Toward Individualized Genetic Counselling in Hereditary Cancer

Main aims

The suggested study will provide the following new knowledge:

1.What knowledge does the counselee seek? Given the opportunities for genetic counselling, what are the counselee's expectations? What information does the counselee seek with regards to hereditary cancer? What information does the physician/counsellor intend to convey? What information is indeed presented for the counselee during the consultation? If discrepancies are found, how do they influence the counselee's emotional health, well-being and compliance in preventive activities?

2. When should relatives be informed? Under what circumstances would the physician/counsellor consider violating patient confidentiality without the consent of the counselee in order to inform rela-tives about increased risks for cancer?

3. How to manage optimal follow-up? How can optimal follow-up after genetic counselling beprovided? The study will examine the attitudes and knowledge in hereditary cancer of physicians (cancer specialists and surgeons) who refer individuals to genetic counselling as well as attitudesand knowledge of specialists who have an ever-increasing amount of follow-up procedures to conduct after genetic counselling.

Design and method

Data will be collected longitudinal from persons who are attending to genetic counselling. Also by questionnaires to random samples from the general population and individuals at risk for hereditary diseases.
Annually, 1400 individuals seek genetic counselling for potential hereditary cancers at these centres, which allows an unprecedented and unique amount of data. Because of the study size it has a strong potential to generate knowledge that can be generalized and generate subgroup data. Hence, the size of these materials, in combination with 10 years experiences from genetic counselling in hereditary cancer, together with medical and psychosocial research, constitutes the basis project.

Financed

Financed by the Swedish cancer Society 2002-2010


The project group

Karin Nordin, Afsaneh Roshanai, Charlotta Ingvoldstad, Richard Rosenquist Uppsala university. Cathrine Bjorvatn University of Bergen, Norway.

This project is an inter professional project within medical genetics and caring sciences. Data will be collected in collaboration between the oncogenetic clinics at the Uppsala University Hospital, Sweden, and the Centre for Medical Genetics and Molecular Medicine, Haukeland University Hospi-tal, Bergen, Norway.

Kontakt

Forskningsledare

Karin Nordin
Professor

018-471 3487
E-post