Abstract and Introduction
Providing health services to young people poses specific challenges as a consequence of their unique developmental stage. In the field of genetics, providing developmentally appropriate care can be further complicated by the familial nature of genetic information. Several fields of medicine have developed specific guidance around how best to work with adolescent patients. No such advice exists in the field of clinical genetics or genetic counseling. It is time for the field of genetics to address this aspect of practice through development of a specific adolescent-friendly model of care. Without such a model, the field risks falling behind other medical specialties and adolescents who visit genetic health professionals are at risk of missing out on best possible care.
Young people currently account for over a quarter of the world's population, meaning that never before have there been so many adolescents in the world. Whereas in the past, the life stage of adolescence might have been thought of as spanning only the teenage years, it is now commonly understood to span the ages of 10–24 years, as it is believed the biological and social transitions that have traditionally defined adolescence now occur across this entire range. In the current article we refer to adolescents, young people and youth interchangeably, using this broader age range to define them.
As well as changing the way we define adolescence, the past few decades have brought about dramatic changes in the way we think about adolescents. Young people's emerging autonomy is increasingly being recognized, as is their competence and their rights to have a say about how their lives unfold. As a direct consequence of this evolution in our thinking about young people, clinical health practice and policy have also changed. Of particular importance has been the establishment of the Society for Adolescent Health and Medicine (SAHM) and the recommendations for health policy and practice that SAHM has published.[2–5] Another example of the increasing awareness occurring about adolescents was The Lancet's decision, for the first time, to devote an entire issue to adolescent health in 2007 and then to do so again in 2012.[6,7] This constituted a clear signal that adolescent health is an important priority internationally, deserving of significant attention and focus.
The idea that we need to adjust the way in which we work with adolescents in the health setting is clearly gaining momentum. Literature is available regarding how to engage with and assess adolescents effectively,[8,9] research and commentary is being published to help us understand how best to train health professionals in enacting principles of adolescent-friendly care[10,11] and young people themselves are also being consulted in order to document their views.[12–19] However, this growing knowledge about what constitutes adolescent-friendly care has not yet been shared with and translated to all medical specialties.
Advances in human genetics have led to a greater understanding and awareness of the contribution of genetics to disease. When the diagnosis of a genetic condition is made, family members are encouraged to disclose genetic information to relatives, including their offspring. Although the information may not have immediate implications for young people, awareness may enable them to integrate the information in a nonthreatening and supportive way. Young people might see a genetic health professional for a range of reasons including reproductive advice if planning a pregnancy or prenatal advice if they are pregnant; or young people might seek presymptomatic or predictive testing for a genetic condition that exists in their family. Another reason young people might see a genetic health professional is for ongoing management of an existing condition that has a known genetic etiology (e.g., Von Hippel–Lindau syndrome or achondroplasia). Furthermore, specific genetic conditions can impact on developmental and cognitive characteristics through adolescence, such as Klinefelter syndrome or Friedrich ataxia. Adolescents with conditions such as these require access to a team of professionals who can support their functioning and coping. Finally, adolescents may interact with genetic health professionals in relation to screening for reproductive risk such as for cystic fibrosis, thalassemia and/or Tay Sachs disease through screening programs offered in high schools.
In this article we consider the question of where the field of clinical genetics stands in relation to adolescent-friendly healthcare. We draw on broad guidance about developmentally appropriate care and place this alongside the latest empirical research and commentary concerning young people in the clinical genetics setting. We then explore some of the potential barriers to adolescent-friendly care within the setting of clinical genetics. Our paper is primarily targeted at genetic health professionals such as clinical geneticists and genetic counselors. However, the content might also be of use to health professionals more broadly.
RE Duncan brings expertise from the fields of adolescent health and ethics, while MA Young brings expertise from the fields of genetic counseling and family therapy. Our aim in the current article is therefore to bring these fields together, combining tacit and overt knowledge in order to encourage increased collaboration between these fields. We hope that in merging the wisdom already contained within the disciplines of adolescent health and clinical genetics specifically, we might spark a new phase of open discourse about adolescent-friendly genetics practice and, ultimately, inspire a new model of care for adolescents accessing genetics services. Our aim is not to outline such a model in this article, but rather to argue for and justify the need for one.
Personalized Medicine. 2013;10(6):589-600. © 2013 Future Medicine Ltd.