Rew L, Mackert M, Bonevac D. A systematic review of literature about the genetic testing of adolescents. /T1_0 1 Tf AMERICAN ACADEMY OF PEDIATRICS Committee on Bioethics Ethical Issues With Genetic Testing in Pediatrics ABSTRACT. S endstream • Testing for conditions that present in adulthood is discouraged, although it may be permitted with appropriate counseling and the minor’s assent, depending on the circumstance. endobj The roles of predictive testing for adult-onset conditions, the management of secondary findings and the role of informed consent for newborn screening remain controversial. Papaz T, Liston E, Zahavich L, Stavropoulos DJ, Jobling RK, Kim RH, Reuter M, Miron A, Oechslin E, Mondal T, Bergin L, Smythe JF, Altamirano-Diaz L, Lougheed J, Yao R, Akinrinade O, Breckpot J, Mital S. BMC Med Genomics. -22.44401 0 Td Copyright \251 2001)Tj 2001-05-10T15:31:20Z 40 0 obj The following solution discusses a current ethical issue in the field of health: Genetic Testing in Pediatrics. <>/Font<>/ProcSet[/PDF/Text]>>/Type/Page>> COVID-19 is an emerging, rapidly evolving situation. The Pediatric Cell Atlas: Defining the Growth Phase of Human Development at Single-Cell Resolution. -9.0135 1.00001 Td INC Source PEDIATRICS, Vol 107, N° 6, 2001, pages 1451-1455, 40 réf. <>/Font<>/ProcSet[/PDF/Text]>>/Type/Page>> 0 0 m endobj Genetic Testing in Children and Adolescents. But it is happening, and it will continue,” notes Ross. 4. Return of genetic and genomic research findings: experience of a pediatric biorepository. LІ p`���� �AC� �b Testing of children presents unique issues in counseling and consent. Ethical issues with genetic testing in pediatrics. “The growing literature on the psychosocial and clinical effects of such testing and screening can help inform best practices.”, A 2013 joint policy statement from the American Academy of Pediatrics (AAP) and the American College of Medical Genetics and Genomics (ACMG) provides ethical justification and empirical data in support of proposed policy recommendations regarding genetic testing and screening in a myriad of settings.1,2 (To view the policy statement, go to http://bit.ly/16NB4kd.). HHS The AAP’s 2001 statement emphasized concerns about the potential harms of predictive genetic testing. 12 0 0 12 218.50397 544.99991 Tm AU - Moon, Margaret R. PY - 2000/1/1. uuid:a50573cd-1dd1-11b2-0a00-d60827fd5800 endobj “We need to ensure that they are aware of the screening, and what to do if their child receives a positive screen.” Most other genetic testing is performed on children with multiple anomalies, autism spectrum disorders, and intellectual disabilities. The essential reason for the research is to develop more effective strategies for disease prevention and treatment. E-mail: lross@uchicago.edu. American Academy of Pediatrics Committee on Bioethics, Committee on Genetics; Ameri-canCollegeofMedicalGenetics Social,Ethical and Legal Issues Committee. “In general, there is support for disclosure to the child done in an age-appropriate manner at appropriate teaching moments,” says Ross. 2008 Jun;20(2):233-7, vii. doi: 10.1016/j.ccell.2008.01.005. Policy Statement: Ethical and policy issues in genetic testing and screening of children. NLM Personal genome testing: test characteristics to clarify the discourse on ethical, legal and societal issues. NIH (http://pediatrics.aappublications.org/content/107/6/1451)Tj ReliasMedia_AR@reliasmedia.com, Do Not Sell My Personal Information Privacy Policy Terms of Use Contact Us Reprints Group Sales, For DSR inquiries or complaints, please reach out to Wes Vaux, Data Privacy Officer, DPO@relias.com, Design, CMS, Hosting & Web Development :: ePublishing, Ethics at forefront of predictive genetic testing in children, Cystic fibrosis patients face ethical issues with direct-to-consumer genetic testing. (2001;107;1451)Tj Advances in genetic research promise great strides in the diagnosis and treatment of many childhood diseases. You must have JavaScript enabled to enjoy a limited number of articles over the next 360 days. Get the latest research from NIH: https://www.nih.gov/coronavirus. Ross LF, Saal HM, David KL, et al. Genetics in Medicine 2013;15:234-245. 2013 Sep;50(9):823-7. doi: 10.1007/s13312-013-0228-4. A monthly publication, it)Tj (the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 6\ 0143. (The online version of this article, along with updated information and s\ ervices, is)Tj endobj application/pdf • Ideally, health care providers and parents should address disclosure issues before predictive testing is done. The growing literature on the psychosocial and clinical effects of such testing and screening can help inform best … The 2013 report addresses genetic testing in adoption, histocompatibility testing for stem cell transplantation, pharmacogenomics, and direct-to-consumer testing. endobj “There is a need for greater education of parents regarding the benefits,” she says. Decisions about whether to offer genetic testing and screening to children should be driven by what is in the best interest of the child, emphasizes Lainie Friedman Ross, MD, PhD, Carolyn and Matthew Bucksbaum professor of clinical ethics and associate director of the MacLean Center for Clinical Medical Ethics in Chicago, IL. <>/Filter/FlateDecode/Height 388/Length 137508/Name/X/Subtype/Image/Type/XObject/Width 1775>>stream Statements about genetic testing of children in the United States written in the past 2 decades need to be updated to consider the ethical issues arising with new technologies and expanded uses of genetic testing and screening. S C Nurse (1994). BT American Society of Human Genetics (ASHG) Board of Directors, American College of Medical Genetics (ACMG) Board of Directors. q • Health care providers should be cautious about providing testing to minors without the collaboration of their parents, as results may disclose information about parental status, thus compromising parental privacy. 64 0 obj 2020-11-26T02:05:31-08:00 Several professional organizations in the fields of genetics and pediatrics have published new guidance on the ethical, legal, and policy issues relevant to genetic testing in children. Ethical issues in predictive pediatric genetic testing. Patients could be unduly influenced, Some benefit, but at a high cost? Journal for Specialists in Pediatric Nursing 2009;14(4):284–294. <>/Font<>/ProcSet[/PDF/Text]>>/Type/Page>> However, emerging genetic technol-ogy often enables testing and screening before the devel-opment of definitive treatment or preventive measures. 2013 Jul;27(6):348-55. doi: 10.1111/bioe.12030. Taylor DM, Aronow BJ, Tan K, Bernt K, Salomonis N, Greene CS, Frolova A, Henrickson SE, Wells A, Pei L, Jaiswal JK, Whitsett J, Hamilton KE, MacParland SA, Kelsen J, Heuckeroth RO, Potter SS, Vella LA, Terry NA, Ghanem LR, Kennedy BC, Helbig I, Sullivan KE, Castelo-Soccio L, Kreigstein A, Herse F, Nawijn MC, Koppelman GH, Haendel M, Harris NL, Rokita JL, Zhang Y, Regev A, Rozenblatt-Rosen O, Rood JE, Tickle TL, Vento-Tormo R, Alimohamed S, Lek M, Mar JC, Loomes KM, Barrett DM, Uapinyoying P, Beggs AH, Agrawal PB, Chen YW, Muir AB, Garmire LX, Snapper SB, Nazarian J, Seeholzer SH, Fazelinia H, Singh LN, Faryabi RB, Raman P, Dawany N, Xie HM, Devkota B, Diskin SJ, Anderson SA, Rappaport EF, Peranteau W, Wikenheiser-Brokamp KA, Teichmann S, Wallace D, Peng T, Ding YY, Kim MS, Xing Y, Kong SW, Bönnemann CG, Mandl KD, White PS. 0.34699 1.00001 Td Genetics in Medicine. AMERICAN ACADEMY OF PEDIATRICS Committee on Bioethics Ethical Issues With Genetic Testing in Pediatrics ABSTRACT. Ethical and policy issues in genetic testing and screening of children. 1. 1, 2 The growing literature on the psychosocial and clinical effects of such testing and screening can help inform us about best practices. Ethical Issues With Genetic Testing in Pediatrics: Genetic testing is the analysis of chromosomes, proteins and certain metabolites in order to detct heritable diseases -related genotypes for clinical purposes.Adavances in genetic research promise more progress in the diagnosis and treatment of many childhood diseases. XPP (by the American Academy of Pediatrics. Collectivité auteur Committee on Bioethics. “They suggest less harm than anticipated, with considerable resiliency and ability of minors to successfully incorporate these risks into their self-concepts and life plans.”5. Ethical issues with genetic testing in pediatrics. Genetic testing: Should children be tested? )Tj Here are some recommendations included in the 2013 statement: • Testing for conditions that present in childhood is permitted, although when feasible, the child’s assent should be obtained.
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