Genetic counselling among Muslims: questions remain unanswered

Genetic counselling among Muslims: questions remain unanswered

THE LANCET Authorship credits Impact factor limits funding S IR —Neville Goodman (Aug 16, p 523) 1 points out that in a commentary in The Lancet, 2...

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THE LANCET

Authorship credits

Impact factor limits funding

S IR —Neville Goodman (Aug 16, p 523) 1 points out that in a commentary in The Lancet, 2 I am credited with the idea of listing the authors’ contributions, but that others preceded me. He is right: listing such contributions is an old idea. When I gave the opening address on this subject in Nottingham on June 6, 1996, at the Lancet/BMJ conference on authorship, I showed a slide with the names of nine groups who have, since 1969, made this suggestion. Since then, at least one author has claimed the idea as his own.3 I do not. What I claim to be original, with myself and my colleagues Linda Emanuel and Veronica Yank, are the parts of the plan necessary to make it work. The most radical is that the abused term author be abandoned in favour of contributor, leaving no distinction between authors and those acknowledged. We would also insist that the actual job done, as opposed to the contributor’s title, be disclosed, and the contributors be listed according to the proportion of work each did; and that there be guarantors who would take responsibility for the whole work. We would also work out a system for citation, indexing services and journal bylines. The Nottingham paper, greatly revised, has just been published.4 In Nottingham, I posed (on the same slide as the list) the question “So why don’t we do it?”. The reason is that it has taken a long time for the scientific community to accept that authorship is in crisis, because of multiple authorship and the dislocation of credit from responsibility. It has taken almost as long to realise that attempts to indicate contribution by the order authors are listed are doomed because the authors’ meaning is not disclosed to the reader. Finally, until now, approaches to make it operate have not been adequately worked through.5

SIR—Shortage of cash means that funds are targeted to areas where they are most effective. This process has to be based on some documented system. Universities in the UK have chosen as one of their criteria the impact factor of publication for awarding funds. If this criterion is to be the main indicator of research funding, then potential researchers should study the impact factor of journals. The review journals have by and large the highest impact factor. To write a decent review one needs to have been in the field for some time and publish in journals with lower impact factors, but if one has no impact factor, then funding is unlikely. Some of the most valuable contributions come from individuals with no impact factor credentials; for example, Korotkoff who observed changing sounds when an artery is compressed and gave the medical profession a simple method of measuring arterial blood pressure. According to the impact factor of journals there are some disciplines which should be avoided, such as gerontology, dermatology, and orthopaedics. Should funding bodies be influenced by the subject before them? I hope there will still be room for the imaginative lateral thinker with absolutely no impact factor to her or his name.

Drummond Rennie Institute for Health Policy Studies, School of Medicine, University of California, San Fancisco, CA 94109, USA

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Goodman NW. Authorship credits. Lancet 1997; 350: 523–24. Horton R. The signature of responsibility. Lancet 1997; 350: 5–6. Resnik D. A proposal for a new system of credit allocation in science. Sci Eng Ethics 1997; 3: 237–43. Rennie D, Yank V, Emanuel L. When authorship fails: a proposal to make contributors accountable. JAMA 1997; 278: 579–85. Rennie D. Commentary on “A proposal for a new system of credit allocation in science”. Sci Eng Ethics 1997; 3: 257–59.

Vol 350 • October 4, 1997

Clara Lowy Department of Endocrinology, Diabetes, and Metabolic Medicine, St Thomas’ Hospital, London SE1 7EH, UK

Biotechnology research SIR—In your July 26 news feature (p 270),1 Peter Mitchell reports on the rise and fall of biotechnology and provides specific examples of industry successes and failures. We want to clarify the role that Bayer played in the clinical trial for BAYX-1351, the antibody for septic shock. Mitchell states that Celltech plc (Slough, UK) developed the active compound for BAYX-1351, when, in fact, it was Chiron that developed the compound and licensed it to Bayer in 1989. Bayer had sublicensed the marketing rights for BAYX-1351 in France, Ireland, and the UK to Celltech as part of a separate agreement. On May 21, a shared announcement was made by Celltech, Bayer, and Chiron on the clinical trial results of BAYX1351. The announcement was issued to the media by Celltech in the UK, and on request only by Bayer in the USA. Additionally, Bayer announced the trial results to the worldwide team of medical investigators.

Bayer’s NORASEPT II (North American Sepsis Trial), which cost only a fraction of the £100 million cited, was the largest most complex trial ever conducted on sepsis. And although the full results of NORASEPT II did not repeat previous results and provide evidence of clinical efficacy for the treatment of septic shock, we believe a great deal of good has come from it. For instance, NORASEPT II remains a benchmark in clinical study design and execution for sepsis, and now, for the first time, a comprehensive sepsis database exists. Our hope is that the insights and knowledge we have gained over the past 10 years will have an impact on future sepsis research. As Mitchell points out, the drug development process is a high-risk enterprise and septic shock is particularly difficult. Developing an effective treatment for this complex syndrome requires many years of scientific research. Bayer knew the risk of developing a therapy for septic shock at the start of the venture more than a decade ago. The best outcome of the clinical trial for BAYX-1351 would have been a clear success, but the excellence of the trial’s design and execution gives us confidence that the hypothesis we sought to prove simply could not be proved. Dieter Maruhn Bayer AG, D42096 Wuppertal, Germany

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Mitchell P. Crash and boom: the rise and fall of biotechnology. Lancet 1997; 350: 270.

Genetic counselling among Muslims: questions remain unanswered SIR—I appreciate Nisreen ElHashemite’s (July 19, p 223)1 explanation of the Islamic viewpoint regarding prenatal diagnostic procedures and pregnancy termination for genetic diseases. It is not only Muslim minorities in the UK who show aversion for such procedures but also those elsewhere. As a prenatologist and practising Muslim, I have often found it difficult to offer comprehensive guidance for many Muslim couples here in Cameroon, where Muslims constitute 25–30%2 of the population. After explaining all about the disorder discovered in the fetus, the couples often remain silent, and then ask: “so what can we do, doctor? You said abortion? No, you know that is haram” (Arabic word for forbidden). And you may never see them again in your clinic. Even though El-Hashemite's explanations sound acceptable to a literate Muslim such as myself, they raise further questions. How do we convince our local Muslim population with a very

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THE LANCET

high illiteracy rate2 that Islamic juriconsultants (in London, Paris or other Western capitals) have found that it is permissible in Islam to terminate pregnancy before the time of soulbreathing (120 days, or 17 weeks) in justified cases? These people believe only in what their local Imams (Muslim leaders) utter, and follow that to the letter. Most of the Imams I have talked to are strongly against termination of life, be it preimplantational (some even oppose coitus interruptus, classifying it as abortion) or before breathing of the soul. The second difficulty is technical. If pregnancy termination on well-founded grounds is allowed in Islam before the gestational age of 17 weeks, then one wonders at El-Hashemite’s restrictive preference for preimplantation diagnosis, for which only a fraction of the patients requiring genetic investigations are candidates. To my understanding, it means other prenatal procedures (such as amniocentesis, chorionic villus sampling, &c) could also be undertaken and the fetus voluntarily aborted on the basis of detection of a genetic disorder, as long as the termination takes place before the first 120 days of gestation (17 weeks). It is also noteworthy that the exclusion of a genetic disorder at the preimplantation stage does not guarantee a healthy fetus. Other severe non-genetic morphological malformations, which can only be discovered later by ultrasound, could appear in the fetus. What advice do we offer to such Muslim parents when detection is too late to allow abortion before breathing of the soul? Should the mother continue carrying an affected fetus to term, while at the same time we offer non-Muslim parents in similar situations the option of abortion to the relief of affected couples? Hamisu Mohammed Salihu Ministry of Public Health, BP 3271, Messa, Yaoundé, Cameroon

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El-Hashemite N. The Islamic view in genetic preventive procedures. Lancet 1997; 350: 223. Prince Njiasse NA., L’Islam au Cameroun. Yaoundé: Association culturelle et Islamique du Cameroun, 1992.

Hypersensitivity vasculitis SIR—We appreciate Robert Swerlick’s and Thomas Lawley’s Aug 2 commentary1 on our article about hypersensitivity vasculitis (HV),2 but would like to answer some issues they raise about the possible effect of unavoidable selection bias in our study. We excluded 162 patients who had Henoch-Schönlein purpura (HSP). Because there is no gold standard for the diagnosis of HSP, these patients

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were classified according to the differentiation criteria proposed by Michel and co-workers,3 derived from the database collected in the multicentre prospective study of the American College of Rheumatology Subcommittee on the Classification of Vasculitis. As Swerlick and Lawley correctly point out,1 these criteria, which are based partly on the presence of extracutaneous involvement, could select those patients with less severe syndrome in the HIV group, thus creating a self-fulfilling hypothesis. Although this bias is possible, our published findings on the characteristics and outcome of 162 patients (46 adults) classified as HSP according to the same criteria do not support this contention.4 Although the proportion of patients with HSP who had extracutaneous involvement or who required therapy was higher than in the HV group,2 their outcome was equally good, even in adults. Swerlick and Lawley also voice concern about the exclusion of 55 patients with HV associated with other diseases, most of whom had a previous diagnosis of connective tissue disease (rheumatoid arthritis in 25, systemic lupus erythematosus in 13, and Sjögren syndrome in five) and the vasculitis appeared during a flare-up or as a side-effect of therapy.5 In a few patients with lupus or Sjögren syndrome, the vasculitis was the presenting sign, but they had clinical and serological abnormalities that allowed the diagnosis of their primary disorder. In patients with HV secondary to malignant disease, endocarditis, cryoproteins, or sarcoidosis, the vasculitis was the main presenting sign, but other findings, such as cardiac murmurs, fever, abnormal blood smear, indicated a severe underlying disease. With regard to the range of our patients, our university hospital is a referral centre for this province and several neighbouring provinces. In Spain, most patients with clinically significant diseases are referred to the hospital by their physicians, other hospitals, or self-referred through the emergency room. Therefore, our series reflects a mixture of patients: those attended in primary practice and in tertiary hospitals. We agree that the initial work-up for patients with HV should be guided by the findings of a complete clinical history and physical examination. So in patients without evidence of systemic involvement, underlying disease, or relapses, a simple work-up including a complete blood count with erythrocyte sedimentation rate, biochemistry profile, antinuclear antibody tests for occult blood in the stools, and urinalysis should suffice. Although a skin biopsy is essential for the diagnosis of vasculitis, we believe

that in children with a first bout of HV or patients with a known connective tissue disorder, the biopsy could be avoided. V M Martínez-Taboada, R Blanco, *V Rodríguez-Valverde *Division of Rheumatology, Hospital Universitario Marqués de Valdecilla, Facultad de Medicina, Universidad de Cantabria, 39008 Santander, Spain

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Swerlick RA, Lawley TJ. Hypersensitivity vasculitis—not always benign? Lancet 1997; 350: 306–07. Martínez-Taboada VM, Blanco R, Garcia-Fuentes M, Rodriguez-Valverde V. Clinical features and outcome of 95 patients with hypersensitivity vasculitis. Am J Med 1997; 102: 186–91. Michel BA, Hunder GG, Bloch DA, Calabrese LH. Hypersensitivity vasculitis and Henoch-Schönlein purpura: a comparison between the 2 disorders. J Rheumatol 1992; 19: 721–28. Blanco R, Martínez-Taboada VM, Rodriguez-Valverde V, Garcia-Fuentes M, González-Gay MA. Henoch-Schönlein purpura in adulthood and in childhood: two different expressions of the same syndrome. Arthritis Rheum 1997; 40: 859–64. Blanco R, Martínez-Taboada VM, González-Gay MA. Acute febrile toxic reaction in patients with refractory rheumatoid arthritis who are receiving combined therapy with Methotrexate and Azathioprine. Arthritis Rheum 1996; 39: 1016–20.

Pathology of love SIR—Frank Farnham and colleagues’ fascinating case report (Sept 6, p 710)1 omits the last part of the story: did the young man cease to adore his beloved after embolisation of his arteriovenous malformation? Can love be cured? Michael Phillips St Vincent’s Medical Center of Richmond, Sisters of Charity Health Care System, Staten Island, NY 10310-1699, USA

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Farnham FR, Ritchie CW, James DV, Kennedy HG. Pathology of love. Lancet 1997; 350: 710.

DEPARTMENT OF ERROR Randomised placebo-controlled comparison of ivermectin and albendazole alone and in combination for Wucheria bancrofti microfilaraemia in Haitian children—In this article by D Addis and colleagues (Aug 16, p 480), the last sentence of the Findings section of the summary should be “Systemic adverse reactions did not differ significantly between children who received ivermectin alone and those who were treated with ivermectin and albendazole”. HIV-1 infection associated with abnormal vaginal flora morphology and bacterial vaginosis—In this article by N Sewankambo and colleagues (Aug 23, p 546), the Acknowledgments section should have included the World Bank STI Uganda Project as one of the funders.

Vol 350 • October 4, 1997