During this dawning of the genetic age, the question "What do we tell the kids?" has taken on added significance.
Families debate whether to learn their genetic risk for serious diseases, and whether to share that knowledge with their children, once they know. Should Huntington’s disease, amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease), or BRCA1/2 test results remain a family secret?
The issue is infused with ethical, medical, practical, and personal ramifications, with no one "right" answer for any disease, family, or individual child.
A new study published in the journal Cancer adds context to the question, accounting for the largest (253 parents of 505 children) cohort to date of parents who underwent testing to see whether they carried the BRCA1/2 gene, and who agreed to speak to researchers about whether and when they shared their test results. (Cancer 2012;118:3417-25)
Many of the findings are not surprising.
Most (66%) children were informed of the result of their parents’ tests.
Girls were more likely to learn these results than were boys, and older children more likely than younger children to be given this information. Interestingly, favorable results were more likely to be shared with offspring, suggesting that parents may have wanted to alleviate their children’s concerns about an illness that may have hung over the family like a sense of doom.
The mean age at parental disclosure was 17 years.
Importantly, though, more than 20% of offspring less than 10 years old also learned the result of the test, with this group more likely than other children to be perceived by their parents as distressed (defined as upset, scared, avoidant, or fatalistic), confused, or inquisitive.
When ethicists and parents ponder the potential benefits of sharing health risk information with children, a key question is whether they are likely to be able to gain something from the knowledge: an insight into their own health, for example, or a sense of relief about their future.
In the case of diseases caused by known genetic mutations, preimplantation genetic diagnosis might prevent children from passing on an inherited illness to their own offspring. The authors discuss how effective communication of hereditary risk, properly timed, might represent a "teachable moment" about healthy lifestyle choices.
Certainly, these are worthy considerations and would encourage most parents to open the pages of the family’s health history to adolescents.
Where I think clinicians might pause in recommending full and complete disclosure of risk information is with younger children, those under-10-year-olds who sound troubled and puzzled about what they heard.
Yes, small children should know when mom, dad, or a grandparent has a disease that explains tangible changes like hair loss, fatigue, or a hospital stay. But a small child can’t fathom genetics or abstract risk, nor should he or she be expected to make lifestyle choices accordingly.
Far more reasonable, I think, is to suggest that genetic test results be shared at a developmentally appropriate age, ideally adolescence, within the context of learning about other risks to health that they can understand and actually do something about.
Betsy Bates Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.