Communicating cancer risk information: the challenges of uncertainty

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Abstract

Developments in predictive testing for inherited cancers have focused attention on the accurate and sensitive communication of risk information. Although sharing risk information is often equated with genetic testing, it is important to acknowledge that the need for risk information related to familial cancer is also relevant to those not eligible for, or interested in, testing. Communicating cancer risk information is germane to a number of health professions including physicians, geneticists, genetic counsellors, psychologists, nurses, health educators and social workers. Based on a literature review of 75 research reports, expert opinion papers and clinical protocols, we provide a synthesis of what is known about the communication of cancer risk information and make recommendations for the enhancement of knowledge and practice in the field.

Section snippets

The context of providing cancer risk information

Apart from obtaining population-based information about risk factors for cancer, to date, there are limited opportunities for obtaining accurate personalized information regarding one's risk. Based on clinical observations 3, 4, and a limited number of studies focused on attitudes of the general public 5, 6and first-degree relatives of cancer patients 7, 8, 9, a marked predilection for risk information is evident, particularly in the form of testing for cancer susceptibility (i.e., genetic

Providing risk information

Although risk is a commonly encountered concept in the health sciences, diverse notions of it have varied across disciplines and between professionals and the general public. Hansson [21]pointed out that experts treat the term as a unidimensional, technical concept that refers to a particular, known probability. The general public, on the other hand, attaches many meanings to the term. One of the most striking features of this incongruity is that there may be a vast difference between the

Communicating cancer risk information: what is required?

Clinical observations and research support a comprehensive approach to the communication of risk beginning with information on the risks, benefits and limitations of susceptibility testing to help individuals decide if they indeed want to proceed with testing [47]. When offered risk information, women at risk for breast cancer have been observed to want more than a risk figure. They tend to want background information about biology, cancer, non-genetic risk factors and emotional reactions to

Communicating risk when it is error prone

There are several aspects to predictive genetic testing that produce uncertainty or error. For example, variations in modes of inheritance, interaction between environment and genes, reliance on DNA markers prior to identification and cloning of the specific gene, errors in families' beliefs about their biological kinship, and variations in quality control and accuracy within laboratories all compound the probabilistic nature of screening results 26, 59.

How then should tests results be

Sequelae of communicating risk information

Information about risk can be important in motivating individuals to engage in cancer screening behaviours. Yet serious concerns have been raised about the psychosocial sequelae associated with cancer risk information [62]. Issues and questions have primarily been based on anecdotal evidence and speculation, in the absence of a large number of well designed empirical studies to document psychological reactions to genetic testing (for reviews see Croyle and Lerman [63]and Macdonald et al. [64]).

Current status of communication strategies

There is great effort underway to develop effective communication strategies for counselling related to cancer risk 49, 55, 77, 78, 79, 80, 81. Guidelines and policies for genetic services and the dissemination of health-risk information are being developed by groups in Canada (e.g., Canadian Collaborative Group for Cancer Genetics), the United States (e.g., Cancer Genetics Studies Consortium; the National Institutes of Health Task Force on Genetic Testing), and the United Kingdom 82, 83.

What works in practice?

The first prospective randomized trial of breast cancer risk counselling for women with family histories of breast cancer has been published recently [105]. Although the breast cancer risk counselling protocol did not include genetic testing, the results are relevant to this review. Using a combination of scripted oral presentations and visual aids, the risk counselling approach included: (a) discussion of individual factors associated with cancer risk; (b) provision of individualized risk

Recommendations

The research literature and the experience of experts in the field point to several recommendations for the enhancement of knowledge and practices related to communicating cancer risk information.

  • A variety of innovative, easily accessed and economically feasible communication strategies need to be developed and tested to meet information needs of the general public. The increasing demand for cancer risk information will not emanate solely from high risk families. Individuals and families who

Conclusion

Many questions remain unanswered about how to sensitively and effectively communicate cancer risk information to individuals and families at risk for familial cancer, as well as those who are not. There are no clear directions about how to ensure that the probabilistic nature of risk estimates is accurately communicated and understood. Additionally, there is uncertainty about how to sensitively communicate the error-proneness of genetic tests. If clients are to be fully informed about their

Acknowledgements

Funding for this project was made available through a grant from the National Cancer Institute of Canada. Support from the National Health Research and Development Program through a National Health Research Scholar Award to Dr. Bottorff and the Medical Research Council through a Postdoctoral Fellowship to Dr. Ratner is also acknowledged.

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