title: Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.
abstract: In 1995, the American Society of Human Genetics (ASHG) and American College of Medical Genetics and Genomics (ACMG) jointly published a statement on genetic testing in children and adolescents. In the past 20 years, much has changed in the field of genetics, including the development of powerful new technologies, new data from genetic research on children and adolescents, and substantial clinical experience. This statement represents current opinion by the ASHG on the ethical, legal, and social issues concerning genetic testing in children. These recommendations are relevant to families, clinicians, and investigators. After a brief review of the 1995 statement and major changes in genetic technologies in recent years, this statement offers points to consider on a broad range of test technologies and their applications in clinical medicine and research. Recommendations are also made for record and communication issues in this domain and for professional education.
authors.affiliation: University of Utah, Salt Lake City, UT 84112, USA. Electronic address: jeffrey.botkin@hsc.utah.edu.
authors.forename: Jeffrey R
authors.initials: JR
authors.lastname: Botkin
authors.affiliation: Baylor College of Medicine, Houston, TX 77030, USA.
authors.forename: John W
authors.initials: JW
authors.lastname: Belmont
authors.affiliation: University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA.
authors.forename: Jonathan S
authors.initials: JS
authors.lastname: Berg
authors.affiliation: National Human Genome Research Institute, Bethesda, MD 20892, USA.
authors.forename: Benjamin E
authors.initials: BE
authors.lastname: Berkman
authors.affiliation: University of Toronto, Toronto, ON M5B 1T8, Canada; Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON M5B 1W8, Canada.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Bombard
authors.affiliation: Boston Children's Hospital, Boston, MA 02115, USA.
authors.forename: Ingrid A
authors.initials: IA
authors.lastname: Holm
authors.affiliation: Johns Hopkins University, Baltimore, MD 21205, USA.
authors.forename: Howard P
authors.initials: HP
authors.lastname: Levy
authors.affiliation: Stanford University, Stanford, CA 94305, USA.
authors.forename: Kelly E
authors.initials: KE
authors.lastname: Ormond
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.
authors.forename: Howard M
authors.initials: HM
authors.lastname: Saal
authors.affiliation: Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
authors.forename: Nancy B
authors.initials: NB
authors.lastname: Spinner
authors.affiliation: Seattle Children's Hospital, Seattle, WA 98101, USA.
authors.forename: Benjamin S
authors.initials: BS
authors.lastname: Wilfond
authors.affiliation: American Society of Human Genetics, Bethesda, MD 20814, USA.
authors.forename: Joseph D
authors.initials: JD
authors.lastname: McInerney
mesh_terms: D000293:Adolescent; D002648:Child; D006580:Genetic Carrier Screening; D005820:Genetic Testing / Q000941:ethics* / Q000331:legislation & jurisprudence* / Q000639:trends*; D005823:Genetics / Q000266:history*; D023281:Genomics / Q000941:ethics / Q000379:methods*; D049673:History, 20th Century; D049674:History, 21st Century; D006801:Humans; D007231:Infant, Newborn; D057828:Informed Consent By Minors / Q000523:psychology*; D046228:Microarray Analysis / Q000379:methods / Q000639:trends; D010597:Pharmacogenetics / Q000379:methods