Parents show interest in predictive genetic testing for children even when a disease has no treatment
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(HealthNewsDigest.com) – ANN ARBOR, Mich. – Companies can now swab a cheek and scan a person’s genes to see if there is a risk of developing a number of diseases, some of which may not currently be treatable. While such companies have traditionally marketed genetic testing to adults, some offer parents the option of testing their children.
In a national survey of parents, Beth A. Tarini, M.D., M.S., assistant professor of pediatrics at the University of Michigan Medical School, and her colleagues, found that more than one-third of parents were interested in predictive genetic testing for their children for a disease for which no treatment exists. Tarini also found that more than one-fourth of parents were consistently interested in predictive genetic testing for their children, regardless of how severe the disease symptoms or whether the disease developed in childhood or adulthood. Predictive genetic testing informs individuals of their risk of future disease based on an analysis of their genetic makeup.
The study appears in this week’s online edition of Pediatrics and in the printed September 2009 edition.
The medical establishment recommends against predictive genetic testing for children for untreatable diseases partially because of concerns about the potential psychological harms involved with knowing that a child is at risk for a disease for which there is currently no treatment. Advocates of genetic testing, particularly in cases where there is no treatment or cure, argue that genetic testing will help prepare them for the onset of the illness and watch for research trials they can take part in.
The findings have important implications because parents now have the ability to access genetic testing through private companies that advertise via the Internet. Given these findings, it is plausible that parents might opt for genetic screening strategies that the medical establishment does not recommend, such as for diseases including Parkinson’s disease that occurs in adulthood and cannot be prevented.
In addition, if parents endorse testing in these extreme circumstances, then they may be equally or more likely to endorse predictive genetic testing when treatments or preventions exist (such as for type 2 diabetes or heart disease), which represents the majority of predictive genetic tests available via the Internet. “Physicians are no longer the gatekeepers for genetic testing,” Tarini says. “As physicians, we need to be proactive in discussing the risks and benefits of this testing with parents so that they can make informed decisions.”
Methodology: Researchers conducted a nationally representative Internet-based survey of parents. Parents received two vignettes describing hypothetical diseases without treatments. Parents were asked to report their interest in predictive genetic testing for their children based on the vignettes. A total of 1,342 parents participated.
Additional authors: Dianne Singer, M.P.H., Sarah Clark, M.P.H., and Matthew M. Davis, M.D., MAPP, all from U-M
Reference: Pediatrics, Vol. 124, No. 3, September 2009. DOI:10.1542
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