Genetic testing of children: Ethical considerations are evolving
Genetic testing of children: Ethical considerations are evolving
Less harm than anticipated
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.
“The ethical principle is constant, but how it is interpreted changes with changes in science and changes in our understanding,” she says. “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.)
The only previous statements that addressed ethical implications of genetic testing of children by U.S. professional organizations were a 1995 statement from the American Society of Human Genetics and the ACMG and a 2001 statement from AAP.3,4 “This report is more comprehensive,” says Ross.
The 2013 report addresses genetic testing in adoption, histocompatibility testing for stem cell transplantation, pharmacogenomics, and direct-to-consumer testing. Both the old and new reports emphasize the need for greater education of general pediatricians in genetics.
Genetic testing of minors is more common than in any other group, with newborn screening done on virtually 100% of newborns. “There is a need for greater education of parents regarding the benefits,” she says. “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. “There is less genetic testing of older children, but it will increase in importance as our knowledge expands,” says Ross.
Informed consent
The AAP’s 2001 statement emphasized concerns about the potential harms of predictive genetic testing. “In the intervening decades, some empirical data have emerged,” says Ross. “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
However, these studies disproportionately represent white individuals of higher socioeconomic status, and the effects on lower-educated and underserved populations is largely unknown, acknowledges Ross. 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.
• 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.
• 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.
Data show that adults have difficulty understanding the full implications of genetic information, and they often involve other adults in their decision making. “Permitting an adolescent to make similar choices without the benefit of parental guidance is problematic,” says Ross.
• The use of direct-to-consumer and home-kit genetic testing of children is strongly discouraged due to risks of inaccurate results, inaccurate interpretations, and altered family dynamics.
“This is not supposed to occur, as you are supposed to only do direct-to-consumer testing on adults. But it is happening, and it will continue,” notes Ross.
• Ideally, health care providers and parents should address disclosure issues before predictive testing is done.
“In general, there is support for disclosure to the child done in an age-appropriate manner at appropriate teaching moments,” says Ross.
References
1. American Academy of Pediatrics Committee on Bioethics, Committee on Genetics and the American College of Medical Genetics and Genomics Social, Ethical and Legal Issues Committee. Policy Statement: Ethical and policy issues in genetic testing and screening of children. Pediatrics 2013; 131(3):620-622.
2. Ross LF, Saal HM, David KL, et al. Technical report: Ethical and policy issues in genetic testing and screening of children. Genetics in Medicine 2013;15:234-245.
3. American Society of Human Genetics (ASHG) Board of Directors, American College of Medical Genetics (ACMG) Board of Directors. Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet 1995;57:1233–1241.
4. American Academy of Pediatrics (AAP), Committee on Bioethics. Ethical issues with genetic testing in pediatrics. Pediatrics 2001;107(6):1451-1455.
5. Rew L, Mackert M, Bonevac D. A systematic review of literature about the genetic testing of adolescents. Journal for Specialists in Pediatric Nursing 2009;14(4):284–294.
Source
• Lainie Friedman Ross, MD, PhD, Department of Pediatrics, University of Chicago. Phone: (773) 702-6323. E-mail: [email protected].
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.Subscribe Now for Access
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