title: The genetic testing of children for cancer susceptibility: ethical, legal, and social issues.
abstract: Genetic testing for cancer susceptibility raises many ethical, legal, and social concerns, particularly when testing children is also considered. The complexity of defining medical and psychosocial risks and benefits of genetic predisposition testing for multifactorial disorders, like cancer, is discussed. Presumed incompetence of children and adolescents and questionable ability of many adults to understand complex genetic information raise informed consent questions. Guidelines can aid professionals but there must also be a means of evaluating individual cases. Further research is needed to determine optimal methods of educating children and adults about genetic issues and to discriminate factors which contribute to satisfaction with decision-making about genetic testing. Legal issues and practical considerations are examined involving a duty to warn family members about genetic susceptibility and to recontact previously-tested individuals as knowledge advances. Recommendations are offered concerning roles for social scientists and legal scholars in ethical integration of genetic testing into our medical and social framework.
authors.affiliation: Dana-Farber Cancer Institute, Boston, MA 02115, USA. andrea_patenaude@dfci.harvard.edu
authors.forename: A F
authors.initials: AF
authors.lastname: Patenaude
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002651:Child Advocacy / Q000331:legislation & jurisprudence*; D004992:Ethics, Medical; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000331:legislation & jurisprudence*; D006266:Health Education; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence; D016743:Mental Competency; D009369:Neoplasms / Q000235:genetics* / Q000517:prevention & control*; D014481:United States