1.  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 of, for instance:

  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;

  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 that 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 in which participants were randomised without being told, a procedure that would have been illegal elsewhere (for instance in Denmark).

  We guess 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 already have a copy.

2.  COMPLEMENTARY MEDICINE

  Cancer patients often find much solace and comfort from complementary therapies that 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 the therapies were provided routinely as part of 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. There is also a place for some alternative treatments, perhaps when all else has failed, provided that clinical responsibility is taken by an NHS oncologist, and some members of this committee have already signed the EDM on Integrated Cancer Care tabled by Nicholas Winterton. Again, research methodologies for such interventions need to be both imaginative and appropriate, and urgently need funding.

3.  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 connection 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. We know that breast cancer 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 interest of the pharmaceutical industry to sponsor research into prevention, except when there is a notion that a drug might show promise. It is pharmaceutical companies that make the agro-chemicals as well as the anti-cancer drugs: they are not interested in seeing a decline in the incidence of cancer. So research into aetiology and strategies for prevention must be funded independently, and 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.

21 June 2000