Wells’ Poster on Testing Minors for Adult-Onset Genetic Disease Is Finalist

By Purnell T. Cropper | October 22, 2010

A poster presentation on testing minors for adult-onset genetic disease by McKenzie Wells, Arcadia University Genetic Counseling student, was selected as one of the five finalists for the Best Poster Award at the National Society of Genetic Counselors’ (NSGC). Assessing Factors Involved in Genetic Counselors’ Support of Predictive Genetic Testing in Minors was authored by M. Wells1, A. M. Augustyn2, K. Valverde1. (1Arcadia University, 2Lehigh Valley Hospital).

“Testing minors for adult-onset genetic disease is controversial. The National Society of Genetic Counselors’ (NSGC) position statement regarding predictive testing of minors emphasizes caution and proper education about possible consequences. Since genetic counselors hold a significant position in decisions to test minors for disease, understanding factors involved in their support of testing minors is important and is the topic of this investigation.

“Roughly 20% of NSGC list serve members (N = 301) participated in an online survey presenting seven scenarios, in which counselors were asked to indicate their likelihood to support testing a minor. They were asked to rank certain factors in order of importance in their decision to support testing. The 13 factors were ranked as follows: availability of treatment, autonomy, maturity level of child, possible distress of child, age of child, disease severity, familial risk, effect on family dynamics, emotional preparation, family planning, financial/lifestyle preparation of parents, and parental guilt.

“Counselors appeared to respond to scenarios according to how they ranked the factors; most (66%) counselors would definitely support testing in a scenario with FAP, where effective treatments are available. An exception was the scenario exploring financial/lifestyle preparedness of the parents; though this factor ranked 11th overall, 119 counselors (~40%) indicated they either would or possibly would support testing.

“Scenario responses were analyzed by one-way ANOVA to determine if certain demographics were significant in counselors’responses. Demographics included respondents’ age, gender, children, area of practice, number of years in practice, and frequency of encountering testing of minors. None of the demographics analyzed had a significant effect on how counselors responded to the scenarios. These results suggest that overall internal factors do not appear to shift the focus of counselors’ support away from the patients, and available treatments and autonomy are the most significant factors in counselors’ decision to test minors.”