Ethical and Legal Issues



  • Advances in genetic testing have significantly enhanced our ability to care for children affected by or at risk for cancer. Genetic testing can now lead to a true customization of management for the child with cancer, as well as identify the reason the cancer has occurred, and even identify family members at risk for developing cancer. However, as with any advance in biomedical science, the expansion of the use of genetic testing has been accompanied by a number of bioethical concerns. When faced with a clinical dilemma that requires bioethical decision-making, it is essential for the healthcare provider to have an understanding of the principles of bioethics: autonomy, beneficence, nonmaleficence, and justice. It is the balance between these principles that is always in question when one is confronted by an ethically challenging situation in cancer genetic testing. While many bioethical dilemmas are similar to those encountered in any medical testing, some have argued that the information gained through genetic testing has unique features that must be considered. Termed "genetic exceptionalism", others have argued that genetic information is really no different than other medical information. Unfortunately, Federal laws and legal precedent provide little guidance when facing ethical dilemmas surrounding genetic testing. Medical and genetic professional societies have statements, but these are vague and may not be helpful in specific situations. Lastly, any form of genetic testing takes on an added level of complexity when done in pediatric age patients, as special concerns apply.
  • Authors

    Digital Object Identifier (doi)

    International Standard Book Number (isbn) 13

  • 9780323485555
  • Start Page

  • 93
  • End Page

  • 100