Bioethicists have raised many concerns about the possible negative effects of giving genomic information to patients and families. A recent study’s findings were reassuring.1
“We were surprised to hear parents report overwhelmingly positive perspectives on their experience with genomic sequencing,” says Janet Malek, PhD, the study’s lead author and an associate professor at Baylor College of Medicine’s Center for Medical Ethics and Health Policy in Houston.
Researchers conducted interviews with 64 parents of pediatric cancer patients who underwent exome testing (as part of the larger Baylor Advancing Sequencing in Childhood Cancer Care [BASIC3] study) at baseline, one to eight months after results disclosure, and one year after disclosure. “The motivation for the BASIC3 study as a whole was to gain a better understanding of the impact of routinely including genomic sequencing in the care of children with cancer,” Malek explains.
The study focused on one specific population with a special set of circumstances. Nonetheless, says Malek, “our findings suggest that assumptions about how people react to genomic information need to be tested empirically.”
Before receiving genomic information, some parents expressed worry that they had passed on a cancer-causing gene or had made parenting decisions that caused the disease. After receiving their child’s exome sequencing results, many parents reported feeling relieved of guilt or worry, and felt they had fulfilled parental duties.
Parents of children with serious illnesses may feel obligated to accept genomic sequencing if it is offered to them. “Ethicists and clinicians should factor that consideration into decisions about whether to recommend such testing,” Malek advises.
Also noteworthy: The fact that parents found the information valuable regardless of the results returned. “This should reassure ethicists and clinicians that offering genomic sequencing, under some circumstances, is less ethically fraught than may have been previously thought,” Malek says.
- Malek J, Pereira S, Robinson JO, et al. Responsibility, culpability, and parental views on genomic testing for seriously ill children. Genet Med 2019; Jun 12. doi: 10.1038/s41436-019-0570-6. [Epub ahead of print].