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Parents interested in whole genome sequencing for themselves, children
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More than half of parents who participated in a nationally representative study indicated they would be interested in whole genome sequencing for themselves, as well as for their youngest children.
The findings were published online ahead of print in the journal Public Health Genomics.
Nationally representative study
The study, which pooled data on a random sample of adults from a probability-based nationally representative online panel, found that 61.8% of parents surveyed were “somewhat” interested in whole genome sequencing for themselves and 57.8% were interested in the test for their youngest children.
All study participants were provided basic information about whole genome sequencing. Researchers then surveyed participants about their interest in whole genome sequencing for themselves; parents were additionally asked about their interest in the procedure for their children.
Researchers reported a 62% response rate.
More than half (58.6%) of the total population was interested in whole genome sequencing for themselves, and 84.7% of parents were equally interested in whole genome sequencing for themselves and for their youngest children, according to the study results.
Specifically, mothers and parents whose youngest children had two or more health conditions had significantly more interest in whole genome sequencing for themselves and for their youngest children. Conversely, participants with conservative political ideologies had significantly less interest.
“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,” Beth Tarini, MD, MS, assistant professor of pediatrics at the University of Michigan’s C.S. Mott Children’s Hospital, told HemOnc Today. “As genome sequencing becomes faster and cheaper, we expect the technology to become used more frequently in clinics and the private market. Our study will help physicians understand how parents consider genomic sequencing for their children.”
Collaborative initiative
In an effort to evaluate and improve on genetic testing in Michigan, Blue Cross Blue Shield of Michigan and the University of Michigan Health System collaborated on the Genetic Testing Resource and Quality Consortium (GTRQC).
“There has been a dramatic increase in the number of genetic assays available to patients and providers over the last several years,” Scott Owens, MD, director of the division of quality and health improvement in the department of pathology at the University of Michigan Health System, told HemOnc Today.
Although some genetic assays, such as BRCA testing — aimed at identifying patients and families at risk for breast and other cancers — are well-developed, there may be differences in how the test is used and in how patients are treated once they know the results, according to Owens.
“For other tests, there are no clear guidelines, and for still others, evidence for and against their clinical usefulness is still being gathered, even as they are being actively marketed to patients and providers,” he said. “The GTRQC has the overall goal of assessing the analytical validity, clinical validity, clinical utility and ethical issues of genetic tests with the aim of identifying best practices in their use.”
Owens said the GTRQC will work to identify how and where genetic tests will be ordered and performed throughout Michigan and build a consortium of laboratories, clinical physicians and allied health professionals who can help to identify, optimize and create guidelines for their use.
“While this will be an ongoing process that will ultimately take years to build, we will begin with the BRCA test based on its current level of use and existing guidelines. In this way, we can leverage existing information to help us create and optimize our consortium. Although focused on patients, families and providers in Michigan, the guidelines and practices that the GTRQC identifies should be widely translatable throughout the practice of medicine.” – by Jennifer Southall
For more information:
Beth Tarini, MD, MS, can be reached at The University of Michigan’s C.S. Mott Children’s Hospital, 300 N. Ingalls St., Room 6D19, Ann Arbor, MI 48109; email: btarini@umich.edu.
Scott R. Owens, MD, can be reached at Genetic Testing Resource and Quality Consortium, University of Michigan, M5224 Medical Science I, 1301 Catherine St., Ann Arbor, MI 48109.
Disclosure: Owens reports receiving a portion of his salary through a grant from Blue Cross Blue Shield of Michigan as part of the company’s participation in this collaborative. Tarini reports no relevant financial disclosures. Please see the full study for a list of all other authors’ relevant financial disclosures.
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