This Article  • References  • Full text PDF  • Send to a friend  • Save in My Folder  • Save to citation manager  • Permissions  Citing Articles  • Citation map  • Citing articles on HighWire  • Contact me when this article is cited  Related Content  • Similar articles in JAMA  Social Bookmarking   What's this?

Who Decides?

Dorothy C. Wertz, PhD; Joanna H. Fanos, PhD; Philip R. Reilly, MD, JD

JAMA. 1994;272(11):875-881.

Abstract
In the future there is likely to be a large array of DNA-based tests to diagnose single-gene disorders and to identify predispositions to genetically influenced disorders. This article focuses on ethical, legal, and psychological implications of testing healthy children and adolescents for such disorders. Testing may offer medical or psychological benefits but may harm parent-child bonds or the child's self-concept. Clinicians may encounter situations where they must weigh the child's or adolescent's wishes against wishes of parents. We examine the legal history and current status of minors as health care consumers; psychosocial research on their maturity to make choices; impact of testing on intrafamilial relationships; views of national commissions on appropriate ages of assent and full informed consent; ethical and legal requirements for competence in children and adolescents; and disclosure of genetic information. We propose guidelines for predictive genetic testing and counseling of children and discuss risks and benefits of testing.

(JAMA. 1994;272:875-881)

Author Affiliations
From The Shriver Center for Mental Retardation, Inc, Waltham, Mass (Drs Wertz and Reilly), and the California Pacific Medical Center, San Francisco (Dr Fanos). The Shriver Center operates a Tay-Sachs Disease and Lysosomal Disorder Testing Laboratory. It tests samples from children. Dr Reilly owns stock in Genzyme, a company that owns a majority interest in Integrated Genetics, which operates genetic testing laboratories that test samples from children. He has a consulting contract with Integrated Genetics and is a consultant to Genica, Inc, a privately held company that offers genetic testing to children, among others.

Footnotes
Reprint requests to Division of Social Science, Ethics, and Law, Shriver Center for Mental Retardation, Inc, 200 Trapelo Rd, Waltham, MA 02254 (Dr Wertz).

CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    Twitter     What's this?

THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES

Ensuring the Safe Use of Genomic Medicine in Children
Haga and Terry
CLIN PEDIATR 2009;48:703-708.
ABSTRACT  

From Genetics to Genomics: Ethics, Policy, and Parental Decision-making
Wilfond and Ross
J Pediatr Psychol 2009;34:639-647.
ABSTRACT | FULL TEXT  

Predictive genetic testing of children for adult-onset diseases and psychological harm
Malpas
J. Med. Ethics 2008;34:275-278.
ABSTRACT | FULL TEXT  

How Often Do BRCA Mutation Carriers Tell Their Young Children of the Family's Risk for Cancer? A Study of Parental Disclosure of BRCA Mutations to Minors and Young Adults
Bradbury et al.
JCO 2007;25:3705-3711.
ABSTRACT | FULL TEXT  

Genetic Basis for Congenital Heart Defects: Current Knowledge: A Scientific Statement From the American Heart Association Congenital Cardiac Defects Committee, Council on Cardiovascular Disease in the Young: Endorsed by the American Academy of Pediatrics
Pierpont et al.
Circulation 2007;115:3015-3038.
ABSTRACT | FULL TEXT  

Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit
Bailey et al.
AJPH 2005;95:1889-1893.
ABSTRACT | FULL TEXT  

Hemophilia: A Practical Approach to Genetic Testing
Pruthi
Mayo Clin Proc. 2005;80:1485-1499.
ABSTRACT  

Depressive Symptoms in Mothers of Infants Identified as Genetically at Risk for Type 1 Diabetes
Hood et al.
Diabetes Care 2005;28:1898-1903.
ABSTRACT | FULL TEXT  

Genetic Testing: Practical, Ethical, and Counseling Considerations
Ensenauer et al.
Mayo Clin Proc. 2005;80:63-73.
ABSTRACT  

Primer on Medical Genomics Part XIII: Ethical and Regulatory Issues
Hook et al.
Mayo Clin Proc. 2004;79:645-650.
ABSTRACT  

American Society of Clinical Oncology Policy Statement Update: Genetic Testing for Cancer Susceptibility
JCO 2003;21:2397-2406.
ABSTRACT | FULL TEXT  

Pediatric Psychology Training and Genetics: What Will Twenty-First-Century Pediatric Psychologists Need to Know?
Patenaude
J Pediatr Psychol 2003;28:135-145.
ABSTRACT | FULL TEXT  

Parental attitude towards genetic testing for familial hypercholesterolaemia in children
Umans-Eckenhausen et al.
J. Med. Genet. 2002;39:e49-49.
FULL TEXT  

Predictive genetic testing in children and adults: a study of emotional impact
Michie et al.
J. Med. Genet. 2001;38:519-526.
ABSTRACT | FULL TEXT  

Screening for familial adenomatous polyposis
HYER and FELL
Arch. Dis. Child. 2001;84:377-380.
FULL TEXT  

Attitudes of von Hippel-Lindau disease patients towards presymptomatic genetic diagnosis in children and prenatal diagnosis
LEVY and RICHARD
J. Med. Genet. 2000;37:476-479.
FULL TEXT  

Withholding life-sustaining treatment: Are adolescents competent to make these decisions?
CMAJ 2000;162:1585-1588.
 

Testing Adolescents for a Hereditary Breast Cancer Gene (BRCA1): Respecting Their Autonomy Is in Their Best Interest
Elger and Harding
Arch Pediatr Adolesc Med 2000;154:113-119.
ABSTRACT | FULL TEXT  

Can children and young people consent to be tested for adult onset genetic disorders? • Commentary: Weighing burdens and benefits rather than competence
Dickenson and Geller
BMJ 1999;318:1063-1066.
FULL TEXT  

Cancer Control in Susceptible Groups: Opportunities and Challenges
Li
JCO 1999;17:719-719.
ABSTRACT | FULL TEXT  

The Use and Interpretation of Commercial APC Gene Testing for Familial Adenomatous Polyposis
Giardiello et al.
NEJM 1997;336:823-827.
ABSTRACT | FULL TEXT  

Genetic Testing for Cancer in Children: Short-term Psychological Effect
Codori et al.
Arch Pediatr Adolesc Med 1996;150:1131-1138.
ABSTRACT  

Informed Consent for Genetic Research on Stored Tissue Samples
Clayton et al.
JAMA 1995;274:1786-1792.
ABSTRACT  

Genetic Testing for Children and Adolescents
Burke
JAMA 1995;273:1089-1089.
ABSTRACT  

Genetic Testing for Children and Adolescents
Lebel
JAMA 1995;273:1089-1089.
ABSTRACT  

Genetic Testing for Children and Adolescents
Uzych
JAMA 1995;273:1089-1090.
ABSTRACT