|
| ||||||||||||||||||||||||||||||||||||||||||||||||
PEDIATRICS Vol. 107 No. 6 June 2001, pp. 1451-1455
AMERICAN ACADEMY OF PEDIATRICS:
Ethical Issues With Genetic Testing in Pediatrics
Advances in genetic research promise great strides
in the diagnosis and treatment of many childhood diseases. However,
emerging genetic technology often enables testing and screening before the development of definitive treatment or preventive measures. In
these circumstances, careful consideration must be given to testing and
screening of children to ensure that use of this technology promotes
the best interest of the child. This statement reviews considerations
for the use of genetic technology for newborn screening, carrier
testing, and testing for susceptibility to late-onset conditions.
Recommendations are made promoting informed participation by parents
for newborn screening and limited use of carrier testing and testing
for late-onset conditions in the pediatric population. Additional
research and education in this developing area of medicine are
encouraged.
Statements of reaffirmation:
- AAP Publications Retired and Reaffirmed
- American Academy of Pediatrics
Pediatrics 2005 115: 1438.[Extract] [Full Text] [PDF]
-
AAP Publications Retired and Reaffirmed
Pediatrics 2009 123: 1421-1422.[Extract] [Full Text] [PDF]
This article has been cited by other articles:
![]() |
F A Miller, R Z Hayeems, Y Bombard, J Little, J C Carroll, B Wilson, J Allanson, M Paynter, J P Bytautas, R Christensen, et al. Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening J. Med. Ethics, October 1, 2009; 35(10): 626 - 634. [Abstract] [Full Text] [PDF] |
||||
![]() |
A. A. Trott and R. Matalon When Should Children Be Tested for Genetic Diseases? Pediatrics, October 1, 2009; 124(4): e807 - e808. [Full Text] [PDF] |
||||
![]() |
B. A. Tarini, D. Singer, S. J. Clark, and M. M. Davis Parents' Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment Pediatrics, September 1, 2009; 124(3): e432 - e438. [Abstract] [Full Text] [PDF] |
||||
![]() |
F. A. Miller, R. Z. Hayeems, and J. S. Robert CARRIER DETECTION AND CLINICAL UNCERTAINTY: THE CASE FOR PUBLIC HEALTH ETHICS Am J Public Health, August 1, 2009; 99(8): 1349 - 1350. [Full Text] [PDF] |
||||
![]() |
R. C. Tervo and P. Wojda The Principle of Double Effect, Genetic Testing, and Global Developmental Delay J Child Neurol, August 1, 2009; 24(8): 1030 - 1036. [Abstract] [PDF] |
||||
![]() |
B. Wilfond and L. F. Ross From Genetics to Genomics: Ethics, Policy, and Parental Decision-making J. Pediatr. Psychol., July 1, 2009; 34(6): 639 - 647. [Abstract] [Full Text] [PDF] |
||||
![]() |
F. A. Miller, J. S. Robert, and R. Z. Hayeems Questioning the Consensus: Managing Carrier Status Results Generated by Newborn Screening Am J Public Health, February 1, 2009; 99(2): 210 - 215. [Abstract] [Full Text] [PDF] |
||||
![]() |
L. F. Ross Ethical and Policy Issues in Newborn Screening: Historical, Current, and Future Developments NeoReviews, February 1, 2009; 10(2): e71 - e81. [Abstract] [Full Text] [PDF] |
||||
![]() |
S. M. Wolf, F. P. Lawrenz, C. A. Nelson, J. P. Kahn, M. K. Cho, E. W. Clayton, J. G. Fletcher, M. K. Georgieff, D. Hammerschmidt, K. Hudson, et al. Managing incidental findings in human subjects research: analysis and recommendations. J. Law Med. Ethics, June 1, 2008; 36(2): 219 - 248. [PDF] |
||||
![]() |
D. B. Bailey Jr, D. Skinner, A. M. Davis, I. Whitmarsh, and C. Powell Ethical, Legal, and Social Concerns About Expanded Newborn Screening: Fragile X Syndrome as a Prototype for Emerging Issues Pediatrics, March 1, 2008; 121(3): e693 - e704. [Abstract] [Full Text] [PDF] |
||||
![]() |
N. J. Kerruish, P. L. Campbell-Stokes, A. Gray, T. R. Merriman, S. P. Robertson, and B. J. Taylor Maternal Psychological Reaction to Newborn Genetic Screening for Type 1 Diabetes Pediatrics, August 1, 2007; 120(2): e324 - e335. [Abstract] [Full Text] [PDF] |
||||
![]() |
M. E. Pierpont, C. T. Basson, D. W. Benson Jr, B. D. Gelb, T. M. Giglia, E. Goldmuntz, G. McGee, C. A. Sable, D. Srivastava, and C. L. Webb 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 Circulation, June 12, 2007; 115(23): 3015 - 3038. [Abstract] [Full Text] [PDF] |
||||
![]() |
Journal Watch Pediatrics & Adolescent Medicine Arch. Dis. Child., October 1, 2006; 91(10): 871 - 872. [Full Text] [PDF] |
||||
![]() |
C. I. Kaye and Committee on Genetics Introduction to the Newborn Screening Fact Sheets Pediatrics, September 1, 2006; 118(3): 1304 - 1312. [Abstract] [Full Text] [PDF] |
||||
![]() |
M. J. Hern, T. A. Beery, and D. G. Barry Experiences of College-Age Youths in Families With a Recessive Genetic Condition Journal of Family Nursing, May 1, 2006; 12(2): 119 - 142. [Abstract] [PDF] |
||||
![]() |
C. Strange, M. A. Moseley, Y. Jones, L. Schwarz, L. Xie, and M. L. Brantly Genetic Testing of Minors for Alpha1-Antitrypsin Deficiency Arch Pediatr Adolesc Med, May 1, 2006; 160(5): 531 - 534. [Abstract] [Full Text] [PDF] |
||||
![]() |
T. C. Davis, S. G. Humiston, C. L. Arnold, J. A. Bocchini Jr, P. F. Bass III, E. M. Kennen, A. Bocchini, D. Williams, P. Kyler, and M. Lloyd-Puryear Recommendations for Effective Newborn Screening Communication: Results of Focus Groups With Parents, Providers, and Experts Pediatrics, May 1, 2006; 117(5/S1): S326 - S340. [Abstract] [Full Text] [PDF] |
||||
![]() |
S. D. Grosse, C. A. Boyle, A. Kenneson, M. J. Khoury, and B. S. Wilfond From Public Health Emergency to Public Health Service: The Implications of Evolving Criteria for Newborn Screening Panels Pediatrics, March 1, 2006; 117(3): 923 - 929. [Full Text] [PDF] |
||||
![]() |
M. H. Farrell, A. La Pean, and L. Ladouceur Content of Communication by Pediatric Residents After Newborn Genetic Screening Pediatrics, December 1, 2005; 116(6): 1492 - 1498. [Abstract] [Full Text] [PDF] |
||||
![]() |
A. La Pean and M. H. Farrell Initially Misleading Communication of Carrier Results After Newborn Genetic Screening Pediatrics, December 1, 2005; 116(6): 1499 - 1505. [Abstract] [Full Text] [PDF] |
||||
![]() |
M-C Huang, C-K Lee, S-J Lin, and I-C Lu Parental consent for newborn screening in southern Taiwan J. Med. Ethics, November 1, 2005; 31(11): 621 - 624. [Abstract] [Full Text] [PDF] |
||||
![]() |
C. G. S. Palmer, A. Martinez, Y. Sininger, N. Shapiro, W. W. Grody, and L. A. Schimmenti Prelingual Siblings of Children With GJB2 Hearing Loss: Issues to Consider Arch Otolaryngol Head Neck Surg, November 1, 2005; 131(11): 1020 - 1022. [Full Text] [PDF] |
||||
![]() |
E. Abel, S. D. Horner, D. Tyler, and S. A. Innerarity The Impact of Genetic Information on Policy and Clinical Practice Policy Politics Nursing Practice, February 1, 2005; 6(1): 5 - 14. [Abstract] [PDF] |
||||
![]() |
S. E. Gollust, K. Apse, B. P. Fuller, P. S. Miller, and B. B. Biesecker Community Involvement in Developing Policies for Genetic Testing: Assessing the Interests and Experiences of Individuals Affected by Genetic Conditions Am J Public Health, January 1, 2005; 95(1): 35 - 41. [Abstract] [Full Text] [PDF] |
||||
![]() |
R. E. Ensenauer, V. V. Michels, and S. S. Reinke Genetic Testing: Practical, Ethical, and Counseling Considerations Mayo Clin. Proc., January 1, 2005; 80(1): 63 - 73. [Abstract] [PDF] |
||||
![]() |
E Campbell and L F Ross Attitudes of healthcare professionals and parents regarding genetic testing for violent traits in childhood J. Med. Ethics, December 1, 2004; 30(6): 580 - 586. [Abstract] [Full Text] [PDF] |
||||
![]() |
K. C. Wade and R. Aplenc Genetic Susceptibility to Neonatal Disease NeoReviews, July 1, 2004; 5(7): e275 - e282. [Full Text] [PDF] |
||||
![]() |
J. M. Barker, S. H. Goehrig, K. Barriga, M. Hoffman, R. Slover, G. S. Eisenbarth, J. M. Norris, G. J. Klingensmith, and M. Rewers Clinical Characteristics of Children Diagnosed With Type 1 Diabetes Through Intensive Screening and Follow-Up Diabetes Care, June 1, 2004; 27(6): 1399 - 1404. [Abstract] [Full Text] [PDF] |
||||
![]() |
J. E. Berger and Committee on Medical Liability Consent by Proxy for Nonurgent Pediatric Care Pediatrics, November 1, 2003; 112(5): 1186 - 1195. [Abstract] [Full Text] [PDF] |
||||
![]() |
American Society of Clinical Oncology Policy Statement Update: Genetic Testing for Cancer Susceptibility J. Clin. Oncol., June 15, 2003; 21(12): 2397 - 2406. [Abstract] [Full Text] [PDF] |
||||
![]() |
K. Donovan Predictive Genetic Testing in Children: Who Determines Appropriateness? AAP Grand Rounds, February 1, 2003; 9(2): 21 - 22. [Full Text] [PDF] |
||||
![]() |
M. J. Khoury, L. L. McCabe, and E. R.B. McCabe Population Screening in the Age of Genomic Medicine N. Engl. J. Med., January 2, 2003; 348(1): 50 - 58. [Full Text] [PDF] |
||||
![]() |
L. F. Ross Minimizing Risks: The Ethics of Predictive Diabetes Mellitus Screening Research in Newborns Arch Pediatr Adolesc Med, January 1, 2003; 157(1): 89 - 95. [Abstract] [Full Text] [PDF] |
||||
![]() |
M A W Umans-Eckenhausen, F J Oort, K C M P Ferenschild, J C Defesche, J J P Kastelein, and J C J M de Haes Parental attitude towards genetic testing for familial hypercholesterolaemia in children J. Med. Genet., September 1, 2002; 39(9): e49 - 49. [Full Text] [PDF] |
||||
![]() |
A. Rosen, S. Wallenstein, and M. M. McGovern Attitudes of Pediatric Residents Toward Ethical Issues Associated With Genetic Testing in Children Pediatrics, August 1, 2002; 110(2): 360 - 363. [Abstract] [Full Text] [PDF] |
||||
![]() |
P. J. Gergen, C. J. Macri, and S. Murrillo The Need for Sickle Cell Screening Among Pediatric Latino Immigrants Arch Pediatr Adolesc Med, July 1, 2002; 156(7): 729 - 729. [Full Text] [PDF] |
||||
![]() |
J. G. Twomey Considerations for Policies Regarding Genetic Testing of Children Policy Politics Nursing Practice, May 1, 2002; 3(2): 140 - 148. [Abstract] [PDF] |
||||
![]() |
B. J. Mears Direct-to-Consumer Advertising of Genetic Tests AAP Grand Rounds, January 1, 2002; 7(1): 2 - 3. [Full Text] [PDF] |
||||
![]() |
M. L. Brandi, R. F. Gagel, A. Angeli, J. P. Bilezikian, P. Beck-Peccoz, C. Bordi, B. Conte-Devolx, A. Falchetti, R. G. Gheri, A. Libroia, et al. CONSENSUS: Guidelines for Diagnosis and Therapy of MEN Type 1 and Type 2 J. Clin. Endocrinol. Metab., December 1, 2001; 86(12): 5658 - 5671. [Abstract] [Full Text] [PDF] |
||||
![]() |
J. C. Murray The Unending String Arch Pediatr Adolesc Med, November 1, 2001; 155(11): 1193 - 1194. [Full Text] [PDF] |
||||
![]() |
C. Hart and J. Martin Ethical issues of genetic testing examined in AAP policy statement AAP News, July 1, 2001; 19(1): 17 - 17. [Full Text] [PDF] |
||||






















