WEDNESDAY 21 JUNE 2000

MRS HEATHER GOODARE

  563. I now call Mrs Heather Goodare from Crawley Cancer Contact and Breast UK.

  (Mrs Goodare) Thank you very much indeed. Good afternoon. I have already sent in quite a lot of written evidence on behalf of both Breast UK and Crawley Cancer Contact. I do not want to repeat myself but I want just to highlight three important issues which I think are prominent. The first is informed consent. Since we made the first written submission from Breast UK there have been several national scandals with regard to lack of consent for research procedures. In our local community too we have had experience for instance of a trial of three months versus six months chemotherapy for breast cancer patients for which a protocol was not submitted to the Research Ethics Committee. Also a trial of drug treatment for ovarian cancer for which REC approval had been gained but at least one patient had not been given either an information sheet or a consent form to sign. You may conclude that these are small hiccups of the kind which may occur in the local situation where things are not always as they should be. However, the principle of informed consent has not been fully acknowledged by even the most prestigious medical journals. Earlier this month the BMJ published a trial, not a cancer trial, in which participants were randomised without being told, a procedure which would have been illegal elsewhere. My guess is that these examples are the tip of the iceberg. It was to forestall practices such as these that Breast UK and CERES drew up the guidelines for ethical research with patients of which you have already had a copy. The second thing I should like to highlight is complementary medicine, which has been mentioned by other witnesses. Cancer patients often find much solace and comfort from complementary therapies, which appear to be of great benefit in helping them through their orthodox cancer treatments, both raising immune function and making them more relaxed. In Crawley Cancer Contact we offer such therapies on one afternoon a week and the work is done on a voluntary basis by qualified practitioners. We are carrying out an audit of our work and so far the feedback we have had from patients has been entirely positive. We feel that much more could be achieved if therapies were provided routinely as part of an integrated hospital or GP care. But managers will not purchase such treatments unless there is sound evidence for their efficacy. However, RCTs rarely offer appropriate methodology for such studies, which need to be qualitative, imaginative, should have patient defined outcomes, and urgently need funding. The third topic I should like to highlight is that of causes and prevention. It is good news that cancer mortality is coming down but we must find out why incidence is going up, particularly in the hormonally modulated cancers, breast, prostate and testis. We should find out whether or not there is a connection between exogenous hormones, particularly oestrogen mimicking chemicals, and breast cancer. Is there a link between increased use of agro-chemicals, hormonal growth promoters, antibiotics and so on and the increased incidence of cancer generally? We need to look at other environmental factors. In Crawley, near Gatwick airport, we have a relatively high incidence of breast cancer among women under 40[28]. We know that it is particularly common among air hostesses and we need to know why. We also need to know why the age of puberty is going down so fast in the UK, since this too is likely to impact on the development of hormonal cancers. It is not in the interests of the pharmaceutical industry to sponsor research into prevention except where there is a notion that a drug might show promise. Pharmaceutical companies make the agro-chemicals as well as the anti-cancer drugs. They are not interested in seeing a decline in the incidence of cancer. Research into etiology and strategies for prevention must be funded independently. This means a great deal more Government sponsorship of research. In the end this will be cost effective. Cancer prevention must make better sense than expensive palliative treatments in the last few months of life.

  Chairman: Thank you very much for a very clear presentation of your evidence.

  564. Would you like to hazard a guess about how much cancer is caused by environmental effects? People in the States quote that 80 per cent of cancers are caused by environmental onslaughts. Do you say that is true?
  (Mrs Goodare) I would not say that at all. No, I just think it is part of the picture. I do not know much about other cancers than breast, but in breast cancer there is a fistful of factors, early menarche, late menopause, late childbearing, HRT, oral contraceptives. All I am saying is that we need research to see whether or not the environment does impact. Certainly in Crawley, we are very near Gatwick Airport, there is a lot of pollution, and we have a lot of air hostesses, who seem to get a lot of breast cancer.

  Chairman: Thank you very much indeed for giving us your evidence so clearly.