Hereditary cancer – who discloses information to at-risk relatives?

How do affected relatives get information about congenital hereditary risk of cancer in the best way? Is it the patient or the healthcare system that is responsible for ensuring that relatives receive the information?

In the seminar (which is in English), researchers and clinicians from Switzerland, Denmark and Sweden talk about how information dissemination to affected relatives can be developed to support patients and their relatives, and strengthen cancer prevention and early detection. The seminar is aimed at those who in different ways work with patients with cancer in the northern healthcare region. 

Time: 27th January 09:30 - 11:30

Place: Hybridseminarium. Online och lokal Bärnstenssalen, NUS

Program and link to the digital meeting

Program

9.30-9.35 Welcome and introduction

Gustav Silander, MD, Department of Oncology, Norrland’s University Hospital, Umeå, Sweden

Gustav Silander presents the scope of the seminar.      

9.35-10.00 CASCADE Cohort: The first 5 years

Maria C. Katapodi, PhD, RN, FAAN, Professor of Nursing Science, University of Basel, Switzerland

Professor Katapodi will present the knowledge gained from the CASCADE-consortium. This open cohort is designed to elicit factors that enhance carrier testing for hereditary breast and ovarian cancer and Lynch syndrome.

10.00-10.25 The Danish model for risk disclosure in HNPCC families

Helle Vendel Petersen, RN, PhD, senior lecturer, Department of Clinical Research, Copenhagen University Hospital, Hvidovre, Denmark

Dr Petersen will present her research work of the evaluation of risk disclosure within the Danish HNPCC-registry, in which direct contact to at-risk relatives is performed within clinical practice.

10.25-10.40 Coffee break

10.40-11.00 The DIRECT-study: a Swedish multicenter study on direct versus family-mediated disclosure to relatives at-risk of hereditary cancer

Anna Rosén – MD, PhD, Cancergenetic unit, Norrland’s University Hospital, Umeå, Sweden

Dr Rosén will present the pre-RCT studies exploring attitudes towards risk disclosure in the Swedish general public and patients and give us an update on the Swedish DIRECT-study.   

11.00-11.30 Discussion

Moderated by Gustav Silander, MD

How to measure uptake of genetic counseling and/or testing in hereditary cancer?

What are the similarities and differences in risk disclosure practices in Sweden, Denmark and Switzerland?

What have we learned from studying risk disclosure? 

Questions? Contact Anna Stecksén: 072 – 236 22 12, anna.stecksen@regionvasterbotten.se