New study from Baylor College of Medicine concludes that families do not necessarily suffer stress when infants undergo genetic tests
New research from Baylor College of Medicine may allay some fears that hospitals offering genetic screening for newborns are causing more harm than good. Genetic screening for infants has been a contentious subject. Identifying an increased likelihood of disease in a healthy child could theoretically cause unnecessary stress for the parents, without providing helpful information, and raise ethical concerns.
The research was conducted as part of the BabySeq Project, a large genomic sequencing initiative examining the risks and benefits of providing comprehensive genetic sequencing for infants.
Perspectives on Risks of Infant Genomic Screening
While proponents of infant genetic testing view the benefits as optimistic—healthcare providers can treat young patients quicker and set up plans earlier to deal with longer-term conditions—others have expressed concerns about the ethical implications of letting families know their kids may have genetic indications for certain diseases later in life.
A new study published in JAMA Pediatrics, however, provides some hope that genetic testing for babies doesn’t have to mean long-term stress for parents and families.
The study found that providing genetic screening to newborns and infants did not negatively impact the patients’ families, even when risks of disease or carrier status was found and disclosed.
“Prior studies suggest that adults don’t usually experience negative psychological impact when given genomic information about themselves; but how this impacts parents and the family unit when the information is about their newborns hadn’t been previously explored,” said Stacey Pereira, PhD, in a recent statement. “We are proud that our work helps provide a more complete understanding of the impact of newborn genome sequencing.” Pereira is assistant professor at the Center for Medical Ethics and Health Policy at Baylor and co-first author of the study in JAMA Pediatrics.
This research sheds light on the potential impact that the BabySeq Project could have on families. “This study is unique in that it looks, in part, at genetic risk for seemingly healthy babies,” said Amy McGuire, JD, PhD, co-principal investigator of the BabySeq Project, Leon Jaworski Professor of Biomedical Ethics, and director of the Center for Medical Ethics and Health Policy at Baylor. “Some are concerned that parents who know that their seemingly healthy child is at risk for disease later in childhood or adulthood will experience more anxiety or alter how they relate to their child.”
McGuire is encouraged by the recent findings indicating that the screening was safe from a psychological perspective. “The lack of distress on the family unit is an encouraging sign as we continue to explore the potential risks and benefits, as well as ethical and equity questions related to preventive sequencing of apparently healthy people,” she explained.
Implications for Hospitals
This finding provides encouragement to the continued research efforts of BabySeq investigators.
“We have now shown that this information can be medically beneficial through early intervention and is not disruptive to the parent-infant relationship, and our ongoing analysis is measuring economic effects of genome sequencing,” said Robert C. Green, MD, MPH, principal investigator of BabySeq, professor of medicine at Harvard Medical School, and medical geneticist at Brigham and Women’s Hospital. “This type of research is critical to determine best practices for preventive genomic healthcare throughout the lifespan.”
As genetic screening for infants becomes more prevalent in medical care, hospital leaders will be encouraged to know that potential negative psychological effects of genetic screening may not be an automatic result. This knowledge can empower hospitals to safely institute their own childhood genetic screening programs and benefit from offering these advanced services.