A new study found that a great number of teenagers are interested in knowing the incidental results of genetic tests, even though currently they do not have that option.
In the study, the researchers gave a survey to a group of students, and found that about 83 percent of them preferred knowing the genetic test results, no matter what they were about – be it conditions that would affect them in their teenage years, or in adulthood.
For the study, the researchers looked at incidental findings, or conditions that are unrelated to the current medical condition which is being treated, and that are discovered unintentionally. The genetic findings were also out of the adolescents’ control, meaning that there was nothing they could do about them, because the diseases would only manifest themselves in adulthood.
Dr. Sophia Hufnagel, a paediatric geneticist at Children’s National Medical Center in Washington, D.C, said that consent forms are given to adults before they undergo genetic testing, so that they can choose whether they want to know about potential incidental findings.
However, teenagers and their parents cannot choose to have access to the incidental findings of conditions that would only occur in adulthood, Hufnagel stated.
According to Hufnagel “teenagers seem to be able to understand the issue enough to have a say in their involvement. [Ages] 12 or 18, they were easily able to talk about the pros and cons.”
Researchers surveyed 282 students from Cincinnati who were 12 to 18 years old. Before the survey, the students were given a presentation on genetic testing.
The results showed that 83 percent of the students wanted to have access to the incidental findings. About 39 percent of the students wanted to know the results of the genetic test, in order to be aware of what the future holds for them.
More than half of the students said that they would not make this decision on their own, but with the help of their family, compared with 19 percent who said that they would not involve anyone else in their decision.
Hufnagel believes that the study is not 100 percent accurate, since all of the participants in the survey were healthy and they were asked about a hypothetical situation. When put in a real-life situation, people tend to act differently.
Elsa Reich, a certified genetic counsellor and professor of paediatrics at New York University School of Medicine, said that knowing this type of information may have serious psychological implications for children and parents alike.
Image Source: bioethics