NEW YORK (GenomeWeb News) – One of the big ideas driving the advance and proliferation of genetic testing is the notion that the earlier a genetic condition can be diagnosed, the better the chance to monitor and treat the disease and any related conditions.
New technologies are allowing for testing of more conditions earlier, but there are some new issues that arise when a second grader’s parents finds out she has a breast cancer mutation, that a newborn has a variation linked to colorectal cancer, or that a teenager has a predisposition to Alzheimer’s.
Before these situations become more common, researchers and physicians planning to develop or use genetic testing technologies and information must find ways to talk to parents who are asking questions about just what will happen with their child’s samples and genomic data.
Scientists and policy developers at the Translating ELSI, Ethical Legal Social Implications of Human Genetics Research conference last week in Cleveland hashed through these issues from myriad angles.
One question they deemed central to the discussion is whether parents will be willing to deposit their children’s genetic information in DNA banks. These ethicists and scientists said they have found many parents are hesitant, and they agreed that it is important to begin to look into these parental concerns.
Many parents want to know what confidentiality protections exist for their children, said Beth Tarini, a researcher at the University of Michigan’s Division of Pediatrics. They also have concerns about what they are consenting to when they allow their child’s samples and genomic data to be stored.
Through studying polls and surveys, Tarini found, to her surprise, that parents are not much more protective of their children’s genetic information than of their own. However, parents were split nearly evenly about even giving up their own genetic information.
Tarini discovered from the CS Mott Children’s Health National Poll that around 36 percent of parents would give up their own samples and around 31 percent would not, and roughly 35 percent of parents would allow their children’s samples to be deposited while around 29 percent would not. (More information about the Mott Children’s Poll can be found here.)
From a researchers’ perspective, those numbers are encouraging in that they do not show a parental knee-jerk reaction against letting their children’s samples be used for study.
Concerns that parents may have about what happens to their children’s samples and other issues, the ethicists said, may be balanced by the drive to do all they can for their children. Parents could fear that it would be neglectful to not help their children to find out what they need to know about their own health.
Another interesting finding in the Mott study, Tarini explained, was that “more educated adults were less likely to participate in genetic testing than those who are less educated.”
One consistency, Tarini said, is that attitudes about genetic testing in general spill over into biobanking. If you are for one you’re for the other, she explained. The dividing lines in the studies appeared to be linked to social lines such as education strata and ethnicity.
If their children already were sick or had been ill, however, the parents in the study were more likely to support sampling, testing, and contributing their children’s information to biobanks.
Looking beyond the numbers of who would and would not want their children to have genetic tests, Tarini found other patterns.
“Nearly everyone wanted to know about the return of their results,” Tarini said. The respondents wanted to know about how the confidentiality of test results would be protected, about the feasibility of the return of information about them, and about how these processes would happen.
Tarini also said that people want to be notified if researchers find something wrong in their children’s genetic sample.
The complexities facing researchers trying to parse out what parents want in return for their consent to use their children’s DNA change, but do not disappear as those children age, Jeffrey Botkin, a pediatrics researcher at the University of Utah’s School of Medicine, explained to a group of his peers at the ELSI conference.
One complication in using adolescents as contributors for genetic studies is not their inability to make decisions, as it is with younger children, but their potential to have the same reasoning abilities as adults.
While there is yet little information about how genetic testing issues are different for adolescents as opposed to younger children, there are some known concerns about this age group, Botkin said.
There are concerns about how much parental influence there is on some teenagers, and there also needs to be an awareness of their maturity levels, Botkin said. He also argued that social phenomena such as the powerful influence of peers and the fear of stigmatization are other concerns that should be included in drafting a framework for adolescent genetic testing and sampling.
Performing genetic tests on children for adult onset diseases, Botkin said, should be viewed as a separate matter. “While parents are concerned about passing a gene mutation on to children, they are about half for adult-onset genetic tests and half against it,” Botkin said.
The issues above and other similar ones arise inevitably in any discussion of the creation of pediatric biobanks that could help researchers use genomics data to apply to illnesses and diseases that afflict children.
One unique consideration for this group is what happens to the biobank samples in the future. For example, there are questions about how they are to be used when the child biobank donor grows into adulthood, said Aaron Goldenberg, a public health researcher at the Center for Genetic Research Ethics and Law at Case Western Reserve University.
“What is the scope of parental permission, and is it necessary to obtain consent again when a child grows up?” are important questions, Goldenberg said. Also, what if you wish to use a sample donated earlier but you are unable to locate the individual who gave the sample? Is it ethical to use these? Or, Goldenberg wondered, “If the donor doesn’t turn up, should the samples be destroyed?”
All of these potential scenarios are of real concern to parents considering allowing their children to donate samples to biobanks, Goldenberg said, and there is a need for data about how these issues play out, and about what adults think and feel about the new technologies of the genomic era.
For now, however, he said, much of the work that would provide the kind of data scientists and policymakers could use to help build and use these biobanks is yet to be done.