graphic of DNA fingerprinting

Responsibility, culpability, and parental views on genomic testing for seriously ill children

Janet Malek, PhD
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX

Imagine being a parent and finding out your child is seriously ill.  Imagine how it feels to sit in a chair in the doctor’s office and hear the news that your child has cancer.  Imagine the worry and guilt you might feel and how these thoughts and emotions might shape your reactions to whatever comes next.

Being a parent comes with a special set of obligations to protect and promote the well-being of your child. A cancer diagnosis puts those obligations front and center, making it impossible to repress questions about what you could have done differently and what you can do to help your child moving forward.

Enter genome-scale sequencing (GS).  Both sequencing of blood – sometimes called germline sequencing (to find gene changes that the child was born with and that might be passed from parent to child) as well as tumor sequencing (to find gene changes that happen randomly in the cells of the body which may cause the tumor to develop) are being used more and more often in clinical settings.  The idea is that this genetic information will help doctors discover what caused a patient’s condition and give clues about how to treat it, even for cancer.  Parents are increasingly be given the option to have their child undergo GS as the technology becomes less expensive and more useful.

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