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September 21, 1994, Vol 272, No. 11 >
ARTICLE | September 21, 1994

Genetic Testing for Children and Adolescents: Title and subTitle BreakWho Decides? FREE

Dorothy C. Wertz, PhD; Joanna H. Fanos, PhD; Philip R. Reilly, MD, JD
[+] Author Affiliations

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


JAMA. 1994;272(11):875-881. doi:10.1001/jama.1994.03520110055029
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References

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)

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Wadlington WJ.  Minors and health care: the age of consent. Osgoode Hall Law J . 1973;;11:115-125.
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Ewald LS.  Medical decision making for children: an analysis of competing interests. St Louis Univ Law J . 1982;;25:689-733.
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Figures

Tables

Interactive Graphics

Video

Country-Specific Mortality and Growth Failure in Infancy and Yound Children and Association With Material Stature

Use interactive graphics and maps to view and sort country-specific infant and early dhildhood mortality and growth failure data and their association with maternal

1 +
The Huntington Disease Collaborative Research Group.  A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes. Cell . 1993;;72:971-983.
2 +
Gabow PA.  Autosomal dominant polycystic kidney disease. N Engl J Med . 1993;;329:332-342.
3 +
Peterson GP, Francomano C, Kinzler K, Nakamura Y.  Presymptomatic direct detection of adenomatous polyposis coli (APC) gene mutations in familial polyposis coli. Hum Genet . 1993;;91:307-311.
4 +
Peltomaki P, Aaltonen LA, Sistonen P.  Genetic mapping of a locus predisposing to human colorectal cancer. Science . 1993;;260:810-812.
5 +
Bloch M, Hayden MA.  Predictive testing for Huntington disease in childhood: challenges and implications. Am J Hum Genet . 1990;;46:1-4.
6 +
Chapman MA.  Predictive testing for adult-onset genetic disease: ethical and legal implications of the use of linkage analysis for Huntington disease. Am J Hum Genet . 1990;;47:1-3.
7 +
Craufurd C, Donnai D, Kerzin-Storrar L, Osborn M.  Testing of children for 'adult' genetic diseases. Lancet . 1990;;335:1406.
8 +
Wiggins S, Whyte P, Huggins M, et al.  The psychological consequences of predictive testing for Huntington's disease. N Engl J Med . 1992;;327:1401-1405.
9 +
Sharpe N.  Presymptomatic testing for Huntington disease: is there a duty to test those under the age of eighteen years? Am J Med Genet . 1993;;46:250-253.
10 +
Biesecker BB, Boehnke M, Calzone K, et al.  Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. JAMA . 1993;;269:1970-1974.
11 +
The Genetic Testing of Children: Report of a Working Party of the Clinical Genetics Society, Angus Clarke, Chair . Edgbaston and Birmingham, United Kingdom: Clinical Genetics Society, Birmingham Maternity Hospital; 1993;.
12 +
Went L.  Ethical issues policy statement on Huntington's disease molecular genetics predictive test. J Med Genet . 1990;;27:34-38.
13 +
Institute of Medicine, Committee on Assessing Genetic Risks. Assessing Genetic Risks: Implication for Health and Social Policy . Washington, DC: National Academy Press; 1993;.
14 +
Harper PS, Clarke A.  Should we test children for 'adult' genetic diseases? Lancet . 1990;;335:1205-1206.
15 +
Gabow A, Grantham JJ, Bennett W, et al.  Gene testing in autosomal dominant adult polycystic kidney disease: results of a National Kidney Foundation workshop. Am J Kidney Dis . 1989;;13:85-87.
16 +
Page A, Eng B, Chang PL, Waye JS.  Attitudes of high school students toward carrier screening for cystic fibrosis. Am J Hum Genet . 1992;;51( (suppl) ): abstract 17.
17 +
Wexler NS.  Genetic jeopardy and the new clairvoyance. Prog Med Genet . 1985;;6:277-304.
18 +
Kessler S.  Invited essay on the psychological aspects of genetic counseling v. preselection: a family coping strategy in Huntington disease. Am J Med Genet . 1988;;31:617-621.
19 +
Fox S, Bloch M, Fahy M, Hayden MR.  Predictive testing for Huntington disease, 1: description of a pilot project in British Columbia. Am J Med Genet . 1989;;32:211-216.
20 +
Fanos JH, Johnson JP.  Still living with cystic fibrosis: the well sibling revisited. Pediatr Pulmonol . September 1992;( (suppl 8) ):228-229.
21 +
Fanos JH, Nickerson BG.  Long-term effects of sibling death during adolescence. J Adolesc Res . 1991;;6:70-82.
22 +
Fanos JH, Johnson JP.  Barriers to carrier testing for CF siblings. Am J Hum Genet . 1993;;53 ( (suppl) ):abstract 51.
23 +
Green AH.  Children traumatized by physical abuse.  In: Eth S, Pynoos RS, eds. Post-traumatic Stress Disorder in Children . Washington, DC: American Psychiatric Press; 1985;:133-154. The Progress in Psychiatry Series.
24 +
Green M, Solnit AJ.  Reactions to the threatened loss of a child: a vulnerable child syndrome. Pediatrics . 1964;;34:58-77.
25 +
Koocher GP.  Psychosocial issues during the acute treatment of pediatric cancer. Cancer . 1986;; 58:468-472.
26 +
Bauer IL.  Attitudes of children with rheumatic fever. J Pediatr . 1952;;40:796-806.
27 +
Korsch BM.  Psychologic reactions to physical illness in children. J Med Assoc Ga . 1961;;50:519-523.
28 +
Sheridan MS.  Talk time for hospitalized children. Soc Work . 1975;;20:40-44.
29 +
Perrin EC, Gerrity PS.  There's a demon in your belly: children's understanding of illness. Pediatrics . 1981;;67:841-849.
30 +
Maddux JE, Roberts MC, Sledden EA, Wright L.  Developmental issues in child health psychology. Am Psychol . 1986;;41: 25-34.
31 +
Broyde CF.  The role of children in making health care decisions. Natl Jewish Law Rev . 1987;;2:123-135.
32 +
Aries P. Centuries of Childhood: A Social History of Family Life . New York, NY: Vintage Books; 1965;.
33 +
Zelizer VA. Pricing the Priceless Child: The Changing Social Value of Children . New York, NY: Basic Books Inc Publishers; 1985;.
34 +
Nicholson RH. Medical Research With Children: Ethics, Law, and Practice . Oxford, England: Oxford University Press; 1986;.
35 +
Friedenberg EZ. Coming of Age in America: Growth and Acquiescence . New York, NY: Irvington; 1965;.
36 +
Platt AM. The Child Savers: The Invention of Delinquency . Chicago, Ill: University of Chicago Press; 1969;.
37 +
Mead M. Coming of Age in Samoa . New York, NY: William Morrow & Co Inc; 1971;.
38 +
Medical Research Council of Canada. Guidelines on Research Involving Human Subjects . Ottawa, Ontario: Minister of Supply and Services; 1987;.
39 +
Kett JF. Rites of Passage: Adolescence in America 1790 to the Present . New York, NY: Basic Books Inc Publishers; 1977;.
40 +
Holder AR.  Children and adolescents: their right to decide about their own health care.  In: Kopelman LM, Moskop JC, eds. Children and Health Care: Moral and Social Issues . Dordrecht, the Netherlands: Kluwer Academic Publishers; 1989;:161-172.
41 +
Bennett R.  Allocation of child medical care decision-making authority: a suggested interest analysis. Va Law Rev . 1976;;62:285-330.
42 +
Wadlington WJ.  Minors and health care: the age of consent. Osgoode Hall Law J . 1973;;11:115-125.
43 +
Ewald LS.  Medical decision making for children: an analysis of competing interests. St Louis Univ Law J . 1982;;25:689-733.
44 +
Ambuel B, Rappaport J.  Developmental trends in adolescents' psychological and legal competence to consent to abortion. Law Hum Behav . 1992;;16: 129-154.
45 +
Holder AR. Legal Issues in Pediatrics and Adolescent Medicine . New York, NY: John Wiley & Sons Inc; 1977;.
46 +
Holder AR.  Disclosure and consent problems in pediatrics. Law Med Health Care . 1988;;16:219-228.
47 +
Gans J, ed. A Policy Compendium on Confidential Health Services for Adolescents . Chicago, Ill: American Medical Association; 1993;.
48 +
Reilly PR. The Surgical Solution . Baltimore, Md: The Johns Hopkins University; 1991;.
49 +
Freedman SD.  Consent to medical treatment for minors under care of children services board. Capitol Univ Law Rev . 1980;;10:309-323.
50 +
Piaget J. The Moral Judgement of the Child . New York, NY: Free Press; 1965;.
51 +
Piaget J, Inhelder B. The Psychology of the Child . New York, NY: Basic Books Inc Publishers; 1969;.
52 +
Kohlberg L.  Moral stages and moralization: the cognitive-developmental approach.  In: Lickona T, ed. Moral Development and Behavior: Theory, Research, and Social Issues . New York, NY: Holt Rinehart & Winston; 1976;:31-53.
53 +
Bibace R, Walsh ME.  Development of children's concepts of illness. Pediatrics . 1980;;66:912-917.
54 +
Gilligan C. In a Different Voice: Psychological Theory and Women's Moral Development . Cambridge, Mass: Harvard University Press; 1982;.
55 +
Lewis CE, Lewis MA, Ifekwanigue M.  Informed consent by children and participation in an influenza vaccine trial. Am J Public Health . 1978;;68:1079-1082.
56 +
Lewis CE.  Decision making related to health: when could/should children act responsibly?  In: Melton GB, Koocher GP, Saks MJ, eds. Children's Competence to Consent . New York, NY: Plenum Press; 1983;:75-91.
57 +
Kister MC, Patterson CJ.  Children's conceptions of the causes of illness: understanding of contagion and use of immanent justice. Child Dev . 1980;;51:839-846.
58 +
Millstein SG, Adler NE, Irwin CE.  Conceptions of illness in young adolescents. Pediatrics . 1981;;68:834-839.
59 +
Eiser C, Patterson D.  'Slugs and snails and puppydog tails'—children's ideas about the inside of their bodies. Child Care Health Dev . 1983;;9:233-240.
60 +
Susman EJ, Dorn LD, Fletcher JC.  Reasoning about health and illness in ill and healthy children and adolescents: cognitive and emotional developmental aspects. Dev Behav Pediatr . 1987;;8:266-273.
61 +
Susman EJ, Dorn LD, Fletcher JC.  Participation in biomedical research: the consent process as viewed by children, adolescents, young adults, and physicians. J Pediatr . 1992;;121:547-552.
62 +
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63 +
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