Presymptomatic genetic testing for hereditary cancer in young adults: a survey of young adults and parents

Citation

Godino L, Turchetti D, Jackson L, Hennessy C & Skirton H (2019) Presymptomatic genetic testing for hereditary cancer in young adults: a survey of young adults and parents. European Journal of Human Genetics, 27, Art. No.: 291-299. https://doi.org/10.1038/s41431-018-0262-8

Abstract
Presymptomatic testing for hereditary cancer syndromes should involve a considered choice. This may be particularly challenging when testing is undertaken in early adulthood. With the aim of exploring the psychosocial implications of presymptomatic testing for hereditary cancer in young adults and their parents, a cross-sectional survey was designed. Two questionnaires were developed (one for young adults who had considered presymptomatic testing, one for parents). Questionnaires were completed by 152 (65.2%) young adults and 42 (73.7%) parents. Data were analysed using descriptive statistics, inferential testing, and exploratory factor analysis and linear regression analysis. Young adults were told about their potential genetic risk at a mean age of 20 years; in most cases, information was given by a parent, often in an unplanned conversation. Although testing requests were usually made by young adults, the majority of parents felt they had control over the young adult’s decision and all felt their children should be tested. Results suggest that some young adults did not understand the implications of the genetic test but complied with parental pressure. Counselling approaches for presymptomatic testing may require modification both for young adults and their parents. Those offering testing need to be aware of the complex pressures that young adults can experience, which can influence their autonomous choices. It is therefore important to emphasise to both parents and young adults that, although testing can bring benefits in terms of surveillance and prevention, young adults have a choice.

Keywords
Decision-making; genetic counselling; hereditary cancer; young adults; parents; presymptomatic genetic testing; familial cancer syndromes

Journal
European Journal of Human Genetics: Volume 27

• Accepted manuscript