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"Family matters": a conceptual framework for genetic testing in children.

Publication ,  Journal Article
McConkie-Rosell, A; Spiridigliozzi, GA
Published in: J Genet Couns
February 2004

Genetic testing in minor children presents a complex ethical and social problem. Current guidelines state that genetic testing of children is recommended only under circumstances where a clear medical or psychosocial benefit to the child can be demonstrated. Because of the difficulty in determining a psychosocial benefit, the discussion about genetic testing of minors ultimately tends to focus on who has the right to make the decision and whose right to autonomy is jeopardized, the parent's or the child's, when there is no identified medical benefit. Historically, a western bioethics paradigm, Principlism, has been used to guide genetic counseling sessions and genetic-testing guidelines for minors. This bioethics paradigm is guided by the principles: respect for autonomy, beneficence, nonmaleficence, and justice. Genetic testing in children, when viewed through a traditional bioethics filter is limited by its focus on the individual because children are not only individuals, they are also integral parts of a larger social context, that of their family. Because this bioethics paradigm places a strong emphasis on individual autonomy, the family's beliefs and values and the parents' concern for their children may be overshadowed by the medical community's attempt to preserve the child's "right" to an autonomous decision about genetic testing. The purpose of this paper is to first discuss the circumstances in which genetic testing of minors occurs and then present a theoretical and ethics-based conceptual framework that may be useful in the development of genetic counseling interventions.

Duke Scholars

Published In

J Genet Couns

DOI

ISSN

1059-7700

Publication Date

February 2004

Volume

13

Issue

1

Start / End Page

9 / 29

Location

United States

Related Subject Headings

  • Stress, Psychological
  • Personal Autonomy
  • Minors
  • Humans
  • Genetics & Heredity
  • Genetic Testing
  • Genetic Diseases, Inborn
  • Genetic Counseling
  • Family Relations
  • Family Health
 

Citation

APA
Chicago
ICMJE
MLA
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McConkie-Rosell, A., & Spiridigliozzi, G. A. (2004). "Family matters": a conceptual framework for genetic testing in children. J Genet Couns, 13(1), 9–29. https://doi.org/10.1023/b:jogc.0000013379.90587.ef
McConkie-Rosell, Allyn, and Gail A. Spiridigliozzi. “"Family matters": a conceptual framework for genetic testing in children.J Genet Couns 13, no. 1 (February 2004): 9–29. https://doi.org/10.1023/b:jogc.0000013379.90587.ef.
McConkie-Rosell A, Spiridigliozzi GA. "Family matters": a conceptual framework for genetic testing in children. J Genet Couns. 2004 Feb;13(1):9–29.
McConkie-Rosell, Allyn, and Gail A. Spiridigliozzi. “"Family matters": a conceptual framework for genetic testing in children.J Genet Couns, vol. 13, no. 1, Feb. 2004, pp. 9–29. Pubmed, doi:10.1023/b:jogc.0000013379.90587.ef.
McConkie-Rosell A, Spiridigliozzi GA. "Family matters": a conceptual framework for genetic testing in children. J Genet Couns. 2004 Feb;13(1):9–29.
Journal cover image

Published In

J Genet Couns

DOI

ISSN

1059-7700

Publication Date

February 2004

Volume

13

Issue

1

Start / End Page

9 / 29

Location

United States

Related Subject Headings

  • Stress, Psychological
  • Personal Autonomy
  • Minors
  • Humans
  • Genetics & Heredity
  • Genetic Testing
  • Genetic Diseases, Inborn
  • Genetic Counseling
  • Family Relations
  • Family Health