The benefits and risks of cancer genomics for society


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Title The benefits and risks of cancer genomics for society
Period 01 / 2004 - unknown
Status Completed
Research number OND1313569
Data Supplier Website Society-Genomics


BACKGROUND: The rapid developments in the field of genomics are expected to lead to a further increase in the potential for early diagnosis, the fine-tuning of prognostic features of specific tumors and the detection of cancer predisposition. Each new development, each new technique raises the question of how to assess its consequences for putative users. Little is known yet about how these genomics-related developments will affect the ways in which doctors, patients or the lay-public perceive, define and cope with cancer risks, diagnosis and therapy. In order to figure out how these new diagnostic tools might shape their likely future actions studies are needed of how aforementioned groups have used genetic information in the past and at present in conceptualising cancer risks and defining medical coping strategies. A thorough understanding of these dynamics requires methodologies to map the historical and the temporal dimensions. These dimensions cover the understanding of as well as the engagement with benefits and risks of cancer diagnosis and therapy related to genetic information within specific social contexts. The objectives will be made operational in two related studies, which will run parallel. The historical study will focus on mechanisms and patterns in the ways in which scientists, physicians, nurses, patients and the media have dealt with cancer risks and prognosis related to genetic factors and heredity. The qualitative research design includes study of archival and printed sources, interviews and the organization of a witness seminar. The second study, which concentrates on contemporary data, aims to explore and describe the dynamics of the understanding and coping by users of new genomics-related clinical technologies. The qualitative research design includes focus-group interviews and individual semi-structured interviews with stakeholders. The results of these interrelated studies will be jointly analysed and translated into a matrix model. This model envisages the information and communication on cancer related to genetic and genomic aspects in medical practice, the media and public health policy.
AIM: The aim of this research project is to study the past and present dynamics of the understanding of and engagement with cancer risks, risk factors and prognoses related to genetic and genomic aspects in medical practice, the media and public health policy in order to anticipate on how new genomics-related technologies might affect the perception and handling of cancer risks and prognosis by users. RESEARCH QUESTIONS:
- Which historical and current patterns and mechanisms can be mapped regarding the perception and handling of cancer risks, risk factors and prognosis related to heredity and other genetic aspects?
- What role did and do genetic information and professional and lay-men approaches to heredity play in the understanding of and engagement with cancer in the medical and public domain?
- What lessons can be learned for the development of genomics-related prevention and health promotion cancer programs? COLLABORATION: Close collaboration between experts from humanities and social disciplines and biomedical experts from the Cancer Genomics Centre safeguards the proximity to genomics research and the multidisciplinary angle. Moreover, the focus group approach of patients and professionals safeguards the inclusion of the users' perspective in generating imaginative and practicable input for communicating cancer risks and risk factors in the age of genomics.

Related organisations

Related people

Project leader Prof.dr. N.K. Aaronson
Project leader F.E. van Leeuwen
Project leader Dr. F.J. Meijman
Project leader Prof.dr. A.H.L.M. Pieters


D21400 Genetics
D23120 Oncology
D24000 Health sciences

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