Teens Opt In to Learning About Incidental Genetic Findings

Neil Osterweil

October 16, 2015

BALTIMORE — The majority of teenagers say they would want to know about incidental findings discovered on genetic testing, despite the lack of medical interventions for their age group, results from a new survey suggest.

"The most compelling arguments for kids wanting to know was that it would help them to plan for their futures," said lead investigator Sophia Bous Hufnagel, MD, from George Washington University in Washington, DC.

And "whether they wanted to know or not, they still felt that planning for the future was an important benefit of genetic testing," she told Medscape Medical News here at the American Society of Human Genetics 2015.

The study involved 282 adolescents 12 to 18 years of age from three public schools in Cincinnati. The investigators gave a short presentation on genetic screening, and then asked the students to complete a multiple-choice questionnaire about the disclosure of incidental findings and their reasons for their choices.

In all, 83% of the students said they would want to know about nonactionable results, such as mutations in BRCA1 and BRCA2 genes that significantly increase the risk for breast and ovarian cancers.

Of those who wanted to know their potential genetic destinies, 38% said their primary reason was to plan for the future in regard to reproductive choices, education, careers, and relationships.

Of those who did not want to know about incidental findings, the most common rationale was that they did not want to cause stress in their families.

Nearly two-thirds of those surveyed said that they should be allowed to make the disclosure decision for themselves (19%) or with their parents (53%). A similar percentage said that children younger than 12 years should have access to incidental findings.

Children younger than 13 years were significantly less likely than older participants to want to know the results (55% vs 87%, P <. 0001).

There were no significant differences in preference by sex, race, or socioeconomic background.

Genetics Education Starts Early

Adolescents today are far more savvy about genetics than previous generations, Dr Hufnagel explained.

"Kids these days are way more aware of the implications of genetic testing than any of us were when we were growing up," she said. "I didn't start learning about this until my senior year of high school, and now these kids are exposed to it in elementary school."

Adults who undergo genetic counseling have the right to choose for themselves how much they want to know about both actionable and nonactionable findings. But for teenagers, genetic information is filtered through the adults who control the information.

Some adults argue, "let kids be kids," free from worry about a potential future medical problem they can't do anything about anyway, said Dr Hufnagel.

There is a certain wisdom in this practice, said Kelly Metcalfe, RN, PhD, from the Lawrence S. Bloomberg Faculty of Nursing at the University of Toronto, who was not involved in the study.

"I work in the breast cancer world, and we don't offer testing to anybody under the age of 18, even when we're doing multigene panels, simply because there isn't anything we can do," she told Medscape Medical News. "If we do identify a 16-year-old, for instance, with a BRCA1 or BRCA2 mutation, there's nothing we're going to do differently."

She acknowledged that occasionally a young patient will push for genetic testing, but she and her colleagues do their best to discourage it.

The combination of multigene panels and the ever-decreasing cost of sequencing is changing the landscape of genetic testing, and that has implications for the genetic counseling of teens and their families, Dr Metcalfe explained.

"Full genome sequencing is another whole kettle of fish. We're not just talking about knowing that you're from a high-risk family where there are a lot of cancers; we're now talking about learning things about Alzheimer's, and multiple sclerosis, and cardiac disease. I think it's a lot for a teenager to take on," she said.

Dr Hufnagel conducted the study during her fellowship at the University of Cincinnati, which provided support. Dr Metcalfe has disclosed no relevant financial relationships.

American Society of Human Genetics (ASHG) 2015: Abstract 252. Presented October 9, 2015.


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