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Study Finds that Parents More Interested in Knowing Kids' Genomic Health Risks Than Not

NEW YORK (GenomeWeb) – Most parents said they would be interested in whole-genome sequencing (WGS) not only for themselves but for their children as well, according to a new study in Public Health Genomics.

As genome sequencing becomes faster, cheaper, and more widely available, use of the technology is anticipated to become more prevalent, even as questions remain about how to act on the information it generates and how to keep it private. For the study, the researchers "wanted to know what kind of factors influenced patient demand for this test, especially among parents," Beth Tarini, an assistant professor of pediatrics at the University of Michigan's C.S. Mott Children's Hospital, and the study's senior author, said in a statement.

Tarini's previous research has suggested that parents in theUSdo not show a widespread knee-jerk reluctance against having their children's genomic data used in research, but having that data stored is another issue, especially when it comes to adult diseases that might not manifest for decades.

To gauge interest in WGS, the researchers surveyed a random, nationally representative sample of 2,144 adults from an online panel. After giving the respondents basic information about whole-genome sequencing, the researchers asked them whether they were "definitely interested," "somewhat interested," "not interested," or "definitely not interested" in whole- genome sequencing for themselves. Those who were parents were also asked about their interest in WGS for their kids.

Among both parents and non-parents, 58.6 percent of the survey respondents were interested in WGS for themselves. Among parents, 61.8 percent were interested in WGS for themselves and 57.8 percent were interested in WGS for their youngest children.

"Particularly fascinating was that parents' interest for having predictive genetic testing done for themselves reflected their interest in testing their children too — it appears to be a global decision for the family," Tarini said. Whatever their interest level in WGS, 84.7 percent showed an identical interest level in WGS for both themselves and their youngest children.

Mothers as a group and parents whose youngest children had more than two health conditions had significantly more interest in predictive genetic testing for themselves and their youngest children. People planning to have a child in the next five years generally showed greater interest in genome sequencing, but not if they already had children. Those with conservative political ideologies had considerably less interest, the authors said.

"We want our patients to be active participants in their health; however, the value of genome sequencing in helping individuals understand their disease risks is still controversial, especially for children," lead author Daniel Dodson, a University of Michigan medical student, said.

He and the authors wrote that they hoped their data could serve as a starting point for future inquiries into the reasons behind the differing interest levels in whole-genome sequencing.