Carrier Testing in Minors by Kyra Firestone (ISU Genetic Counseling Student)
Current guidelines on carrier testing for minors suggest that carrier testing be delayed until the minor becomes an adult or has the capacity to make autonomous decisions about genetic testing. Overall, carrier testing guidelines have been primarily focused on concerns for the child’s psychological wellbeing. Interestingly, data has shown that carrier testing on children does not seem to cause any harm.
A study done by Vears et al. interviewed 17 healthcare professionals (10 genetic counselors and 7 clinical geneticists) to assess why they believe parents want carrier testing for their unaffected children. They then compared the healthcare professional’s beliefs to the reasons parents actually report. Overall, this study found that healthcare professionals are making incorrect assumptions about why parents want their unaffected children to have carrier testing.
In all, healthcare professionals seemed to believe that parents want to know their children’s carrier status for their own personal benefit. Many healthcare professionals believe that parents are curious to know their children’s carrier status, want to relieve their feelings of anxiety or guilt, want reassurance that their unaffected children are truly unaffected, think it would be convenient to test all children at the same time, and want to know if their children are at risk to have affected offspring in the future. As you can tell, most of these reasons are directly related to the parents, and not necessarily to the children that are being tested.
Healthcare professionals also mentioned that they are afraid that parents will misunderstand the implications carrier testing or misuse this information. In addition, many healthcare professionals are worried that parents will change their mind about telling their children, or will relay this information incorrectly because several years have passed since they met with the genetic counselor.
Parents, on the other hand, give very different reasons for why they want to test their unaffected children. The main reason parents reported wanting to know their children’s carrier status was to be able to accurately inform their children about their carrier status when they begin to ask questions. In fact, most parents did not mention reassurance as a reason for desiring carrier testing.
It is also important to point out that healthcare professionals seem to be worried about the parent’s motives for wanting to know carrier status. This raises the question of whether or not we should have the authority to deny carrier testing if we believe the parent’s reasons for wanting it are not the “right” reasons. This article argues that even if parents want to know the carrier status of their children for their own benefit (such as for reassurance), there is no reason to assume that this would result in harm to the child.
In all, I think this article shows that we as healthcare professionals should not jump to conclusions about parent’s reasons for wanting carrier testing for their children. If a parent gives a “parent-focused” reason for wanting carrier testing, we should avoid judging them and instead simply ask them what they plan to do with this information (when they plan to tell their children, how they plan to have that conversation, etc.). I think it is important that we trust the parents and remember that carrier testing in children, regardless of reason, has not been shown to cause harm.
Vears, D., Delany, C., Massie, J., & Gillam, L. (2017). “They Just Want to Know” – Genetic Health Professionals’ Beliefs About Why Parents Want to Know their Child’s Carrier Status. Journal Of Genetic Counseling. http://dx.doi.org/10.1007/s10897-017-0070-2