BBC2 Antenna: "New Genes for Old" 13 July

Friendly neighbourhood boffins Being a salesman is not easy these days. In "New Genes for Old" the molecular biology group from St Mary's Hospital Medical School, London, attempted to sell the idea of gene therapy as the treatment of the future for inherited diseases like cystic fibrosis. It was a brave attempt. The spectre of Frankenstein hangs heavily over the mind of the general public, and the group clearly appreciated that it first had to dispel the notion of white coated boffins meddling away in ivory towers. There was hardly a white coat to be seen, and young women scientists with long dangling earrings or beautiful dark flowing hair were much in evidence.

Although the programme was partly a personal account of the group's approach to gene therapy, attempting to construct a minichromosome, it was really a programme for the people. It started with Professor Bob Williamson addressing, in a rather laboured manner, a group of patients, their supporters, and charity organisers at an open day at his laboratory. He proclaimed that gene therapy was going to be a major form of treatment for inherited diseases over the next 10-20 years. The accessibility of the scientists was emphasised by scenes of the visitors swarming over the laboratory watching the scientists at work and being shown actual-DNA, first as fluffy white stuff pulled out of a brown jar with forceps, then almost immediately-and a seeming inconsistency here-in a tiny test tube "looking like water." The nature of gene mutation, the pros and cons of gene therapy, and the ways it could be attempted were skilfully presented by the scientists, often with the aid of the patients themselves, and some ingenious, interactive, human sized models of cells and viruses. The science is rather complicated, but it came across well. Doctors were seen carefully

AIDS and ethics in Birmingham: a betrayal of trust D octors at the centre of the case of the Birmingham man alleged to have infected four women with the AIDS virus have emphasised their refusal to confirm his identity. Closer investigation, however, shows that the impression that the lead came from the media is a myth-a myth that conveniently disguises the breach of confidentiality by a member of the Birmingham AIDS team that really launched the recent furore. After the death from AIDS of a 20 year old woman in the city in early May, doctors came to suspect a link with a 24 year old haemophiliac who had refused to accept "safe sex" counselling. The prevailing sentiment among AIDS workers was summed up by one "source close to the case" who declared that "something must be done to stop this bastard" (Birmingham Post, 22 June). Somebody in the Birmingham AIDS team took it upon himself or herself and decided that the only way to stop him was to expose him in the press. The Birningham Post was contacted and provided with the full story. Health authorities in Birmingham had for some time been concemed about the low level of local public concem about AIDS given the relatively small number of cases in the area. West Midlands was one of several BMJ VOLUME 305


authorities which underspent its 1990 AIDS budget (by C2 8m). AIDS workers were also alarmed by the growing public scepticism about the real extent of the risk of heterosexual AIDS in Britain. Dr Bemard Crump, director of public health in Birmingham, condemned what he described as "irresponsible" press reports in recent months, which have played down the risks of heterosexual spread (Observer, 28 June). The Birmingham case provided the AIDS authorities with a focus around which to challenge what they regarded as mounting complacency about AIDS. Local AIDS specialist Dr Sue Drake said that she was "quite happy" that the case showed "very clearly that heterosexual AIDS is alive and

discussing with the scientists what type of patients would be treated and when. Issues of possible harm, and of humans acting as guinea pigs for treatment that initially might not be successful or of benefit to them, were not avoided. Cleverly, patients were shown in a discussion group evaluating these thomy problems for themselves and, subtly, it was a patient with cystic fibrosis who made the pronouncement that gene therapy as a prospect for the future "is brilliant." The programme had no TV front man: it was the professor who presented and commentated. Such a format was perhaps the least satisfactory aspect of the programme, for while the professor's casual, open necked shirt reinforced the "man in the street" image, he lacked the timing of a professional. His flow of words was often unremitting. Nevertheless, it was an accurate and comprehensive account, and I believe it may have allayed some of the anxieties the general public has about scientists haphazardly racing ahead with their research. "New Genes for Old" sold itself well.-MARY J SELLER, reader in developmental genetics, Guy's Hospital, London

well and being transmitted in Birmingham" (Daily Mail, 24 June). Hence it was not surprising that when the Birmingham Post's reporter Jason Lewis contacted the health authorities for an official response to his scoop, he found them ready to confirm every detail, apart from the man's name. Thus the story broke, on Monday 22 June, without the name. However, the Post's sensational front page headline"AIDS maniac with a mission to kill"provoked somebody into providing independent confirmation of his identity. Once the details of the case were publicly linked with a named individual the authority's continuing refusal to disclose the name became a mere formality. In their extensive press briefings the doctors and health authorities concemed emphasised several themes that were taken up in the wider media coverage. They condemned the "regrettable irresponsibility" of the man concemed; they discussed the possibilities of legal restraint; and they seized the opportunity to promote the safe sex message. The press amplified the doctors' moralising tone, subjecting the man's moral conduct to detailed, often prurient, investigation and comment. While the Guardian discussed publicising names and photographs of people spreading HIV infection, an editorial in the Sun declared that castration was one of a number of proposals that "merit urgent study" (23 June). Surveying the panic, Birmingham Aidsline manager Mark Bestell declared that "it is strange but I think this case could be a blessing in disguise" (Guardian, 26 June). By this time the man at the centre of the controversy and his wife had been forced to 259

The health authority has confirmed that there is to be no inquiry and no attempt to identify or discipline the "medical mole." The Birmingham affair reveals a tendency to regard HIV infection as more a moral condition than a disease. People suffering from other illnesses are regarded as deserving of sympathy from society and care from doctors. People with HIV and AIDS, by

go into hiding. Birmingham was said to be in the grip of an "AIDS panic" and local haemophiliacs experienced a sense of being further stigmatised. What Mr Bestell meant was that the panic fulfilled local AIDS workers' desires to "do something" to curtail one man's sexual activities. Furthermore it satisfied the wider need to revive fears about the heterosexual spread of HIV.



A tale of one city Christina M De Wind Kampala 1981 A mong the many cases of gunshot wounds this one I shall never forget. On a Saturday afternoon a nurse calls me. The newly arrived patient is a 12 year old boy, seated on a bench at the nurse's desk. History as usual: he was cycling around town when a soldier stopped him and wanted his bike. He resisted and was shot in the chest. When I open his shirt I can actually see the lung, part of the chest wall has been blow away. I say something about the memories this child will carry with him for the rest of his life, but the nurse's answer is simple, "Oh, Doctor, that is no problem. He will become a soldier and take revenge." Children in Kampala grow up with the idea that evil is normal. Uganda has just been liberated from Idi Amin's regime by Obote's soldiers together with their Tanzanian colleagues. The population should show its gratefulness and not resist or complain when a soldier takes what he likes. Radios, blankets, lamps, all are rewards for the liberators. The country is in total chaos and one thing only is clear: whoever has a gun has power. This is most obvious at the many roadblocks. All cars are stopped and unless the driver produces a bribe everybody's luggage is searched. Attractive items are confiscated. Often men are stripped naked and forced to lie face down on the grass. If anybody does not have enough money on him to satisfy the soldier he will be beaten. Moreover you can never be sure who actually stopped you. You can hire a soldier's uniform and gun for the day and operate your own roadblock. Going out after 6 pm is impossible. You will almost certainly lose your car and probably your life. The hospital compound is relatively safe surrounded as it is by a tall barbed wire fence. Hundreds of people, friends and relatives of staff, stay on the premises. Sanitary conditions are doubtful, there is no running water. Patients' safety, however, is not guaranteed. From time to time soldiers enter the wards and diagnose people who look as if they may have a gunshot wound as "guerrillas." These patients are then taken away "for better treatment." I always protest, which is 260

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completely useless and not without risk. One day I operated on a man who was shot in the abdomen. In the middle of the operation I received the message that the army had arrived to abduct the patient. I refused and they laid a cordon around the theatre. As soon as the operation was finished they took the victim away in the back of a lorry. We now put wounded people in isolation rooms with a notice "typhoid, infectious case." It helps. Nearly every day a member of staff will tell you that a relative has "disappeared." The army is in the habit of posting lorries on the roads to the suburbs in the moming and arresting large numbers of commuters on their way to work. They are taken to the

"We would all be happy and optimistic about thefuture if AIDS was not here. " barracks and selected. The poor ones are released and the obviously better off are labelled as "guerrillas" and kept until the relatives appear with money to get them out. But often a missing person will never be found again.

Kampala 1991 "When all the parents die what can the children say? When all the children die what can the parents say? Oh, AIDS, forgive us, forgive us. Oh, AIDS, forgive us, forgive us all." After boarding the minibus it takes me a minute or so to understand the words of the song on the radio. Children's voices sing a cheerful, rhythmic tune. The other passengers pay no attention. They know it all, the govemment sees to that by transmitting hourly warnings on Radio Uganda: "The next pretty girl will give you HIV." Meanwhile you hardly recognise the streets of this town. Since President Museveni came to power economy and security have improved radically. Shops and markets are open until late at night and crowded. Public transport is frequent and reliable. Small scale industry flourishes. Many products are made and displayed at the road side: fumiture, hardware, clothes, shoes, etc. The country produces its own sugar, tea, coffee, soft drinks, plastics, and toilet paper.

contrast, are judged according to the degree of their individual responsibility for their condition. The moralistic climate created by the AIDS panic enables health workers to justify violating the most elementary standards of confidentiality in the cause of promoting righteous behaviour, in one individual and in society at large. MNICHAEL FITZPATRICK, general practitioner, London


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We would all be happy and optimistic about the future if AIDS was not here. AIDS is not just another disease, it has changed life and death in Africa. It dominates the medical and social scene and there is no doubt that the economy will soon be affected. The Kampala blood bank tells us that 40% of the healthy population is already seropositive. In the hospitals the majority of medical admissions suffer from AIDS, and suffer terribly. Diarrhoea up to 30 times a day and an itching dermatitis never allow the patient any rest. Some are confused, some develop extremely painful anal conditions. They all cost society lots of money. HIV has changed the whole spectrum of diseases. We see more cancer of the cervix and lymphoma. Appendicitis is on the increase; should we blame a more Western diet or HIV? Tuberculous lymph nodes, a curiosity in the past, are now quite common. Anal conditions such as haemorrhoids, perianal abscesses, fistulas, and fissures are so common that I see at least 10 new cases every week. Many of these patients already have enough clinical symptoms to qualify as "clinical HIV." The govemment is open about the position and is active in preventive measures and education. Private charities and foreign aid organisations contribute. But the epidemic is now so overwhelming that we begin to feel defeated. Furthermore, the sensational aspects of the first years have worn off. I am afraid some Westem organisations will soon lose interest in us as there will be no such thing as a "good" result of their efforts. Finally, another child. This boy is 6 years old but looks about 3. He is not thin, just small. He has grossly swollen lymph nodes around his neck. Both parotids are painfully swollen, pus pours from the ears. A nonspecific cough and a mild diarrhoea are also present. What bothers him most is an itching and sore herpes zoster on his left chest. The mother begs me to remove the swelling of the neck. When I tell her the truth she bursts out in tears of anger. For her AIDS means sexual promiscuity. "But this is only a child, he has never done any sin." I agree, and as a Christian I try to tell her about God's love, which I always find extremely hard and embarrassing. The earthly father of the boy is unknown but he has a Father in heaven. "But I don't want him to go to heaven. He helps me in the shop, I cannot do without him." One thing has remained the same in the city. Our staff members still lose their relatives. This time it is not the army but the virus.-CHRISTINA M DE WIND is a surgeon in Kamnpala


25 jui.Y 1992

AIDS and ethics in Birmingham: a betrayal of trust.

BBC2 Antenna: "New Genes for Old" 13 July Friendly neighbourhood boffins Being a salesman is not easy these days. In "New Genes for Old" the molecula...
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