Who should talk to patients with cancer about genetics?

BMJ 1997; 314 doi: https://doi.org/10.1136/bmj.314.7078.441 (Published 08 February 1997) Cite this as: BMJ 1997;314:441
  1. Wendy Chorley, Macmillan genetic nurse specialista,
  2. Kay MacDermot, Senior lecturer in clinical geneticsa
  1. a Clinical Genetic Department, Royal Free Hospital, London NW3 2QG

    Editor–Mutations in the recently identified BRCA1, BRCA2, MLH1, and MSH2 genes are associated with high risk of developing common cancers–namely, of the breast, ovary, and colorectum.1 2 As the general public is already informed in the popular press about the increased risk of cancer it is not surprising that the demand for genetic testing is increasing.3 The organisation, staffing, and funding of specialist breast and ovarian cancer clinics is a topical issue.

    Stoll stated that oncology nurses should staff specialist breast and ovarian clinics,3 whereas Campbell et al preferred the appointment of specialist genetic nurses with training in oncology.4

    However, doctors and nurses in all specialties caring for patients with cancer will be required to give information. We investigated how this group of health professionals responds to patients' inquiries about familial cancer by circulating a confidential questionnaire to 19 senior doctors and 14 nurses. The questionnaire was designed to obtain information on their general knowledge about cancer genetics, the clinical application, and their views on issues concerning genetic testing.

    Twenty questionnaires were returned from 10 doctors and nurses. On average each practitioner saw 150 patients with cancer a year. The survey showed an obvious dichotomy between wanting to provide information on genetics and further management and their inability to do so. Family history of cancer was not discussed routinely because of lack of time. Criteria for genetic testing or screening were not used. In addition, staff did not appreciate the associated issues surrounding genetic testing (impact on individual patients and their families and the need for confidentiality).

    Genetic units can and should provide continuing education and guidance on protocols for genetic testing and collaborate with specialties to formulate screening protocols. The organisation of a local multidisciplinary team to set up studies to evaluate genetic testing and outcomes of clinical management funded by the NHS research and development programme would ensure that each specialty's skills are used. Cancer genetic services will then become an integral part of clinical practice, as requested by the respondents to our questionnaire.

    The quality of information giving on cancer and genetics is directly related to the knowledge of professionals and their ability to communicate this to a patient regardless of their specialty. If they do not know the answer to a question they must be able to refer the patient to someone who does.


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