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.

To better understand parental perceptions of GS in a pediatric cancer setting, our team interviewed parents, read the article published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMG), who have sat in that uncomfortable seat in the doctor’s office and who agreed to have their child undergo GS as part of the NIH-funded BASIC3 study.  Not surprisingly, their role as a biological parent and as a child’s caretaker influenced the way our participants viewed this technology.

Many parents we spoke with said they felt a responsibility to try GS so they could feel confident they explored all possible options to help their child.  “I just wanted to be sure we did everything,” one mother said.

Parents also viewed GS as an opportunity to address concerns that they had done something to cause their child’s disease.  And interestingly, most reported feeling relief after getting their results – whether the tests revealed a genetic explanation for their child’s cancer or not.  Families whose results did not suggest a known cancer-causing gene had been passed down from parent to child were happy to have that information.  One of these parents reported that “it was a relief….to hear them actually say it…so that made me feel—feel really good, you know, not to be blamed.”  Others whose results indicated that their child’s tumor was caused by a genetic change in a cell in the body felt reassured that they had not made decisions (e.g. about what to allow their child to eat or to do) that caused their child’s cancer. For example, a mother described relief from “knowing that there was nothing that we did wrong. It was not us. We weren’t really parents that did anything wrong or whatever.”  None of the parents we interviewed had gotten GS information revealing that the cancer-causing gene that was identified had been passed down by a parent.  Understanding the experience of these families would be necessary to paint a complete picture of how GS affects families of children with serious illnesses.

It is important to note that parents were told that the GS results could not definitively show what did or did not cause a child’s tumor because not all types of changes are detected by this testing.  Even so, parents interpreted the results as relieving them of culpability for the disease and therefore as evidence that they had not failed to fulfill their parental obligations.

Looking at the possibility of participating in GS through the eyes of a parent of a child with cancer makes it evident that parents may view this technology as more than a tool for determining the best treatment option for their child. They may see it as a way of fulfilling their obligations of parenthood and use it to seek reassurance that they haven’t failed to do so in the past.  It isn’t hard to imagine how parents may make a connection between undergoing GS and being a “good parent,” raising fascinating questions about how this technology will – and should – be used in the future.

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