The Ethics of Genetic Testing in Children

Picture this: You are a Pediatrician and a woman enters your practice with her newborn baby. Her family has a history of genetic conditions—maybe it’s inflammatory bowel disease, maybe it’s a neurological issue, maybe it’s a form of cancer.  Now she wants to know if her baby will get it, too.  What do you do?

If you sequence her child’s genome, there is a chance you’ll have good news to report, but there is a chance that the mother’s fears will be realized, and that knowledge could alter both their lives in inconceivable ways. Perhaps you’ll find that the child is at risk for a disease other than the one you were investigating. Are there effective treatment options available? Will there ever be? Should the child be told? Are you obligated to tell the child no matter the mother’s opinion? 

Genetic testing is cheaper, more accurate, and increasingly applicable to more diseases and conditions than ever before, but its use is not without ethical and practical concerns. These concerns are more prevalent in children since parents and providers find themselves making decisions on behalf of minor patients who may not fully understand the implications of the tests they are taking, or even the conditions they are testing. An article coauthored by Dr. Wendy K. Chung (Pediatrician and director of the Clinical Genetics Program at Columbia) and published in Pediatrics seeks to provide guidelines for pediatricians dealing with these questions. 

In “Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice.” Dr. Chung and her coauthors outline 3 basic concepts making up the “ethical framework” of a Pediatrician’s treatment in these cases:

1) The best interests of the child (from both a medical and psychosocial perspective) 

2) The interests and decisions of the parent/surrogate

3) Pediatric assent (the involvement of the child in the decision-making process.  This applies mainly to adolescents who are developmentally capable of making adult-like decisions.)

Genetic testing is powerful but the implications can be complex, so Dr. Chung advocates testing for “News You Can Use” in children, in which the information from the genetic test is needed now to keep that patient healthy. Pediatricians also must judge what sort of psychological harm a genetic diagnosis might impose upon the patient and the family, whether the cause of distress is the knowing or the not knowing, and whether treatment and long-term management can make a significant difference in the lives of the patient and family. 

 For more on the ethics of genetic testing, check out the article, as well as this video of Dr. Chung at TEDMED: 

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