December 8, 2014
What Do New Parents Really Think Of Genome Testing For Newborns?
Eric Hopton for redOrbit.com - Your Universe Online
The study was led by researchers at Brigham and Women's Hospital (BWH) and Boston Children's Hospital.
Although there are existing standard newborn genetic screening procedures already available, the next-generation of whole-exome and genome sequencing is being developed. Such testing could offer a valuable range of health information for newborns but would clearly need parental consent.
Robert C. Green, MD, MPH, a geneticist and researcher at BWH and Harvard Medical School and senior author of the study, said, “Several other studies have measured parents' interest in newborn genomic screening, but none focused on new parents in the first 48 hours. Since this is when genomic testing would be of the greatest value, it is especially important to study parents' attitudes immediately post-partum.”
514 parents at BHW’s “well baby” nursery took part in the survey. The participating parents were given information about genomic testing and its implications for the baby’s health before completing the questionnaire.
Of the parents who took part, 82.7 percent expressed some interest in genomic testing; 36 percent reported that they were “somewhat” interested; 28 percent were “very” interested; while 18 percent said they were “extremely” interested. The age of the parents, their, gender, race, ethnicity, level of education, family history of genetic disease, had no noticeable impact on their level of interest and neither did the fact that the infant was a first-born child.
However, where parents were experiencing problems with the health of their baby, interest in genomic testing was found to be lower.
The researchers describe the existing “state-mandated newborn genetic screening” (NBS) program as one of the most established and successful public health programs in the world. The study is the first to actually investigate whether asking parents about their interest in newborn genomic testing would cause them to reject NBS screening. The researchers were concerned about the potential impact on NBS but their fears proved unfounded. Over 500 parents were surveyed but, according to the research team, none of them questioned or rejected NBS.
“If even one parent had rejected it, that would have been a problem,” said Susan Waisbren, PhD, lead author of the study and a psychologist and researcher in the Division of Genetics and Genomics at Boston Children's and Harvard Medical School.
All the parents were surveyed separately and the results showed that most of the couples, around 75 percent, had similar levels of interest in newborn genomic testing which, the team believes, indicates that both parents should be involved in any decisions and discussions about newborn genomic testing.
“Parents' strong interest in genomic screening for their newborns, as demonstrated by this study, underscores the importance of further research exploring the public health impacts of actually providing this testing,” said Green, “particularly as it continues to become less expensive and more widely available.”
This research was funded by Brigham and Women's Biomedical Research Institute seed funding, the Galactosemia Foundation (S.E.W.), the National PKU Alliance (S.E.W.), and National Institutes of Health grants HD077671, HG006500, HG005092, and HG006615.
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