Genetic sequencing is playing an increasingly important role in scientific research and care for children with cancer. This means that an increasing number of parents and children are asked to make a choice on participation in genetic research, and more families are receiving the results of such research. Previous studies have shown that these choices can be challenging for families, and that genetic research and its outcomes can be complex. In my research, we use interviews and questionnaires to explore the experiences of parents and adolescents. Additionally, we inquire about the ideas that families have regarding how future genetic counselling should be conducted. Through our research, we aim to contribute to better information provision and support for families involved in genetic sequencing. We will also collaborate in designing the associated policies at the Princess Máxima Center. Lastly, we will develop educational materials with the involvement of parents and patients. Ultimately, we hope to support families in making choices that suit them best.
Prof. dr. Martha Grootenhuis, prof. dr. Marry van den Heuvel-Eibrink, dr. Marjolijn Jongmans, and dr. Roel Wouters are directly involved in this research project. Close collaboration is maintained with researchers in the field of genetic predisposition, primarily with prof. dr. Roland Kuiper, prof. dr. Hans Merks, dr. Janna Hol en drs. Jette Bakhuizen.