Adolescents prefer disclosure of secondary findings from genetic testing

Among adolescents in Cincinnati, the majority report that they would want to be told about unanticipated findings from genetic sequencing, even if there was no medical action to be taken until adulthood, according to data presented at the American Society of Human Genetics 2015 Annual Meeting.

These findings are in contrast to current guidelines which discourage health care providers from disclosure to minors.

“Whole exome sequencing in minors can potentially reveal an elevated risk for a condition unrelated to the initial reason they underwent genetic testing, and there may be no medical intervention to mitigate that risk until adulthood. Some people prefer to know about these secondary findings anyway, while others would rather not know,” Sophia Bous Hufnagel, MD, pediatric geneticist at the Cincinnati Children’s Hospital Medical Center, said in a press release.

Hufnagel and colleagues conducted a cross-sectional study to assess the views adolescents (n = 282), aged 12 to 18 years, have about disclosure of nonactionable secondary findings from whole exome sequencing.

Results demonstrated that the majority of participants (83%) would prefer to be told about nonactionable findings from genetic testing.

‘Future planning’, such as education, career choice, relationships and reproductive options, was cited as the main reason participants would want the information (39%). The most common reason for not wanting to know secondary findings was concern for added stress to their family.

Nineteen percent of participants believed they should be able to make the choice for disclosure on their own, and 53% thought they should be able to make the decision jointly with their parents.

Disparities in disclosure preference was seen between ages, with 87% of participants aged 13 to 18 wanting to receive secondary findings compared with only 55% of those aged 12 years. No other differences between disclosure preferences and participant characteristics were observed.

“Some argue that disclosing such findings to teens would take away their right to decide later, as an adult, what they want to know. Many people also felt that disclosing results to children may cause psychological harm, especially when there are no prevention or treatment options available until adulthood — that you should just let a kid be a kid. Others argue that a truly nonactionable finding does not exist and that knowledge of such results, despite available treatment options, has value and benefit in itself.

“The bottom line is that disclosures of secondary findings to adolescents is a complex issue that should involve the stakeholder (the teen), as well as their parents or guardians. While these decisions should probably be made on a case-by-case basis, it is important to have adolescents’ input when shaping the policies and guidelines that affect them,” Hufnagel said in the release. – by Casey Hower

Reference:

Hufnagel SB et al. Adolescents’ opinions on disclosure of non-actionable secondary findings in whole exome sequencing. Presented at: American Society of Human Genetics 2015 Annual Meeting; Oct. 6-10; Baltimore.