as for pre-conception and prenatal testing for the purpose of avoiding the birth of children destined to suffer serious genetic diseases.


Genetic Testing Health Care Professional Huntington Disease Medical Genetic Medical Malpractice 
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  1. 1.
    Brandt J, Quaid KA, Folstein SE, Garber P, Maestri NME, Abbott MH, Slavney PR, et al: Presymp-tomatic diagnosis of delayed-onset disease with linked DNA markers: the experience in Huntington’s disease. JAMA 261:3108–3114, 1989PubMedCrossRefGoogle Scholar
  2. 2.
    Nishisho I, Nakamura Y, Miyoshi Y, Miki Y, Ando H, Horii A, et al: Mutations of chromosome 5q21 genes in FAP and colorectal cancer patients. Science 253:665–669, 1991PubMedCrossRefGoogle Scholar
  3. 3.
    Latif F, Tory K, Gnarra J, Yao M, Duh F, Orcutt ML, et al: Identification of the von Hippel-Lindau disease tumor suppressor gene. Science 260:1317–1320, 1993PubMedCrossRefGoogle Scholar
  4. 4.
    King MC, Rowell S, Love SM: Inherited breast and ovarian cancer: What are the risks? What are the choices? JAMA 269:1975–1980, 1993PubMedCrossRefGoogle Scholar
  5. 5.
    Block M, Hayden MR: Opinion; Predictive testing for Huntington disease in childhood: challenges and implications. Am J Hum Genet 46:1–4, 1990Google Scholar
  6. 6.
    Biesecker BB, Boehnke M, Calzone K, Markel MS, Garber JE, Collins FS, Weber BL: Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. JAMA 269:1970–1974, 1993PubMedCrossRefGoogle Scholar
  7. 7.
    ASHG/ACMG Report. Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet 57:1233–1241, 1995Google Scholar
  8. 8.
    Peterson GP, Francomano C, Kinzler K, Nakamura Y: Presymptomatic direct detection of adenoma-tous polyposis coli (APC) gene mutations in familial polyposis coli. Hum Genet 91:307–311, 1993Google Scholar
  9. 9.
    Wertz DC, Fanos JH, Reilly PR: Genetic testing for children and adolescents: Who decides? JAMA 272:875–881, 1994PubMedCrossRefGoogle Scholar
  10. 10.
    Holder AR: Disclosure and consent problems in pediatrics. Law, Med, Health Care 16(3–4):219–228, 1988Google Scholar
  11. 11.
    Clayton EW: Removing the shadow of the law from the debate about genetic testing of children. Am J Med Genet 57:630–634, 1995PubMedCrossRefGoogle Scholar
  12. 12.
    Holtzman NA, Watson MS, eds: Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task force on Genetic Testing. Bethesda, MD: The National Institutes of Health, 1997Google Scholar
  13. 13.
    McLaughlin MM: Survivors and surrogates: Children and parents from the ninth to the thirteenth centuries, in deMause L (ed): The History of Childhood. New York, Harper & Row, p 140, 1970Google Scholar
  14. 14.
    Meyer v. Nebraska, 262 US 390,399, 1929Google Scholar
  15. 15.
    Pierce v. Society of Sisters, 268 US 510,535, 1925Google Scholar
  16. 16.
    Wisconsin v. Yoder. 406 US 205,1972Google Scholar
  17. 17.
    Bowen v. American Hosp Ass’n. 476 US 610,627, 1986Google Scholar
  18. 18.
    Parham v. JK All US 584, 1978Google Scholar
  19. 19.
    Hankerson v. Thomas, 148 A.2d 583, D.C. 1959Google Scholar
  20. 20.
    Gifis SG: Dictionary of Legal Terms. New York, Barron’s Educational Series, Inc., p 180, 1983Google Scholar
  21. 21.
    Wertz DC, Fletcher JC: Ethics and genetics: An international survey. Hastings Ctr Rprt Supp 19(4):20–24, 1989CrossRefGoogle Scholar
  22. 22.
    American Society of Human Genetics Ad Hoc Committee on Genetic Counseling. Genetic counseling. Am J Hum Genet 27:240–241, 1975Google Scholar
  23. 23.
    Pelias MZ, Blanton SH: Genetic testing in children and adolescents: Parental authority, the rights of children, and the duties of geneticists. Univ of Chicago Law School Roundtable 3(2):525–543, 1996Google Scholar
  24. 24.
    Chapman MA: Canadian experience with predictive testing for Huntington disease: Lessons for genetic testing centers and policy makers. Am J Med Genet 42:491–498, 1992PubMedCrossRefGoogle Scholar
  25. 25.
    Pelias MZ: Medicolegal aspects of prenatal diagnosis, in Milunsky A (ed): Genetic Disorders and the Fetus: Diagnosis, Prevention, and Treatment. Baltimore, MD, Johns Hopkins, 4th ed, 972–998, 1998Google Scholar

Copyright information

© Springer Science+Business Media New York 1999

Authors and Affiliations

  • Mary Z. Pelias
    • 1
  1. 1.Louisiana State University Medical CenterUSA

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