1196 into play. Of these the most important is value. Value as a term does not stand on its own: we have to define our yardstick. A project may be valuable in helping to define a biological process: it may be valuable in answering a question about how patients should be treated. How the relative value of these projects can be judged by the same group of assessors is difficult to see. Given a valid and original project, the basic scientist will form quite a different judgment from the clinician because the objectives of the two often differ. The sort of problems that a clinician wants to resolve would probably rate very low with a basic scientist. Likewise a clinician may not be in a position to judge the possible longterm value of a project in basic science. Like beauty, good science is in the eye of the beholder. It is a pity that the J3Af correspondence did not acknowledge the MRC’s recognition of clinical research in other areas. For instance, there are the multicentre trials in hypertension and leukaemia which contributed substantially and immediately to clinical practice. The issue was narrower than the correspondence suggested: it centred on MRC support for clinical departments rather than for clinical research. Having said that, I find it difficult to see how the MRC can be absolved from all blame in this context: least of all can lack of quality either in departments or in individuals be used in selfjustification. The leading grant-giving body for medical research can hardly deny all responsibility for the quality of clinical research in this country. If there are no clinical scientists of sufficient standing to become directors of MRC units, this must reflect the unattractiveness of the career for talented people: if the garden is not particularly rosy, we can reasonably direct inquiries to the gardener. Clinical research should be at its zenith. The general view in the United Kingdom is it that it is at its nadir. The large territory that lies between the practice of science and the practice of medicine should indeed be fertile ground with remarkable advances in each. Instead for many academics it has become a disturbing no-man’s land. As a result individuals and departments have tended to move increasingly to one side or another. Some have settled for clinical work, teaching, and examining, and research has been abandoned. In some teaching hospitals, apart from the fact that the head of the department is called a professor, there is nothing to distinguish the activities of the university departments from those of an NHS department. The danger is that the next step is for the teaching hospital to dispense altogether with university departments and revert to the system for teaching medical students that existed earlier this century. In other cases individuals have fled to the laboratory and sought to compete with the basic scientists in the type of problem being studied. This has reached its logical outcome in the suggestion that clinical research should be divorced from specialist clinical work as a separate specialty.s Sometimes this approach has resulted in valuable work. However, by losing contact with modern specialist clinical practice, the advantage of a medical training (ie, the application of scientific method to disease) has been lost by such individuals whose contact with the disease they are studying is secondhand and dependent on the goodwill of others. What should be on offer to the intending clinical scientist is a clear career in a department that combines the highest standards of clinical practice with equally high quality scientific research. come
CONCLUSIONS
Some of the problems for clinical research are unavoidable. Other constraints such as those of funding are potentially
reversible given more favourably disposed politicians and the articulate expression of a very strong case. The "Save British Science" campaignl4 is an excellent move in this direction. Clinical scientists must not allow themselves to be left behind wfien the climate improves. Most of all they should be clear themselves what they are trying to achieve. University departments in particular need to clarify not only to others but also to themselves what the objectives of clinical research are. If not, after a few miserable years, the rump risks being swallowed by the Leviathan of basic science on one hand or clinical practice on the other. Most of all they need to establish that the clinical scientist has an essential role in medical research and that neither, the non-medical scientist nor the full-time clinician, can replace him. If this case is not stated, there is a risk that this experiment will be attempted. This
was
written whilst I served as visiting L. J. Beilin’s department.
professor
at
the
Royal Perth
Hospital in Prof
REFERENCES 1. Editorial. Academic medicine-threatened institution. Lancet 1979; ii: 677-78. 2. Clinical Research Centre Committee. Report to the Medical Research Council, January, 1986. London: Medical Research Council, 1986. 3. Dickinson CJ. Stagnation and despair in medical research. Br Med J 1985, 290: 337-38. 4. Annual Review of Government Funded R and D 1985. London: HMSO, 1985. 5 Booth CC. The Stoker report and the future of Northwick Park. Lancet 1986, i:372-74. 6. Flexner A. Medical education in Europe: a report to the Carnegie Foundation for the Advancement of Learning. New York, 1912. 7. Swales JD. Interpreting ion transport studies m hypertension: methods, myths and hypotheses. J Hypertension 1983; 1 (suppl 2): 391-94. 8. Holland WW. Teaching hospital in crisis: expensive luxury or vital asset? Lancet 1984; ii: 742-43. 9. Jennett B. Stagnation and despair in medical research. Br Med J 1985, 290: 854. 10. Irving M. Two nations at the MRC? Br Med J 1986; 292: 134-35. 11. Gowans J. Two nations at the MRC? Br Med J 1986; 292: 200. 12. Dudley H. Two nations at the MRC? Br Med J 1986; 292: 200-01. 13. Dobbing J. Two nations at the MRC? Br Med J 1986; 292: 338. 14. Anonymous. Save British science: A crisis in research. Lancet 1986; i: 166.
General Practice SERVING TWO MASTERS: A DILEMMA IN GENERAL PRACTICE P. D. TOON
Department of General Practice & Primary Care, Medical Colleges of St Bartholomew’s and The London Hospitals
E. J. JONES Jubilee Street Practice, Steels Lane Health Centre, Commercial Road, London E1
Summary
practitioners are the custodians of large quantities of confidential information, General
and they are often asked to use this to furnish reports for third parties. The implications of consenting to the disclosure of information for such purposes are frequently ill understood by patients. If there is a possibility that such disclosure may disadvantage the patient, the doctor should discuss the matter personally with the patient before releasing any information. INTRODUCTION
THE function of the general practitioner, whether in terms of duty or of consequences, is to benefit his patients. In order to fulfil this function adequately, doctors collect from their patients, and with their consent, large amounts of personal and often highly sensitive information. This information is given on the understanding that it is confidential. The principle that "Whatever ... I see or hear, in the life of men,
1197 1 which ought not to be spoken of abroad, I will not divulge"’ dates back to Hippocrates and has been reaffirmed in every major code of medical ethics.2-5 General practitioners pride themselves on being able to offer their patients continuity of care. In a stable community the same doctor may care for individual patients for 20, 30, or even 40 years. It is still not uncommon for a doctor to care for a baby whose mother he or she has also cared for from birth. A large amount of information about a patient is collected over such a long period. Even in more mobile families, notes are transferred from practitioner to practitioner, so that many patients have records going back to their childhood. These data are useful to the doctor, but people other than doctors are also aware of their value. Doctors are often asked to complete forms or furnish medical reports for third parties, such as life assurance companies and prospective employers. It is generally agreed that doctors are entitled to disclose confidential information if the patient gives consent.6 Since the purpose of confidentiality is to protect the patient, respect for the patient’s autonomy makes this a logical exception. It
is, however, generally agreed also that to be valid such consent needs to be free and informed, and obtained "without undue influence".’ Whether this is always so in these requests needs careful consideration. Although there has been extensive discussion of the criteria for informed consent to medical treatment,8 there has been relatively little consideration of the parallel issue of consent to disclosure of information to third parties. The doctor’s responsibilities to such third parties also merits attention. INFORMED CONSENT
Requests for information from life assurance companies and from employers and lawyers usually arrive accompanied by a written slip signed by the patient authorising disclosure of his or her records. Although this appears to justify completely any disclosure the doctor may make (and probably does so in law), its ethical status is uncertain for a number of reasons, as the cases below illustrate.
Case-reports Case 1.-A life assurance company requested a medical report in respect of a 50-year-old man. He had had a severe drinking problem for many years, and at one time had been a "down and out" alcoholic. 8 years previously he had stopped drinking and had remained "dry" ever since. When telephondd by his GP he had no idea that his past drinking history was relevant and would have to be disclosed. When told the likely outcome, he decided not to proceed with the
insurance. Case 2.-A clerk in his mid-thirties had been diagnosed has having multiple sclerosis in the past, although it was now quiescent. He had mild symptoms and no neurological signs. He, too, was unaware that his diagnosis would have to be disclosed if a report was given by his GP. After discussion he elected to go for an independent medical assessment. Case 3.-A 35-year-old homosexual man became anxious about AIDS and sought from his GP an HTLV-III antibody test. This was negative. A few months later he sought endowment insurance, which was refused after a medical report. Although he had signed a consent form, he was surprised to be informed that his GP may have disclosed the fact that he had identified himself to his GP as being at risk of AIDS. This was the only fact in his medical history which seems likely to have led to the refusal.
Case 4.-A civil servant contracted hepatitis B while travelling to Africa on business. He signed a consent form for life assurance purposes while convalescing from that illness before the virus had cleared. He did not realise that this might lead to loading or outright rejection. Comments
Although written, the consent to disclosure in is frequently neither free nor informed.
life It is not free in that it is a condition of the sale of the service which the client requires (or is presented as such) and it is not informed in that the consent is obtained by a lay person who does not necessarily explain to the patient the implications of the consent, or what questions will be asked of the GP. In contrast to the procedure for obtaining consent to a medical or surgical procedure, the person seeking the consent is governed by no ethical code other than his or her own. Although in the majority of cases this is no doubt impeccable, there is nothing to prevent a busy official from presenting the consent to disclosure as just another part of the paperwork. Many people seem not to realise that the questions asked are likely to cover psychological and social factors as well as physical health. Many people seem not to realise that information given to one GP will usually be automatically passed to his successor. Many people are unaware that to be refused life assurance affects their insurability permanently; a question asking whether the patient has ever been refused assurance or charged at a higher rate appears on almost all proposals. The change in role of general practitioners when completing such a form does not seem to be well understood by patients. In this situation doctors are not acting on the patient’s behalf but are responsible to (and paid by) the insurance company or employer involved.
assurance cases
GUIDELINES FOR GENERAL PRACTITIONERS
How can a GP act properly to safeguard a patient’s interests in these matters? There is no easy solution-to refuse to disclose any information may mean that the patient will be the main loser,9 to accept the written consent at its face value is equally unsatisfactory. Some of the actions which would make things easier are outside the individual doctor’s
control-for example,
an agreed ethical procedure for insurance companies to obtain informed consent to disclosure of medical records, or the more widespread use of independent doctors as medical assessors in such situations. However, these solutions require political action, and that is not likely to be forthcoming. The status quo suits the employers and insurance companies, being cheaper than collecting the information they require from scratch; and medical politicians have more important battles to engage their time. While these difficulties persist, we suggest the following
guidelines: 1. Never accept the written consent as being informed Contact the patient, by telephone or by calling him or her to the surgery, to ensure that he or she understands the implications of disclosure and recognises and accepts the change in the doctor’s role8 in agreeing to give the report. 2. In all cases, even if consent is given, act to protect the patient’s interests.2-4 This may mean advising him or her not to proceed with the insurance, or refusing to furnish a report and thus compelling the company or employer to obtain an independent medical opinion. On the other hand, if there are no forseeable problems the patient may find it more consent.
1198 convenient to have a quick report from a GP than to undergo tedious and time-consuming independent medical examination. 3. When a doctor agrees to give a report, there is a professional obligation to be accurate and truthful; but there is no obligation to agree to give such a report. In some situations it may be in the patient’s best interests, and may protect the doctor’s conscience, to "regret that I am unable to supply the information you require". No procedure or rules can avoid ethical dilemmas, but considering the issue in the light of the above discussion will at least ensure that the best decision is made. As individual practitioners we can do no more, but by the hippocratic tradition we are obliged to do no less. a
Correspondence should be addressed to: P. D. T., Academic Department of General Practice, 2nd Floor, New Science Block, Charterhouse Square, London EC 1. REFERENCES
hippocratic oath, translated in Handbook of medical ethics. London: British Medical Association, 1980. World Medical Association international code of medical ethics. In: Handbook of medical ethics. London: British Medical Association, 1980. Ethical code of the Commonwealth Medical Association. In: Handbook of medical ethics. London: British Medical Association, 1980. Canadian Medical Association code of ethics. In: Handbook of medical ethics. London: British Medical Association, 1980. Resolution of the 27th World Medical Assembly. In: Handbook of medical ethics. London: British Medical Association, 1980. Handbook of medical ethics. London: British Medical Association, 1980: para 1.6. Handbook of medical ethics. London: British Medical Association, 1980: para 1.8. Faulder C. Whose body: The troubling issue of informed consent. London: Virago, 1985. Mabeck CE. Confidentiality in general practice. Family Practice 1985; 2: 199-204.
1. The
2. 3. 4. 5. 6. 7. 8. 9.
Occasional
Survey
ENDEMIC GOITRE IN CHINAMORA, ZIMBABWE THE CHINAMORA RESEARCH TEAM* survey of 3841 rural dwellers in Chinamora, Zimbabwe, goitre was found in 29%. There was associated moderate iodine deficiency, and 8 people out of a subgroup of 229 had biochemical myxoedema; 2 others had biochemical thyrotoxicosis. Thyrotropin levels were not raised in 100 children aged less than one year. There did not seem to be a role for goitrogens in the pathogenesis of the goitres. A nationwide iodinisation programme should be introduced in Zimbabwe.
Summary
In
a
regarded goitre (Gurokuro) as one of the six major health problems of their community. The cosmetic aspects of the deformity caused the most anxiety. Traditionally, goitre was not linked to any mental or physical condition, nor was there any prevailing view about its cause, in contrast to the beliefs held in other endemic goitre areas.2 According to Hetzel,3 however, cretinism and depression of intellectual function occur in areas where there is endemic goitre. The widely held belief of Zimbabwean doctors is that cretinism is uncommon there and there are no major medical consequences of goitre other than mechanical pressure effects and a predisposition to thyroid cancer. Goitrogenic foods, such as rape, cabbage, and onions are consumed in large amounts in Zimbabwe. Health workers have suggested that goitrogens may be involved in the causation of endemic goitre, as has been shown elsewhere in Africa.4 Prompted and encouraged by the local people who perceived that for once their wishes and a need for scientific clarity were in accord, we addressed ourselves to the following questions. What is the prevalence of goitre ? What is the level of thyroid dysfunction in the population? Is there evidence of "biochemical cretinism" in children aged less than one year? What is the iodine status of the population? Do dietary goitrogens cause goitre in Chinamora? METHODS
We selected for survey a ward with a population of 6900 (recent census) living in 34 villages (kraals). The survey team was composed oflocal secondary school grade-VI students who had been instructed by us on how to identify goitre and who were supervised by a medically qualified member of the research team. Details of the inhabitants of each kraal, whether every family member was seen, and the presence or absence of goitre were recorded. Children attending the four primary schools in the area were examined by trained medically qualified members of the team. Goitre prevalence varied between age groups but was 29% overall (fig 1). The school survey, in which we all took part, served as a subsample check of the accuracy of goitre detection by those engaged in the main survey in which some grade-I goitres seem to have been missed, and therefore the true prevalence is likely to be greater than 29%. 125 affected subjects and 125 age-matched and sex-matched controls were studied further. On the basis of dietary questionnaires the subjects were divided into high, moderate, and low goitrogen intake groups. A high goitrogen diet was defined as one in which rape was consumed twice a day plus any other goitrogen (cabbage or other brassica or onions) once daily; a moderate goitrogen diet as either rape twice a day and any other goitrogen once per week or
INTRODUCTION
ENDEMIC goitre, defined as thyroid enlargement affecting than 10% of the population, is present in many areas of Zimbabwe! (and personal observation). In common with other populations with endemic goitre those affected are subsistence-level peasants living on a high inland granitebased plateau where there is poor and eroded topsoil and more
N
erratic rainfall. We were therefore not surprised that the people of Chinamora, a communal area 50 km north-east of Harare, *Rosemary Jenesi, medical assistant, Makumbi District Hospital; Kelvin Makumbe, village health worker, Mawanga ward; Anna Munemo, village health worker, Mawanga ward; Johanasi Munemo, volunteer, Mawanga ward; Ajit Patel, student, University of Zimbabwe Medical School, David Sanders, senior lecturer, department of community medicine, University of Zimbabwe; Robin Stott, senior lecturer, department of medicine, University of Zimbabwe; Francis Tafaanyika, volunteer, Mawanga ward; Charles Todd, district medical officer, Makumbi District Hospital; Dawcus Tunha, volunteer, Mawanga ward; Ramnick Xavier, student, University of Zimbabwe Medical School.
Fig I-Prevalence of goitre.