Study profiles parents’ attitudes on genomic studies, data sharing and privacy
When considering enrolling their children in genomic studies, parents are more concerned about the future risk to their child and may be more restrictive to data sharing options than adult patients are for their own enrollment, said researchers from Baylor College of Medicine in a new report in the journal of Pediatrics.
“The issue of data sharing is a complex one,” said Dr. Matthew Burstein, a student in the M.D./Ph.D. and structural and computational biology and molecular biophysics programs at Baylor, and the first author on the report. “Scientists performing important medical research are dependent upon genomic data, and several funding agencies support the availability of such data. However, given the brief existence of the technologies used in these studies, the full risk such policies place on subjects is not widely known, especially for children enrolled by their parents.”
The study addresses a very significant issue regarding the enrollment of children in cancer genomics studies, noted Dr. Ching Lau, corresponding and senior author on the report and an associate professor of pediatrics – hematology/oncology at Baylor and a member of the Texas Children’s Cancer Center and the NCI-designated Dan L. Duncan Cancer Center.
"Currently it is required that all federally funded genomics studies participate in full data sharing without exception,” Lau said. “This could become a major deterrent for parents to allow their children to participate in cancer genomics studies because they are uncomfortable with their children’s data being shared in publicly available databases. Because of the much lower incidence of cancer among children and therefore the need to enroll as many patients as possible in cancer genomics research, the reluctance of some parents to participate could potentially compromise the feasibility of such studies. Hopefully this paper will stimulate the discussion of these issues at the national level.”
Data from federally funded genomic studies are stored in national databases and may be accessible to anyone online or only to qualified researchers.
The Baylor researchers sought to profile the decision making process parents made when they enrolled their children in genomic studies at Baylor.
The team examined genomic research participants’ opinions to explore differences in data sharing preferences between parents of pediatric patients and adult patients. They interviewed 113 parents of pediatric patients and 196 adult participants from six genomic studies. All participants were randomized to three experimental consent forms and took part in structured interviews exploring their thoughts on data sharing, how well they understood the study and attitudes toward the purpose of the study and possible risks.
Parents more restrictive
A majority of the parents (73.5 percent) and adult participants (90.3 percent) ultimately consented to broad public release. However, parents were significantly more restrictive in their data release decisions.
The researchers explained this was not due to understanding, or perceived benefits of participation, but rather autonomy and control. Parents want to be more involved in the decision about data sharing and are significantly more concerned about unknown future risks than adult participants.
“There are privacy risks associated with public data release,” said Dr. Amy McGuire, director of the Center for Medical Ethics and Health Policy at Baylor and principal investigator of the study. “It is not surprising that parents are worried about protecting their child’s future, especially given the novelty of genomic technologies and the fact that we currently have no comprehensive law that protects individuals from harmful or discriminatory use of their genetic information. These findings have important implications for policies that are being developed at the National Institutes of Health and internationally about how broadly to release genomic research data and whether special rules are necessary to protect pediatric research participants.”
“This is the first time empirical data has been added to what has otherwise been a very abstract ethical argument balancing the need for data sharing and the many rights and risks children encounter when participating in such studies,” said Burstein.
Other Baylor authors include Jill Oliver Robinson, senior project manager in the Center for Medical Ethics and Health Policy, and Dr. Susan Hilsenbeck, professor in the Lester and Sue Smith Breast Center.