What genetic information do parents want to know about their children?
As a pioneer in the field of genetics, Geisinger has always proceeded cautiously and responsibly in the selection of genes and genetic conditions that we consider as part of the MyCode Community Health Initiative program.
A touchstone of the program is our commitment to consulting with our patient-participants, particularly, but not only, on issues that may be potentially sensitive.
We have an Ethics Advisory Council that includes both internal and external experts as well as local community members to advise us. Also, from time to time, we make use of focus groups, community forums, and community surveys on specific topics.
One such topic on which we recently consulted our community members was on the question of what parents want to know about the genetic results of their children as part of MyCode’s Genomic Screening and Counseling program.
Reporting genetic results in children based on population screening — outside a diagnostic setting — is so new that there is very little research to fall back on. So, we conducted our own, which has been welcomed in the wider genetics community.
Our research was recently included in a special edition on clinical and public health genomics of the Translational Behavioral Medicine journal.
A Geisinger team led by Alanna Kulchak Rahm, Ph.D., M.S., LGC, conducted four focus groups of parents with a child enrolled in MyCode.
In the focus groups, we asked the parents to imagine a scenario where the child was identified through MyCode to have a genetic change related to a condition with medical action needed now (childhood onset). Then we asked them to imagine a scenario for a hereditary cancer syndrome, which would only affect the child’s health, if at all, in his or her adulthood (adult onset) and for which there was no recommended medical intervention during childhood.
Our results showed that overall parents were very interested in all genomic information and mainly expected to use the MyCode result to protect their child’s health.
They were interested in both types of information (childhood and adult onset) and provided reasons why the knowing of the genetic risk for the adult onset hereditary cancer was important even in childhood.
Parents wanted to tailor the information over time to their child and the child’s maturity level, regardless of the age of the child when the initial result was available.
We are using this information to guide program development for reporting child genetic information through Geisinger’s Genomic Screening and Counseling program. We will continue to engage parents and children in the process.
As the program develops, we will need to do, and plan to do, more empirical research on how families cope with and use information from MyCode to further inform how best to support families in the communication and use of this genomic information.
Note: Geisinger patients with questions about this or any aspect of the MyCode Community Health Initiative can contact us toll free at 844-798-1687 or by email to JoinMyCode@geisinger.edu