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Embargoed for Release
Thursday, October 19, 2017
11:00 a.m. U.S. Eastern Time

Teens’ Views Vary on Pediatric Genetic Testing for Adult-Onset Conditions
Findings Reported at ASHG 2017 Annual Meeting

BETHESDA, MD – Adolescents display a complex and nuanced understanding of the issues around pediatric genetic testing for conditions that do not appear until adulthood, according to findings presented at the American Society of Human Genetics (ASHG) 2017 Annual Meeting in Orlando, Fla.

Alanna Kulchak Rahm, PhD

Alanna Kulchak Rahm, PhD, Geisinger
Health System (courtesy Geisinger)

Alanna Kulchak Rahm, PhD, MS, LGC, Assistant Professor at the Geisinger Health System, along with colleagues at Geisinger, Sarah Lawrence College, and ASHG, qualitatively and quantitatively analyzed essays submitted to ASHG’s 2016 DNA Day Essay Contest. The contest focused on whether adolescents should be encouraged to defer such testing for such conditions until adulthood, as recommended by a recent ASHG position statement. The researchers analyzed the views and reasoning expressed in 1,241 essays written by 9th-12th grade students from 44 U.S. states and 23 other countries. Approximately half of the essays agreed with the ASHG statement that testing should be deferred, and the other half refuted that argument

Despite differences in their opinions, Dr. Rahm observed, “These kids have the ability to reason about the potential implications of genetic information for these conditions and to make thoughtful choices. Their arguments were in line with the discussions we’ve had with adults, including parents and genetics experts.”

Essay authors were asked to choose and describe an example of an adult-onset condition with an available genetic test, and to defend or refute the ASHG recommendation to defer testing until adulthood. The researchers found that students’ opinions on testing deferral was associated with their choice of condition – specifically, whether that condition was preventable among those with a genetic predisposition. Among students who focused on early-onset Alzheimer’s disease or Huntington disease, which are generally not preventable, a significant majority felt that testing should be deferred (64% and 62% respectively). Conversely, among those who chose BRCA-related breast or ovarian cancer, which can be prevented through medical intervention, lifestyle, and health decisions, only 46% felt that testing should be deferred.

The researchers did not find any associations between adolescents’ opinions on testing deferral and demographic factors, such as gender, grade level, school type (public or private), personal experience with the condition described, or geographic variables related to socioeconomic status. Planned questions for future research include the extent to which essays reflect understanding of test validity, reliability, and limitations; and ways to use these findings in the real world, such as developing modules to help teens facing genetic testing decisions or to help teachers address gaps in understanding.

“These findings will help us consider a variety of issues, such as how to include adolescents as we move forward in precision medicine, how to improve genetics education in schools and in the community, and how to change our discussion around genetics as the field changes and evolves,” said Dr. Rahm.

Presentation: Dr. Rahm will present this research on Thursday, October 19, 2017, from 11:00-11:15 a.m., in Room 310A, Level 3, South Building, Orange County Convention Center.

Press Availability: Dr. Rahm will be available to discuss this research with interested media on Friday, October 20, 2017, from 11:30 a.m.-12:15 p.m. in the ASHG 2017 Press Office (Room 210D).

References: Rahm A et al. (2017 Oct 19). Abstract: In their own words: Adolescent attitudes about deferring genetic testing for adult-onset conditions. Presented at the American Society of Human Genetics 2017 Annual Meeting. Orlando, Florida.

ASHG. (2016 Apr 25). ASHG 2016 DNA Day Contest: Winners and essay excerpts.

ASHG. (2015 July 12). ASHG issues position statement on genetic testing in children and adolescents.


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About the American Society of Human Genetics (ASHG)

Founded in 1948, the American Society of Human Genetics is the primary professional membership organization for human genetics specialists worldwide. Its nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses, and others with an interest in human genetics. The Society serves scientists, health professionals, and the public by providing forums to: (1) share research results through the ASHG Annual Meeting and in The American Journal of Human Genetics; (2) advance genetic research by advocating for research support; (3) educate current and future genetics professionals, health care providers, advocates, policymakers, educators, students, and the public about all aspects of human genetics; and (4) promote genetic services and support responsible social and scientific policies. For more information, visit: http://www.ashg.org.

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