Risk perception, screening practice and interest in genetic testing among unaffected men in families with hereditary prostate cancer
Introduction
The level of knowledge about dominantly inherited cancer susceptibility syndromes has increased dramatically during the last decade. A number of genes involved in these syndromes have been identified. The penetrance of known dominant susceptibility genes for common cancers, such as breast cancer, ovarian cancer, colon cancer and malignant melanoma, is 60–90% [1]. Cloning of these genes has made presymptomatic genetic testing for germ-line mutations possible for unaffected individuals in some families with hereditary cancer susceptibility.
Dominant Mendelian inheritance of prostate cancer susceptibility was first described by Carter and colleagues [2]. The proportion of hereditary in relation to sporadic prostate cancer is estimated to be in the same range as the corresponding proportion of other common forms of cancer, namely 5–10% 2, 3. Three chromosomal loci likely to comprise prostate cancer susceptibility genes have been reported 4, 5, 6, but no gene has been identified. Thus, presymptomatic testing for prostate cancer susceptibility is not yet possible, but probably will be available within a few years.
Notification of inherited cancer susceptibility and the process of genetic testing have important psychological and ethical implications 7, 8. Offering presymptomatic genetic testing to members of breast and ovarian cancer families is now part of standard clinical practice in many countries [9]. Numerous studies have addressed the associated psychological aspects, as exemplified by 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24 in this article. Only one such study has been published regarding men at high risk of prostate cancer [25]. There are profound differences between hereditary breast cancer and hereditary prostate cancer, such as age at onset, treatment modalities, screening methods and, of course, gender differences. Therefore, the results from studies of women in breast cancer families are of limited help when counselling men at high risk of prostate cancer.
The recent advances in research concerning the genetics of hereditary prostate cancer are thus contrasted by a lack of knowledge about the related psychological aspects. The aims of the present study were to investigate how unaffected men in families with hereditary prostate cancer perceive their risk of prostate cancer, how their increased risk affects them, what factors are related to obtaining regular screening, and whether these men are interested in presymptomatic genetic testing.
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Patients and methods
Two Swedish research groups, one at the University of Umeå and one at the University of Lund, have been working on the hereditary aspects of prostate cancer for several years. Swedish families with three or more connected cases of prostate cancer have been identified through population-based epidemiological studies 3, 26, 27 and through referral from practising urologists. Altogether 118 such families were identified up until 1 September 1998. During the primary investigation of these families,
Results
The response rate was 92% (110/120). Sociodemographic data for the responders and their reported family history of cancer are listed in Table 1.
Discussion
All subjects participating in the present study were members of families with a pedigree consistent with dominantly inherited prostate cancer, and were considered as having a 50% likelihood of being carriers of a mutated prostate cancer susceptibility gene. Accounting for incomplete penetrance 2, 30, 31, we estimated their average lifetime risk of prostate cancer to be 35–45%, which is an approximately 4- to 5-fold increased risk compared with Swedish men in general. The study subjects commonly
Acknowledgements
This study was supported by grants from AB Leo Research Foundation, Pharmacia-Upjohn; Cancer och Trafikskadades Riksförbund; The Swedish Cancer Foundation; Lion's Research Foundation, Department of Oncology, Umeå University; and the Swedish Medical Society.
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