How do people live with a genetic risk for cancer? - Ethical and psychosocial implications of diagnosis and examination of hereditary cancer
Format
Completed research project
Time table
1999 - 2001
Funding
Swedish Cancer Society
Aims
It is possible to identify individuals with an increased risk for cancer due to hereditary factors based on the family history and sometimes on analyses of the carrier of the hereditary disposition. Several genes for hereditary tumours have been localised and characterised. Frequently the illnesses are polygenetic and a mutation in a single gene implies only a part of the total risk for disease of that person. Other predispositions, varying degree of penetration and several environmental factors affect the accumulated scenario of risk.
The project aimed to identify and document psychological reactions to genetic information of risk in connection with diagnostics and examination of hereditary cancer, and to study possible explanations to differences in psychological reactions like personal characteristics, values and philosophy of life.
Four groups were selected to represent a wide range of risk reactions and risk evaluations. Two groups were referred for genetic counselling. Some of them had symptoms while others did not. Patients in group three had a diagnosed cancer disease but a referral for genetic counselling was not medically indicated. This group had given the hereditary risk issue some though. A fourth group included people who had lived for a long time without symptoms, but were convinced that they were carriers of a hereditary cancer disease.
Publications
Lidén A, Psychological distress and riskperception in individuals attending genetic counselling, MSc Thesis, Uppsala University.
Strømsvik N, Nordin K, Berglund G, Engebretsen LF, Hansson MG, Gjengedal E, Living with MEN 1. Living with Multiple Endocrine Neoplasia Type 1. Decent Care- Insufficient Medical and Genetic Information. Journal of Genetic Counseling 2007;16:105-117.
Lidén A, Berglund G, Hansson MG, Rosenquist R, Sjödén P-O, Nordin K, Genetic Counselling for Cancer and Risk Perception, Acta Oncologica, 2003;42(7):726-734.
Nordin K, Lidén A, Hansson MG, Rosenquist R, Berglund G, Coping style, psychological distress, risk perception and satisfaction in subjects attending genetic counselling for hereditary cancer, Journal of Medical Genetics, 2002;39:689-694.
Berglund G, Lidén A, Hansson MG, Sjödén P-O, Öberg K, Nordin K, Quality of life in patients with Multiple Endocrine Neoplasia Type 1 (MEN 1), Familial Cancer, 2003;2:27-33.
Hansson MG, Ethical Management of Hereditary Cancer Information, Acta Oncologica, 1999;38(3):305-308.
More information
- Mats G. Hansson, Professor of Biomedical Ethics
Project leader
Mats G. Hansson, professor
Collaborators
Gunilla Berglund, Psychologist, PhD
Annika Lidén, RNT, Research Assistant
Karin Nordin, Psychologist, Dr Med Sc
Lars Holmberg, MD, Professor
Per-Olow Sjödén, PhD, Professor
Kjell Öberg, MD, Professor
Niklas Dahl, MD, Associate Professor
Bengt Glimelius, MD, Professor
Katarina Westerlund, Doctoral Candidate
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