Although the pediatric community has gone on record as, at best, unenthusiastic about genetically testing children for their predisposition towards adult-onset diseases, parents once again have indicated a fair amount of support for the notion.
A recent issue of Pediatrics published the results of a survey that gauged the views of 219 parents on testing their children for their genetic susceptibiity to eight conditions that generally don't develop until adulthood: three types of cancer, heart disease, Type 2 diabetes, osteoporosis, high blood pressure and high cholesterol.
On a scale of 1 to 7, the parents registered a mean score of 4.3 (SD=1.9). The study's authors characterized their subjects as "moderately willing" to test their children for genes that would modestly hike their odds of developing the conditions listed above.
Mothers overall were more supportive of testing than were fathers. Also, those most enthusiastic about "multiplex" genetic testing for their children were those who indicated that they:
- would change their child's lifestyle to optimize health
- wanted to learn about how genes and behaviors impact health
- thought they could easily learn the science of genetics
- expected to feel reassured by news about reduced risks of disease
- would take such a test themselves
A few other studies have found a fair amount of interest among parents in testing their children for genes predisposing them to adult-onset diseases.
A survey published in Genetics in Medicine in 2010 found that 87% of parents with melanoma said they would favor genetic testing of their children for genes putting them at greater risk for melanoma.
The American Journal of Medical Genetics in 2008 published a survey of 53 parents with the BRCA gene, along with 22 of their adult offspring. Forty percent of that pool supported genetic testing of minors for the BRCA gene, with half in favor only under certain circumstances.
Just over half - 53% - of a nationally-representative sample of 1,461 parents questioned in 2010 for the C.S. Mott Children's Hospital said they were "very or somewhat interested" in unspecified genetic testing of their children.
The authors of the latest Pediatrics study voiced concern about the parents' enthusiasm for genetic testing of their children.
"Parents in this study more readily anticipated the positives of testing versus its negatives, and those holding the most favorable attitudes toward testing were also the most willing to have their child tested. This could leave parents unprepared and likely to experience regret," they wrote.
While it's been suggested that genetic findings in children could motivate them and their families to adopt healthier eating and exercise habits, the medical community largely has been circumspect about such testing. Many physicians and researchers have expressed concern that testing may generate worry in children and their parents, and then leave them with no constructive way to act on the information.
Stephen Kingsmore, who directs the Center for Pediatric Genomic Medicine at Children's Mercy Hospital in Kansas City, Mo., said, "Whether preventive or ameliorative lifestyle changes should be recommended, or are of utility, has never been tested to my knowledge....(Genetic) testing is premature until we know how to interpret such information.
"The potential harms of such testing are a concern. While the authors did explore this in modest detail, it's always about the balance of harms and benefits, and I am unaware of data in support of benefits."
Given the availability of direct-to-consumer genetic tests and the apparent interest in them, pediatricians soon may need to help their patient families weigh the benefits and harms of this complex technology that is so fraught with ethical and psycho-social repercussions.