Children with genetic diseases: who should pay?

Children with genetic diseases: who should pay?

1614 Smoking in the workplace SIR,-In 1978, in its sixth annual report to the US tobacco industry, the Roper research company wrote about passive s...

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1614

Smoking

in the workplace

SIR,-In 1978, in its sixth annual report to the US tobacco industry, the Roper research company wrote about passive smoking: "This we see as the most dangerous development to the viability of the tobacco industry that has yet occurred".1 In Australia, total bans on smoking in workplaces are being introduced with great haste after two court cases: one in which the judgment was that passive smoking caused lung cancer, respiratory disease, and asthma ;2 and the other which awarded$85 000 to a woman whose asthma became worse after prolonged exposure to passive smoking in her workplace (ref 3 and June 6, p 1406). On Sept 27, 1978, the same year as the Roper advice to the American tobacco industry, William Hobbs, a president of the tobacco multinational R. J. Reynolds was quoted in the Financial Times as saying of anti-smoking measures, "If they caused every smoker to smoke just one less cigarette a day, our company would stand to lose$92 million in sales annually. I assure you that we don’t intend to let that happen without a fight". In 1988, the Australian Commonwealth Public Service banned

smoking in all its offices. Six months before the ban, smokers in forty-four buildings were surveyed and followed up six months later. The average smoker reduced smoking by 5 18 cigarettes in 24 h. Heavy smokers reduced by 7-9 cigarettes-a 27% decrease. There was little catch-up compensatory smoking measured over 24h.4 The table shows calculations of the loss in sales that bans on smoking at work would cost the industry in Australia if 90% of indoor workplaces go smoke free: Office and indoor workers in Australia Percentage of smokers: 24-7 Mean daily reduction in smoking after workplace smoking ban: 5-18 Multiplied by 230 working days/year

4600 000 workers. 1136 200 smokers. 5885 000 cigarettes per day 1353 700 000

cigarettes

per year

Assuming 90% of indoor workplaces go

1218 300 000 cigarettes per year Multiplied by 14 cents per cigarette$170 562 000 less sales Proportion of retail price going to$73 342 000 less revenue smoke free

industry: 43% This

to

industry per year

-

reasonable. An April, 1992, survey of the prediction leading 139 companies in Victoria before the civil court ruling found that 58% had total bans, with 36% more having partial bans. Two-thirds of the companies had introduced their current level of restriction after the Federal court ruling in 1991.2 The civil ruling has already precipitated substantial further bans, including bans at all major Australian airports. No doubt the international tobacco industry has made similar calculations. This is likely to be the main reason why the industry so vigorously works to obfuscate the evidence on passive smoking and health and to promote voluntarism in workplace smoking policies. seems

Department of Community Medicine, Hospital,

Westmead

When the Association asked its counsel if it should continue to give advice or could it win the suits the attorney said, "You can win the suits, but you can’t afford it". For this reason, therefore, the advice the California Medical Association panel has been giving to physicians has been suspended, as have many other efforts to advise physicians as to what are regarded as good practices. Department of Neurosurgery, The Bowman Gray School of Medicine, Medical Center Boulevard, Winston-Salem, North Carolina 27157-1029, USA

Keeping

up with

a state

medical

the journals

SIR,—We were taught in medical school that the best way to keep up with recent advances in medicine was to read journals. But with the increasing trend of quantification in medicine, might it be good to estimate what is an adequate amount of reading? Thus, how much daily reading should the busy professional aim to achieve? For the past 9 years and 2 months, I have read the Journal of the American Medical Association from cover to cover. That is equivalent to 440 issues. At an estimated complete reading material (ie, exclusive of advertisements) of 50 pages per issue (which is, quite likely, an underestimate), I received 22 000 pages during this period. Dividing by the number of days during the past 9 years and 2 months, I obtained the surprisingly low figure of 6-5 pages per day. On the other hand, since the first issue of October, 1990,have been reading The Lancet from cover to cover, and with calculations similar to those above, I come up with 8.86 pages per day. This is an average of 14-36 pages per day since starting to read The Lancet and a "weighted" average since April, 1983, of 8-11 pages a day. Now, if to this I add the assorted journals that I receive but just glance at (including New England_7ournal of Medicine) and to this, finally, the innumerable number of publications related to my specialty (that being preventive medicine and public health) that I get and sometimes read (Morbidity and Mortality Weekly Report being the one that I read consistently) I can confidently say that I have followed my mentors’ dictum in medical school: "Thou shalt ...

[with the literature]".

SIMON CHAPMAN 1544 Saragossa Avenue, Coral Gables, Florida 33134, USA

1. The Roper Organization Inc. A study of public attitudes toward cigarette smoking and the tobacco industry. Vol 1, May, 1978. 2. Chapman S. Australian court rules that passive smoking causes lung cancer, asthma attacks and respiratory disease. Br Med J 1991; 302: 943-45. 3. Clifton B. Total smoke ban. Daily Telegraph Mirror (Sydney), May 28, 1992, p 1. 4. Borland R, Chapman S, Owen N, Hill D. Effects of workplace bans on cigarette consumption. Am J Public Health 1990;; 80: 178-80.

Guidelines for doctors in North America SiR,—Ienjoyed your May 16 editorial (p 1197), and was particularly struck by the last paragraph in which you said, "The solution is straightforward: consensus guidelines on guidelines are required". Being a physician in the USA, I am more aware of this, perhaps, even than the British are, but one of the things that you may not know is the terribly oppressive legal atmosphere in which medicine functions here. The Californian Medical Association for years had a panel consisting of 20 or 30 distinguished individuals who answered many

questions and expressed opinions which

EBEN ALEXANDER

HE, Ramsey LL. The perils of providing medical opinion: association’s experience. West JMed 1991; 155: 183-85.

1. Williams

keep up

Westmead NSW 2145, Australia

loumal of Medicine (which is a very good journal).l These were well accepted until, suddenly, a suit was brought against the California Medical Association because a physician who was doing carotid body removals at the bifurcation of the carotid arteries for asthma said that the advice the Association panel had given-namely that this was, at best, an experimental procedure and, therefore, should not be covered by a third party-was harmful to his practice. Although, after 4 years, the California Medical Association won this suit, it cost them several hundred thousand dollars to do so. In the meantime, another suit of similar sort appeared which again was won by the Association but at the cost of a great deal in legal fees.

were than passed by the board of directors of the Association and published in the Western

Children with

HENRY T. WASSERMAN

genetic diseases: who should pay?

IR,—Mr (oums (May 2:5, p DU2) raises the issue ot the extra incurred in the surgical care of Jehovah’s Witnesses. In particular, he wonders who should meet these costs-should it be society as a whole or the Jehovah’s Witnesses (collectively or costs

individually)? We would like to draw attention to the possible application of this question in clinical genetics. Ifa couple decline to accept the offer of prenatal screening tests in a pregnancy, and subsequently have a child with Down’s syndrome or neural-tube defect, should they be charged the costs of providing medical, surgical, and social (community) care for their child? Ifa family is known to be at high (1i in 4) risk of having a child with cystic fibrosis or Duchenne muscular dystrophy, and declines prenatal diagnosis or the termination of an affected pregnancy, should it be expected to meet the costs of caring for the child?

1615

Such issues, in the context of the provision of care for children with problems that were potentially "preventable", have already been raised in North America, and have been related to cases of "wrongful life", and to health insurance provided by employers.’ Do we want to see this happen in Britain too? If society answers Collins’ question by charging the cost of refusing blood transfusion to Jehovah’s Witnesses themselves, will the provision of nationalised health care for children with genetic disease be similarly restricted? Will National Health Service (NHS) care be denied to those whose parents are labelled as irresponsible because they have declined to take part in prenatal diagnosis or screening, or because they have declined to terminate a pregnancy at high risk of some disorder? Will budget-holding general practitioners seek to remove from their lists those families that refuse antenatal screening? The reasons for declining to participate in such programmes, of course, may vary-but these reasons are

HIV infection in Victoria, and a social justice payment was added for those people whose cases in law were weakest. Group settlement in late 1991, despite grossly disparate payments for equally infected people, has resolved much of the anger and divisiveness that was destroying our patients and our centre. The enormous relief, consequent upon settlement, which is shared by patients and their carers, allows patients to plan for quality, not merely in financial terms, in their shortened futures. The gloomy days of HIV disease remain but the distress of litigation no longer affects the immune system.

quite irrelevant if a "medicine of the bottom line" is all that the NHS will seek to provide. The restriction of access to health care in such circumstances could doubtless be justified as the promotion of autonomy and responsibility; appeals to autonomy in this sense (of self-reliance, rather than self-determination) are used to justify cuts in public services by those inclined for political reasons in that direction.2 In addition to these questions of principle, there is also a practical question to be addressed. Do Jehovah’s Witnesses really cost the NHS more, on average, than other citizens? Or do they make less use of it, perhaps dying sooner after trauma, or just preferring to avoid contact with contemporary medicine for minor ailments ? If so, they may actually be saving NHS money. If they, or some other identifiable group, in fact consume fewer NHS resources than the average, should they then pay less tax than the rest of the

SjR,—For the newly qualified junior hospital doctor the stresses and strains of final examinations pale into insignificance when compared with the prospect of the first day of August, this being the start, in the UK at least, of "house jobs". Much folklore and handed-down anecdotal tales abound about this, possibly the most stressful and eventful month of the houseman’s year. The psychological and emotional impact on the new graduate is well documented/,2 but what of the organic signs? We sent a two-part questionnaire about diet and weight to all (102) doctors who graduated in 1991 from the University of Leicester. Part A was completed within the first week of August and part B in the first week of September. 61 forms were returned for part A and 48 for part B. Data for analysis were thus available for 31 women and 17 men (age 22-30, mean 23 years). No subject was actively dieting during the period under consideration. About two-thirds (30) lost weight during their first four weeks as a houseman; 10 gained weight; and 8 remained the same weight. 19 women and 11 men lost an average of 2-6 kg (range 0’4-6-4). Of these, 28 thought their diet had been adversely affected by their job and 2 thought not. 17 had found their hospital canteen unacceptable whereas 13 thought it was acceptable or good. Common reasons given for weight loss were lack of time for eating and increased energy expenditure. 8 women and 2 men gained an average of 1 -7 kg (04-1). 7 had found their diet to be adversely affected and 3 had not; 6 found the hospital canteen unacceptable; and 4 thought it was acceptable or good. 4 women admitted to a partiality for chocolates, which were readily available on the ward and were therefore consumed more liberally than usual. Of the 4 men and 4 women whose weight remained stable, although all thought their diet had been adversely affected by their job, all, surprisingly, found the food in their hospital canteen acceptable. The year spent as a houseman is the subject of two witty novels3,4 which are read avidly by medical students. The year is not all roses, however, and many find the hours long and arduous. Chronic tiredness, lack of support, and a feeling of being uncared for, among others, contribute to stress. The stress and pace of the job also leads to a change in diet, as shown in our series where 43 of the 48 (90%) thought that their diet was adversely affected and 62% did lose weight. That the weight loss was almost certainly occupational is probably not in doubt. Does this then commend house jobs as a way to diet? In the short term, perhaps yes; in the long term, thankfully

population? We believe that health care should be provided for all, irrespective of race or religion, and with full respect for any constraints imposed by the patient on the grounds of their religious, moral, or cultural beliefs or customs. To make any other decision would be a violation of human rights, of medical ethics, and of the obligation of our secular society to respect the various sets of values of all its citizens. Institute of Medical Genetics, University of Wales College of Medicine, Cardiff CF4 4XN, UK

ANGUS CLARKE CARINA WALLGREN-PETTERSSON HELEN E. HUGHES

Billings PR, Kohn MA, de Cuevas M, et al. Discrimination as consequence of genetic testing. Am J Hum Genet 1992; 50: 476-82. 2. Chadwick R. What counts as success in genetic counselling? Med Ethics (in press). J 1.

Compensation for medically acquired AIDS SiR,—Iwould expand Mark Ragg’s (Feb 15, p 419) comments about compensation for medically acquired AIDS in Victoria, Australia. Claims made since 1985 by haemophilia patients, infected with HIV, against State and Federal Governments, as producers and administrators of contaminated plasma concentrates, were almost completely disregarded. The Federal Government had set up a "token" trust in 1990 with staged minimum payments. Patients sought further legal retribution, having been inflamed by Government advice that this was their only recourse. The haemophilia community was deeply divided in taking such action not only between HIV infected and uninfected factions but also within the infected group. Many were deeply embarassed about suing their haemophilia treatment centres in three-way suits against hospital, Red Cross Transfusion Service, and Commonwealth Serum Laboratories. A landmark court case was brought in Victoria, the only state to have a jury for civil cases, in 1990. It was won by the plaintiff against a haemophilia treatment centre only. This case was noteworthy not

only for the verdict but also for the notoriously high legal costs disbursed from state-funded legal aid and other public sources. A formula, based on legal likelihood of successful case prosecution, was crafted for out-of-court settlements in South Australia in 1991. This model was applied to all known cases of transfusion-related

Haemophilia Treatment Centre, Alfred Hospital, Melbourne, Victoria 3181, Australia

Acute

weight reduction

ALISON STREET

in junior doctors

not.

Department of Surgery, University of Manchester, Hope Hospital, Salford M6 8HD, UK

N. WILLIAMS G. K. ROSE

DI, Gruzelier JH. Adverse changes in mood and cognitive performance of house officers after night duty. Br Med J 1989; 298: 21-22. 2. Dudley HAF. Stress in junior doctors. Br Med J 1990; 301: 75-76. 3. Colin Douglas. The Houseman’s Tale. London: Canongate Publishing, 1975. 4. Samuel Shem. The house of God. NSW: Transworld Publishers, 1985. 1. Orton

Safety guidelines for use of nitric oxide SiR,—There is interest in inhaled nitric oxide (NO) as a pulmonary vasodilator which, unlike intravenous pulmonary vasodilators, does not affect the systemic circulation.l-3 One suggestion is that inhaled NO may reduce intrapulmonary shunting