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More reasons for asking consent:
- Caroline (I don't have a middle initial) Richmond, London SW3 5AQ (20 September 2002)
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Use of archival diagnostic tissues
- Adrian K Charles (20 September 2002)
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Consent exception
- Carlos E. Poli de Figueiredo (21 September 2002)
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My views.
- Roger Lee (21 September 2002)
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Who's body is it anyway?
- Kevin J. Elks, Dr John Warren, Dr Peter Ball, Dr Abrey Sandman, David Smith, John Stevens, James Evinson, Paul Markham, Shelton Kartun, Tony Peters and Iris Fudge SRN (21 September 2002)
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Propective consent is impossible
- Terry J Hamblin (21 September 2002)
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Why not inform and invite objections?
- Peter N Furness, LE5 4PW (23 September 2002)
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Illogical
- Ann Tweddel (23 September 2002)
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Re: Use of archival diagnostic tissues
- Paul J van Diest (23 September 2002)
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Re: Why not inform and invite objections?
- Lizanne Duckworth (23 September 2002)
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inform, educate and enthuse
- Simon Knowles (24 September 2002)
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Am I the One?
- E Parsons (25 September 2002)
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Wasting waste tissue: a moral choice?
- Elliott Foucar (25 September 2002)
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Cultural Sensitivity
- Barry D Mahon (26 September 2002)
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Greed induced herd instincts
- Taliesin J Golesworthy (27 September 2002)
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Serum is body material too
- Daniela Zauli, Elena Manfredini, Sara Zucchini, and Alberto Grassi (27 September 2002)
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'Heart' versus 'head'.
- Martin J Duckworth (27 September 2002)
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Re: Re: Why not inform and invite objections?
- Peter N. Furness (2 October 2002)
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Patients do not like surprises like Mr. Moore got in 1980
- vijay Rajput, Camden, New Jersey, USA 08103 (17 October 2002)
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Benefits from using leftover tissue without consent
- Peter Horby, O Noel Gill (23 October 2002)
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The dog-in-the-manger generation
- (Dr) Trevor LP Watts (24 October 2002)
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Caroline (I don't have a middle initial) Richmond, freelance journalist home, which is: 1 Beaufort St, London SW3 5AQ
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Common courtesy demands it. There will be many people who will be pleased to be offered the courtesy of being asked to contribute to research, and to heve the pleasure of doing so. Ten years ago my sexual organs were removed without my consent. Most of the tssue was thrown away. Afterwards I was able to retrieve the six microscope slides which were retained. They are in a box and I have arranged that they will go in my coffin when I die. The film The Last Emperor records that the eunuchs asked for their sexual organs back so that they could be buried with them. |
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Adrian K Charles, Consultant pathologist WA
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The consent issue is problematic in pathology, the pathologists do not see the patients to get consent. We are having difficulty getting consent for use of tissue for teaching our junior pathologists, using excess tissue for controls for infectious diseases, for immunohistochemistry, for quality assurance and laboratory test development, all uses beyond diagnostic purposes. Some ethicists say every use should be informed. The ethicists also need to put a price on their ethics. If Dr Reye had not reviewed all those cases, then his syndrome would have taken longer to be recognised, yet more than 500 lives a year have been saved in the US alone from this. Most tumours have been recognised on retrospective review, the bad outcome cases obviously one cannot get consent easily, so therefore the scientific basis of the retrospective review of these cases is under threat of severe bias. Observations and small studies are being done less frequently, a junior with an idea has moved on before the ethics permission is granted, and these have formed the basis of many important discoveries. The way around this is to have these other uses on the consent form, as we do for childrens cancer, and have an almost blanket consent form that over 90% agree to. But this is not informed, as these tumours get entered into numerous studies that often have not even been started at the time of signing. To explain the epidemiological, therapeutic, molecular, and other studies in detail would be a huge problem. We rely on a pamphlet, but most parents have other things on their mind at this time, though later they are glad that work is being done. Every time I have a difficult case I review my previous cases, or from my slide collection, is this ethical without consent from the other patients, or is it just good practice? I sometimes only recognise cases from such a slide set case. We urgently need informed public debate about the many benefits and uses of these tissues. We are running into serious danger of not being able to train our pathologists, initiate small research projects, diagnose rare tumours, and recognise new entities, without use of the archival materials from diagnostic procedures. We probably need a universal consent form that patients allow the excess tissues to be used, subject to ethical board approval, to ensure appropriate safeguards. I do not wish to see unfettered potentially damaging research, without limits, far from it. I have though had questions of surprise from parents about that research is not being done on their childrens disease. Clearly the few who do object should be respected, and their tissues not used. This does raise though questions of do we as individuals owe anything to the society we live in, providing it is not intrusive, damaging, or costly to us? |
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Carlos E. Poli de Figueiredo, Professor Adjunto Faculdade de Medicina/HSL/IPB-PUCRS. Av.Ipiranga 6690 Conj 414, Porto Alegre/RS/Brazil,CEP90610.000
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Stored samples may be of great importance for science and health care. Consent should be obtained whenever possible, in order to respect individuals autonomy. Sometimes it may be impossible to obtain consent. The alternative should be to ask for permission to Scientific and Ethics Committees, and research could continue if consent exception is granted. |
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Roger Lee, Banking Oxford
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I didn't see a definition of left over body parts, but I assume it's tissue removed during operations, births etc.. I prefer human tissue to be used for furthering scientific research and testing because I believe that more accurate results can be obtained than using animals. Using human tissue will I presume will also reduce the need for animals. |
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Kevin J. Elks, Trustee of NORM-UK Etondale, Slip Lane, Alkham, Dover, Kent. CT15 7EF, Dr John Warren, Dr Peter Ball, Dr Abrey Sandman, David Smith, John Stevens, James Evinson, Paul Markham, Shelton Kartun, Tony Peters and Iris Fudge SRN
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The use of human tissue or indeed organs is a must for the advancement of medicine and the treatment of disease, but, are we to be treated as children who have little in the way of recognised rights? For far too long patients have been treated as some sort of sub species by the medical proffession, if you attend a doctors surgery there is often a wait of between half an hour to many hours for the appointment. In hospitals consultants seem to have little regard to the time patients wait to see them far beyond their appointment time. There has and still is a sort of arrogance that the patient's time is worthless compared with the doctor or consultant. Amongst the general public there is a wealth of inteligent people that if 'informed' and 'consulted' at every turn would understand the need for using human tissue and body parts that would otherwise be wasted. The inclusion of the patient is vital if the loss of trust is to be halted and even more effort needs to be made to improve that trust to what it should be. I form part of a board of trustees that lead NORM-UK which was set up to help the victims of Male Genital Mutilation and fight for the rights of children to develop normaly. We are deeply concerned that the health service is expanding the facilities to perform this pointless procedure costing the health service dearly, walking roughshod over the basic human rights of the child and exposing the child to risk. The question has to be asked why perfom this pointless surgery on children? It would be perhaps more pertinent to ask where all the tens of thousands of amputated foreskins go? It is fact that this tissue from the penis has special characteristics and can be grown on to considerable surface areas. Is the growing numbers of clinics set up by the National Health Service to amputate the prepuse of children about health care? I think not as there are very few cases where the procedure is clinicaly justified. A more sinister explanation would be that they are there to generate a supply of specific tissue to feed research and possibly generate revenue. The child unfortunately looses a usefull body part without his consent as does the adult to who the child will become. There is a great danger that the public will be used and abused simply to feed large research establishments. Why not acknowlege who's body and who's rights are involved in this equasion and treat the patients with the respect they deserve. Being open and considerate would give the protection and respect to all concerned and like blood donation, giving would be viewed as an act of good community spirit. Kevin J. Elks AIBA |
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Terry J Hamblin, Professor of Immunohaematology Royal Bournemouth Hospital BH7 7DW
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In many laboratories there exist banks of cells, sera and DNA taken from the unwanted surpluses of blood samples that would otherwise have been discarded. Many of these samples date from a time ten or more years ago when consent was implied by the stretching out the arm for the blood to be taken. Apart from wanting to know the result of his test, the patient was no more interested in what happened to the blood than he was in the fate of his stools or urine. At the time the samples were stored no one had the least clue what they might be used for. Many of the patients from whom the samples were taken are long dead. These samples have proved very useful in aiding our understanding of disease. For example, it is now known that chronic lymphocytic leukaemia comes in two forms that can be distinguished by the presence or absence of acquired somatic mutations in their immunoglobulin variable region genes [1]. Patients without mutations have a median survival of 8 years while those with mutations have a median survival of 25 years. Because of this we can now accurately assess prognosis from the first diagnosis of the disease. If such a study were done prospectively, it would take a doctor's professional lifetime to discover the difference. Had the samples been anonymised, it would have been impossible to relate the lesion to the outcome. Had consent been sought at the time of storage, it could only have been in the form, "We want to store some of your blood in the hope that sometime in the future we may find out some useful information about your disease." Such blanket approval (to which I would have no objection) could hardly be called informed consent. There may be questions to be asked about custodianship of such banks, about how such a precious resource might be used, and particularly about its use for research into inherited disease. Certainly such studies should have the approval of ethical committees. But in the particular example I have quoted, which must be representative of many others, I am unable to see who could be possibly harmed by the study, while there are many hundreds of thousands who might benefit from the knowledge accrued. Reference: 1. Unmutated immunoglobulin VH genes are associated with a more aggressive form of chronic lymphocytic leukemia. Hamblin TJ, Davis Z, Gardiner A, Oscier DG, Stevenson FK. Blood 1999 94:1848-54. |
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Peter N Furness, Professor of Renal Pathology Leicester General Hospital, LE5 4PW
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Sir I read with interest the ‘education and debate’ articles on consent and using ‘leftover body material’ by van Diest and Savulescu. 1 But where was the debate? On the core issue, the contributors agreed. Both said patients should be informed that ‘surplus’ resected tissue might be used in research. They should then be able to object if they wish. In these circumstances the absence of an objection represents implied consent. It is a shame the UK Department of Health was not invited to contribute, because their current consultation on the subject 2 indicates a profoundly different view. They say that implied consent is acceptable for using surplus tissue in teaching and quality control, 3 but for almost any form of research explicit consent is expected. 4 The phrase on the consent form informing patients of possible research use, which Savulescu advocates, was present on an early draft of the new 4-page NHS surgical consent forms, but has vanished from the final version. If patients are to control how their tissues are to be used, then use without consent is wrong. But so is prohibition of use, if that is against the patient’s wishes. Those who demand explicit consent assume that consent is easy to obtain; van Diest is right to say it is not. In Leicester we have attempted to obtain explicit consent from all living renal transplant patients for research use of surplus tissue and clinical data. This should be an ideal patient group; the population is stable and patients are never discharged. An initial letter was sent by post. Those who did not reply were traced when they next visited outpatients. After one year we still do not know the opinion of 27% of the patients. But less than 3% of those contacted have objected; so despite a year of effort, a research project where explicit consent is required will still exclude 26% of patients - against their wishes. What sort of an enhancement of patient autonomy is this? If only van Diest, Savulescu and the BMJ would join forces and respond to the current Department of Health consultation. 2 Tell them that if a research project using ‘surplus’ tissue can be shown to incur no risk of damage to the tissue donor, maintains confidentiality and is not in a ‘controversial’ area, then implied consent should be sufficient to allow it to proceed. At present many UK research ethics committees, fearful of post-Alder Hey criticism, are demanding explicit consent, with signatures on consent forms, for almost all research which uses archival tissue. Many research projects have been abandoned as a result. If this anti-social position is set into a new law, medical research in the UK will be irreparably damaged. Yours faithfully Professor Peter Furness Clinical Sciences Laboratories Leicester General Hospital References 1 van Diest P, Savulescu J. Education and debate: No consent should be needed for using leftover body material for scientific purposes. BMJ 2002;325:648-651. 2 Human bodies, human choices; a consultation report. 2002. Department of Health, UK Government. www.doh.gov.uk/tissue/ 3 Good practice in consent implementation guide: Consent to examination or treatment. Tissue. (p23). 2001. Department of Health, UK Government. http://www.doh.gov.uk/consent/implementationguide.pdf 4 Use of Human Organs and Tissue: A Draft Interim Statement for Consultation by the Department of Health. 2002. Department of Health, UK Government. http://www.doh.gov.uk/tissue/interimstatement.htm |
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Ann Tweddel, cardiologist University hospital of Wales CF14 4XN
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Do patients get asked if they want their gangrenous toes/ fingers, appendix, hysterectomy, gallstones, renal stones etc? When they sign consent for surgery is it not implicit that pathology may be carried out where appropriate? So for example do they really want their breasts returned, or the tissue samples - is it not in their interests to allow researchers to have 'redundant tissue' to work with? I personally don't really care what they do, once it has been removed from me and all the better that it might be useful. I certainly would not relish it being returned to me - nor do I feel the need to be asked. |
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Paul J van Diest, Professor of Oncological Pathology VU Iniversity Medical Center
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I would like to add the following comment to the response of dr. Adrian K Charles. In The Netherlands, we regard use of leftover body material for controls, quality assurance and laboratory test development to be a direct extension of the diagnostic process. Permission for this is thereby regarded to be implicit in the permission of the initial diagnostic use. |
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Lizanne Duckworth, Research Co-ordinator (non-clinician) University of Wales College of Medicine, Heath Park, Cardiff, CF14 4XN
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When Professor Furness states that "a research project where explicit consent is required will still exclude 26% of patients - against their wishes" he is extrapolating the data from the responders. Short of canvassing the opinions of the 27% of non-responders to be sure that their views mirror those of the responders, I am not convinced that Professor Furness can state with any certainty that these patients would be excluded "against their wishes". Has Professor Furness considered the possibility that, by failing to return the consent forms, these patients have already exercised the right to 'opt out' of future research? |
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Simon Knowles, Pathologist Somerset
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Adrian Charles and Peter Furness, in slightly different fashions, point out the problems pathologists face in their traditional role as “second-line” clinicians, doing strange and arcane things (like teaching?) behind the scenes. But, surely, a point has been missed here. There is no consent without information. And, with information, perhaps we would not only maintain access to such important material but would also be able to educate the public about what we do; and how complex and very difficult it is. We might even give the original owners of the tissue an opportunity to feel good about the use to which it has been put. And if an owner can't be persuaded then so be it. In this regard at least, “left-over” tissue is not a great deal different to any “left-over” data accrued during patient care. The anger elicited by some of the recent high profile collisions between laboratory medicine and the real world has often been fuelled by perceived or real lack of openness on the part of the professions. I continue to be saddened by our inability to use such incidents in an educationally constructive fashion to move us away from paternalism and towards genuine patient participation and autonomy. Time for diagnostic and research pathologists to get out of the labs and explain what we do...no wonder there are problems with recruitment! Simon Knowles |
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E Parsons, Manager UBHT
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I underwent an appendicectomy in 1997, aged 27, and naively the fact that samples of my redundant appendix might be kept, for whatever reason, never crossed my mind. I am a great believer in the benefits to be gained from robust, systematically performed medical research but on the publication of the research performed by Hilton et al into the accumulation of prion protein in tonsil and appendix tissue samples, I find that tissue from my appendix could well have been used as part of this research (I have no way of knowing for sure as my consent was not sought and the research is anonymised). Now I find myself, somewhat irrationally, wondering 'Am I the One?'in whom an accumulation of prion protein was found? |
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Elliott Foucar, surgical pathologist University of New Mexico School of Medicine, Albuquerque, NM 87106
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EDITOR-- Experience tells us that most patients would like medical care to improve, and furthermore most patients willingly facilitate this improvement, often by assuming major risks. Savulescu’s recent discussion deals with a different issue – accommodating the preferences of a small group of patients who want the benefits of advanced medical care, but apparently do not want to make even the simplest contribution to the further development of that care.1 Savulescu mentions the moral duty of “easy rescue”, which potentially provides a basis for deciding whether refusal of consent to donate waste tissue is morally acceptable behavior. However, he then concludes that “morality should not be enforced”. This conclusion left me wondering if Savulescu has difficulty coming to a moral judgment only when faced with patients who feel strongly that they should not participate in the “easy rescue”, or does his moral pacifism apply to other areas as well? Savulescu suggests that “education” may help with the problem of refusals, but because we do not know that refusal is a result of a lack of any specific body of knowledge, exactly what would be the form or the effect of this education? It is possible that the patients who answer “no” to donating their tissue are not the easiest group to perform any other type of study on, and the study by Stegmayer and Aspund does not address the question of why such people say “no”.2 Is there believable evidence of a betrayal of trust that has resulted in objective patient harm from studies done on waste tissue, meaning that those people offering a “no” answer are simply the best informed patients? Is the problem to be addressed one of innumeracy, in which case modifying behavior would require a substantial mathematical education to transform these people into willing participants. Do these patients know little or nothing about science, and if so, how should they be educated? What if this refusal is usually a manifestation of a psychiatric disorder. Obviously society’s response should vary substantially depending upon whether the “no” vote results from modifiable ignorance, refractory ignorance, recondite identification of dangers, or simply neurosis. At present, government has largely formulated the problem as one of how to sort willing participants from non-participants, with immoral behavior defined not as refusal to donate, but as research use without formal patient consent. The result is a large, intrusive, legalistic and expensive bureaucracy grafted onto clinical research. Elliott Foucar, surgical pathologist
1. van Diest PJ, Savulescu J. No consent should be needed for using leftover body material for scientific purposes- for- against. BMJ 2002;325:648-651 (21 September) 2. Stegmayr B, Asplund K. Informed consent for genetic research on blood stored for more than a decade: a population based study. BMJ 2002;325:634- 635 (21 September.) |
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Barry D Mahon, Consultant Cardiothoracic Surgeon Wellington Hospital New Zealand 6003
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Working in New Zealand one soon realises that there are significant cultural issues involved with the use of tissue for teaching and research. A number of my patients do not consent to tissue obtained during surgery being kept for future diagnostic purpose, teaching or research. Instead they request that the material be returned to them for burial. They have explained this to me as is in keeping with the traditional Maori value of "Wairuatanga" (Spirituality). Secondly, for to argue that, "Alder Hey apart, this practice has not caused protest" is incorrect. When Green Lane Hospital in Auckland publicised the fact that a significant number of paediatric hearts and other organs had been retained after postmortum for teaching and research purposes, howls of protests were heard and elective paediatric cardiac surgery was temporarily halted. |
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Taliesin J Golesworthy, Technical Director, EDT Ltd Theocsbury House, 18 Barton St, Tewkesbury, GLOS GL20 5PP
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Given how few people think ANYTHING through, it is no surprise that most are unprepared for difficult decisions relating to their, and other family members', dead physical remains post operation or death. Once irrational grief has given way to the desire for vengeance doctors beware!. Somewhat later comes that endemic sickness in Homo Erectus called greed. Any excuse to blame someone else for the misfortune and to gain financially by the same is taken. Fairly obviously, the real tragedy is that access to human tissues, particularly infant tissue, will become increasingly difficult so teh knowledge and skills base of the paediatricians MUST decline. I really believe that doctors have no option but to retain body tissues without seeking consent. Getting the herd to think this one through quietly and well before the event is probably not possible. I speak as one whose left eye went into the hospital incinerator some years ago and whose marfanoid remains, I hope, will provide medical students in the future the chance to work with some material that will contribute to their knowledge base as physicians. Tal Golesworthy C Eng M InstE MRSC |
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Daniela Zauli, Associate Professor of Allergy and Clinical Immunology University of Bologna-Policlinico S. Orsola-Via Massarenti 9-40138 Bologna, Italy, Elena Manfredini, Sara Zucchini, and Alberto Grassi
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I really don't see why the patient's consent should be obtained to use her/his body material, which will eventually be discarded, for research and teaching purposes. In our laboratory we have now stored nearly 88,000 sera, which were originally sent for autoantibody testing. Whenever I have to show my medical students or fellows-in-training how to perform and interpret an immunofluorescence test to detect anti neutrophil cytoplasmic antibodies (ANCA), I pick 2 positive and 2 negative sera from the freezer and simply do the test with them. The same considerations applies to research projects, i.e I want to try to identify the target antigen(s) of liver disease-associated ANCA. In most cases I would never be able to track the patients to obtain their consent, because sera are sent to our laboratory from many clinics and departments of our and other hospitals all over Italy. |
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Martin J Duckworth, Retired Professional Engineer
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In an ideal world, such as might be populated by the educated and intelligent readers of the BMJ, informed consent to permit redundant tissue to be used for research or teaching, etc, would be simple to obtain from anyone whose religion or culture. However, the UK is far from such a well educated utopia, and from events such as Alder Hey it appears that many of the population attach what appears to me to be an irrational and medieaval, if not pagan, importance to the burying or cremating complete bodies. This is despite claiming to be Christian, a religion where it is the soul rather than the body which matters (for the record, I'm an agnostic). So I don't think the 'informed consent' approach will ever work with this element of our population, for whom the heart will always rule the head. I really don't care what has happened to my own redundant tissue, but I'd be delighted if it has been put to good use. I'm just glad that I don't have to store it until I peg out, as I assume the 'complete body' brigade intend to! |
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Peter N. Furness, Professor of Renal Pathology Leicester General Hospital, LE5 4PW
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Ms Duckworth challenges my argument that of the 27% whose wishes we have not sought, most are perfectly happy for 'surplus' tissue to be used in research. This is not an assumption. As we gradually do manage to trace patients when they come to their (infrequent) outpatient visits, of those who did not reply to the questionnaire so far 32 out of 33 have given consent when asked face to face, avoiding the bother of having to post a letter. That's just 3% expressing an objection, approximately the same rate as in the postal responses. So a failure to reply is not a way of voicing objection. Given the argument of 'easy rescue' proposed on the supposedly 'against' side of the debate, this surely means that those who can't be bothered to reply can be assumed to have no objection? You can respect the 97% or the 3%, but not both; which is it to be? |
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vijay Rajput, Assistant Professor of Medicine, Co-director Internal Medicine Residency Robert Wood Johnson Medical School, Camden, New Jersey, USA 08103
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Ethicists, patient advocates, and legal experts have struggled for years with balancing societal interests and needs in improving public health through advance in medical knowledge and research with the individual interest osf the patient, either in avoiding potential harm or surprises associated with clinical research studies.The gap between scientific and societal perspectives on body parts whether discarded or taken as donation has been exacerbated by the often defensive reaction from scientists. In the famous example in Moore v Regents of the University of California,(1) a patient sued his physician and a biotechnology company for using his biopsied splenic tissue without his consent and transforming it into a parental commercial cell line; the court sided with the interests of the defendents on arguments for the plaintiff does not have a property rights to the cell line, but the court agreed that the researcher failed to adequately disclose the known use of tissue in the consent process. However, federal government in USA has begun to integrate cultural values and increased patient rights to control the use of their body materials. The research use of archived or discarded human tissue samples in the era of genetic medicine is further complicated by the fact that genetic information has ramifications that extend beyond the traditional patient-physican and patient-researcher relationship.It also includes duality related to family members (potential insurance discrimination),and racial and ethnic affiliations which may lead to prejudice and bias.The American society of Human Genetics and American College of Medical Genetics recommend that individuals be asked whether or not they wish to allow its anonymous use before tissue is taken from them. Ignoring cultural values and societal concerns is not in the best interests of science and society.The prolifeation of disputes suggest that social conceptions of the body serve important purposes for individuals and society.(2)I am sure nobody in the world wants the surprise that Mr. John Moore got in Californa in 1980. 1.Moore v the regents of the University of California et al,793 P2d 479(Cal 1990) 2.Anderson L,Nelkin D. Whose body is it anyway? Dispute over body tissue in biotechnology age.Lancet 1998;351:53-57 |
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Peter Horby, Consultant Epidemiologist PHLS Communicable Disease Surveillance Centre, 61 Colindale Avenue, London NW9 5EQ, O Noel Gill
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Editor, The debate over the consent requirements for using leftover body material [1,2] is well timed given the current government consultation on the removal, retention and use of human organs [3]. The tension between pursuing public benefits and the wish to promote patient autonomy and protect patient rights is a real one that cannot be reasoned away. Your ‘For and against’ contributors demonstrate that the precedence given to either value is very much a personal perspective. Moderate people will recognise that public benefit or personal autonomy can never be absolute criteria since the concrete application of either value will result in folly. We believe the ‘For and against’ authors are moderate people; they recognise the need for balance and, it appears, essentially agree with one another. There are very real examples of harm resulting from un-consented use of tissue, but there are also very real examples of un-consented use of tissue resulting in great benefits without any evidence of harm. The use of irreversibly anonymised specimens, that would otherwise be discarded, for the national surveillance of HIV and hepatitis infections has been ongoing in the UK since 1990; over seven million samples have been tested, six annual reports published and much has been learnt about the changing distribution of these viruses in the UK population [4]. As coordinators of these studies, we are not aware of any adverse impact on individual patients or on the relationship between patient and doctor. The key point is in the opening line of the ‘against’ piece [2]. What is important is what we ‘do to patients’. Using leftover tissue without explicit consent may or may not ‘do’ something to an individual. In theory any tissue that contains DNA, including discarded tissues such as hair and nails, could be used for purposes that might seriously harm the patient. But it is eminently possible to protect patients without blanket requirements for explicit consent. The use of leftover tissue without explicit consent is not, as suggested by Savulescu [2], an attempt to enforce morality. Rather, it is a pragmatic solution developed by scientists providing necessary public benefits. Compromises between personal liberty and public good abound in our society and there is no reason that health should be an exception. Yours truly, Dr Peter Horby Consultant Epidemiologist Dr O. Noel Gill Consultant Epidemiologist PHLS Programme for Unlinked Anonymous HIV Prevalence Monitoring HIV/STI Division PHLS Communicable Disease Surveillance Centre 61 Colindale Avenue, London NW9 5EQ References 1 van Diest PJ. No consent should be needed for using leftover body material for scientific purposes. For. BMJ 2002 Sep 21;325(7365):648-51 2 Savulescu J. No consent should be needed for using leftover body material for scientific purposes. Against. BMJ 2002 Sep 21;325(7365):648-51 3 Human Bodies, Human Choices. The Law on Human Organs and Tissue in England and Wales. A consultation report. Department of Health and Welsh Assembly Government, July 2002. Available on-line at: http://www.doh.gov.uk/tissue/choices.pdf 4 Prevalence of HIV and hepatitis infections in the United Kingdom 2000. Annual report of the Unlinked Anonymous Prevalence Monitoring Programme. Report for the Unlinked Anonymous Surveys Steering Group, Department of Health, December 2001. Available on-line at: http://www.doh.gov.uk/hivhepatitis/hivhepatitis2000.pdf |
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(Dr) Trevor LP Watts, Senior Lecturer and consultant in periodontology Guy's, King's and St Thomas' Dental Institute, Guy's Campus, London Bridge, SE1 9RT
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The debate on retained tissues for research and teaching is at the wrong level. It is not simply a matter of whether the patient's property (body specimens) is kept by the clinician or pathologist. In every clinical encounter, there is a learning involvement of the clinician. Existing beliefs may be either reinforced or challenged. This learning accumulates for that clinician and others, providing more evidence for future management of patients. To single out tissue retention as requiring patient consent is without any but the crudest of materialistic reasons. Knowledge is one aim of the clinical encounter, and it is the real justification for retention of case notes, test results and specimens alike. Without such knowledge gained from previous generations of clinicians and patients, there would be no basis for treating our present patients. Why should some patients in this particular generation opt out of what has been so useful to them? Why the apparent dog-in-the-manger attitude? Are these people motivated by greed? I hope not. Are they simply ignorant or confused? Perhaps. Where do they think the expertise has come from to treat their own problems? Should they be allowed to benefit from knowledge acquired from previous patients without contributing in the same way to the welfare of future patients? Competing interests:
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