Providing tailored support for
families with hereditary cancer

Nationwide research study for advancing genetic testing and counseling

Project Introduction

About the Study

Every year in Finland, around 150 children under the age of 16 and around 80 young people aged 15-19 are diagnosed with cancer. We aim to enroll 30-50 families each year that have been diagnosed with cancer predisposition syndrome. The present study will involve all university hospitals in Finland and recruitment will take place between 2023 and 2025.

This prospective clinical study aims to investigate how parents experience and perceive genetic testing for cancer susceptibility that is performed on their children. The study focuses on information needs, longitudinal psychosocial effects, sense-making and integration, standardisation of testing, and the advancement of genetic counselling. This is a nationwide translational project, involving pediatric haemato-oncologists, geneticists, psychologists, and bioethicists.

Read more


To contact us about the project, please email us at

For Parents

Below is the information sheet given to parents who are considering taking part in the study, and a lighter version for explaining the study to children:

Info sheet (in Finnish)

For children (in Finnish)


Our Finnish site includes useful links for those taking part in the research, considering it, or otherwise interested in it. Material includes articles on hereditary cancer and links to peer support groups.

For researchers


Enlarge the graphs by clicking them.

Research instruments of the survey form

The last four are only included in the pre-interview questionnaire

Family Assessment Device (General functioning)Structural and organizational properties of the family
The Symptom ChecklistSymptoms of anxiety
Beck Depression InventoryDepression
Warwick-Edinburgh Mental Well-being ScaleMental well-being
Satisfaction with Life ScaleLife-satisfaction
EuroQol Group; EQ-5D-5LHealth-related quality of life, self-assessed
EuroQol Group; EQ-5D-YHealth-related quality of life, adult’s assessment of the child
Precision in Pediatric Sequencing Knowledge QuestionnaireKnowledge about heredity and genetic susceptibility to disease
Multidimensional Impact of Cancer Risk AssessmentDifferent impacts of disclosing genetic test results
Reconstruction of LIFE-events questionnaire (Modified for genetic counseling)Contingency, interpretation, meaning-making, and narrative integration
Existential Quest scaleFlexibility of worldview
Intolerance of Uncertainty scaleTendency to find uncertainty upsetting and distressing
Sense of Coherence scaleView of life and coherence as a psychosocial resource


Website and DALL-E 2 illustrations created by Joel Janhonen.