Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
Pathology practice and consent for all.
- Adrian K Charles (3 September 2004)
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Ethics; Power and Control
- susanne mccabe (3 September 2004)
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Context matters more when it is the BMJ itself
- Andrew J Ashworth (6 September 2004)
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The BMJ's policy on images
- Trish Groves (6 September 2004)
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What about incompetent patients?
- Ainsley J. Newson (7 September 2004)
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Confidentiality & case material: further issues
- Heather Draper, Wendy Rogers (8 September 2004)
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Ethics, Power and Control
- Fiona M Woollard (9 September 2004)
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Confidentiality and carers
- Ola Junaid (14 September 2004)
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Re: Ethics, Power and Control
- susanne mccabe (14 September 2004)
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Ethics, Power and Control
- Fiona M Woollard (17 September 2004)
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Informed consent
- Diwa Nath Das (16 October 2004)
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Adrian K Charles, Pathologist Perth , Australia
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I am a firm believer in obtaining consent for readily identifiable cases. Singer starts by suggesting that there is no need for consent if the patient cannot be identified, but realistically there is almost always a way, if one is given a few clues, such as age, sex, diagnosis, follow up data and hospital of identifying such a patient, particularly if you are the patient or know them well. Singer says "For this reason, you must obtain express consent from patients before publishing personal information about them as individuals in media to which the public has access, ... whether or not you believe the patient can be identified. Express consent must therefore be sought to the publication of, for example, case-histories " is difficult or impossible to realise in the current situation in pathology. Personal information is not defined but I would imagine a diagnosis with age, sex, and follow up is such. Only exceptional published case series rather than the normal will follow this ideal. Many pathology advances have been made and continue to be made by the publication of (often large) case series. Pathologists have no direct connection with the patients, usually deal with many clinicians providing the cases, and tend to present a collection of cases from a number of years. The normal review will mention the patients age, sex, how long follow up and possibly recurrence, with perhaps a picture of the histology of the tumour. These could be "identified" if the case was relatively unusual by the patient or next of kin. (oh... look case 56 that must be me thats my age, and I went to that hospital and it recurred 3 months later and my brother has the same disease case 42!). Teaching pathology is also on the web using intersting cases. By the time the pathologist has made the diagnosis on the material, the patient is no longer in the hospital, and it may not be even ethical to approach the patient for consent at a later date. A quick review of a recent Pathology journal shows many such review cases without such consent mentioned. During the SARS outbreak the quick publication was beneficial in identifying the cause and spread, yet it is not clear that these guidelines were followed. Furthermore in large reviews, the same arguments of including all cases for epidemiological based information makes the consent issue a real problem. The ethical statement here is an ideal, but unrealistic in todays health service without enormous funding to provide these facilities for obtaining consent. The statement made above cannot stand without considerable qualification. A balance must be more firmly stated about the potential benefits and wishes of most of the patients who are happy that their disease is being researched. A way of getting consent for such research (non specified potential research) may need to be on the surgery consent forms. The whole approach is that somehow by not being able to get this we as pathologists are not performing ethically. I contend that it is at least as unethical to not publish insights into these diseases. Have patient disease groups been approached to help with these guidelines to both protect to a reasonable degree the dignity and rights of privacy, and yet also fulfil patient demands for research into their disease? I am afraid that this statement will suggest that retrospective research cannot be undertaken without consent, contacting patients by the pathologist or those no longer being followed up is dubious. Furthermore the ethically pure approach is not to publish it without consent or with no information such as age, sex and follow up details that are so important scientifically. Competing interests: None declared |
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susanne mccabe, retired cf 24 3pf
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A. Charles highlights how commonplace it is that many practitioners are not complying with guidelines which oblige them to inform people of the right to state their wishes regarding use, or not, of their information, on medical files. Many are still using loopholes by simply sticking up notices in surgeries which they know will go unnoticed, or that many users will not be able to deal with ,or be embarrassed to make their wishes known. IT IS SHABBY AND UNETHICAL especially in those practices where health workers are involved with research, are publishing books using private information 'drawn from their experience in surgeries' (ie other peoples experiences). Researchers such as A. Charles who are keen to develop the partnership approach which is demanded by society now, could be more proactive in encouraging practitioners to comply with guidelines so that they can get on with their research. The attitude of the public is not the sticking point here, most are only too willing to participate - if treated openly, with respect and without having others play power games with important aspects of their lives - it is unethical for those in the advantaged position, by dint of the work they do, to exploit the disadvantaged who largely have no choice but to divulge personal information. Part of the work of a true ethicist should be to inform and empower the disempowered. There is the nub of the problem with the present BMJ Ethics Committee. It is not clear how people have been appointed (rather than elected). None excepting Peter Singer perhaps are unattached to the medical profession in a way that they can attend to the ethical demands of all sections of society, their own self interests compromise this posibility. Incredibly in the present climate there are no Lay representatives. This does not engender trust that such a committee can be responsive to the cultural expectations of present society. The article written by a member of the ethics committee last week seemed as much a demonstration of the desire for increased control than than a genuine attempt to reflect the wishes of all sections of society. Ethical problems are complex and to some extent bound up with issues of power and the values of society. The BMJ needs a differently constituted Ethics committee. The current Chair of BMJ Ethics committee, Iona Heath Co-Principal Caversham Health Centre, (also Chair GPs Ethics committee) stated (in BMJ 17 Feb. 2001 'A Warning to the GMC) 'There is no question that lay people must be involved in the regulation of the medical profession.....But how should these people be selected.....'She has anxieties but admits of the need for lay representation - It equally applies to the BMJ Ethics Committee and the GP committee which she chairs. I am obviously qoting parts I find relevant to my argument - (the whole article is available on-line) but elsewhere in the piece Iona Heath states 'the GMC seems likely to becaome smaller with a larger proportion of lay members, AND THE POTENTIAL FOR POLITICAL PLACEMENT AND INFLUENCE WILL BE PROPORTIONATELY GREATER'. The message could be taken on board equally to inform the way the BMJ Ethics committee is run. Competing interests: Many years of work in the field of medical ethics |
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Andrew J Ashworth, GP Principal Davidson's Mains Medical Centre, 5 Quality St, Edinburgh, EH4 5BP
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The photograph of "An autopsy in progress" on page 527 of the paper version in which this paper appears does not seem to comply with BMJ policy laid out on page 567. Will the BMJ both appologise and set up a system to ensure that all parts of the journal comply with policy? Competing interests: None declared |
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Trish Groves, senior assistant editor BMJ Editorial, BMA House, Tavistock Square, London WC1H 9JR
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Many thanks to Dr Ashworth for raising this point about our policy on images, which we're happy to clarify. Firstly, though, we apologise for any offence caused by the publication of this photograph. We obtained the photograph from a picture agency and did not, therefore, seek any personal consent before publication. This fits with the BMJ's policy on images, and with the recommendations made by the BMJ's ethics committee: "Publication of information including photographs obtained from the public domain, including wire services and news archives—This information was obtained from the journalist-subject relationship. The information is in the public domain and it is ethical to republish it in the BMJ. ...Editors may want to exercise discretion in publishing such information, but this is a matter of etiquette, not ethics." 1 We will soon be providing updated and expanded advice to contributors at bmj.com/advice on using images. This guidance will give details to authors on the technicalities and ethics of choosing, seeking consent and copyright clearance for, and sending pictures and other illustrations for publication. An accompanying editorial will explain the BMJ's overall policy on images, spelling out what we expect from authors and editors. 1 Singer, P. Consent to the publication of patient information. BMJ 2004;329:566-8 (4 September). Competing interests: None declared |
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Ainsley J. Newson, Post Doctoral Associate in Clinical Ethics and Genetics Medical Ethics Unit, Imperial College London & London IDEAS Genetics Knowledge Park; London W6 8RP
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Whilst the BMJ Ethics Committee’s revised policy on consent to the publication of patient information[1] is laudable, an important matter remains overlooked: publishing cases involving incompetent patients. Much can be learned from these cases; be it highlighting clinical difficulties or drawing attention to neglected moral issues. But, the Guidelines as written may make it impossible to publish them. Say I wished to publish a case involving a traceable adult with learning disability who had requested genetic counselling. Turning to the Guidelines[1], I would be required to obtain her consent prior to publication. However, obtaining written informed consent from adults with questionable competence could be difficult or exploitative, as they may lack the capacity to understand the implications of consent to publication. Further, the exceptions listed under Point 3 do not apply. Merely anonymising her information would be ethically problematic, as could drafting a fictional case ‘inspired’ by the clinical encounter. And, until the Mental Capacity Bill becomes law, no-one can provide consent on her behalf. How should we balance the value gained from publishing these cases with respecting the interests of the people involved? Rogers and Draper have already addressed this issue in the context of medical ethics research and teaching[2]. They argue that using cases with practical obstacles to obtaining consent can often be justified, inter alia, by an appeal to public interest arguments, such as the public’s right to know what clinical and ethical dilemmas doctors face. Whilst more discussion is required, the BMJ Ethics Committee also needs to develop practical recommendations for the use of case studies where the subject cannot provide full informed consent. 1. Singer PA. Consent to the publication of patient information. BMJ 2004;329: 566-568. 2. Rogers WA, Draper H. Confidentiality and the ethics of medical ethics. Journal of Medical Ethics 2003;29: 220-224. Competing interests: None declared |
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Heather Draper, Senior Lecturer Biomedical Ethics University of Birmingham, B15 2TT, Wendy Rogers
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We welcome the views of the BMJ ethics committee [1]. In an article for the BMJ’s sister journal the Journal of Medical Ethics we drew attention to some of the obstacles to gaining consent for publication of case material in ethics [2]. Many of these were highlighted in case material published by the JME over the previous 20 years. We also reviewed the policy of several general medical and specialist ethics journals and found that many, including the JME, gave no instructions on confidentiality. Given the amount of case material that is used in medical ethics, this is a significant problem that editors may be addressing in any one of several ways: editors recognise the problems highlighted both in our article and in this one and exercise discretion on what to publish; editors do not think that issues of confidentiality are raised when (apparently) anonymised case studies are used; editors have not given sufficient thought to the matter and have no policy; or, editors did not recognise the issue. We were pleased to read that the BMJ both recognises the problem and the need for editorial discretion in difficult cases. We would, however, like to draw attention to two issues that are not addressed in the article by Singer. First, it may not be possible to anonymise a case when the relevant ethical issues tend to make it unique. To cover this possibility, it may be worth revising BMJ policy point 3 (ii) to add the public interest in debating important ethical issues to the existing two criteria of clinical lesson or public health. Second, as Newson has noted, the article makes no reference to the problems of gaining consent for those who are unable to consent for themselves[3]. In our paper, we pointed out that publication is rarely in the patient’s own interest (though involving an ethicist in discussions about the patient might be), so that it is difficult to see the grounds on which consent could be given – except perhaps that it is not against the interests of the patient. Finally, on the question of reporting mistakes, here the issue might not just be one of the patient’s consent. What of others involved? What if the mistake was not made by the person hoping to publish the article but by a colleague or associate? In such cases, should the author gain the consent of other relevant parties also be gained? If not, why not? And if not, could the principles for not gaining consent be applied to other cases – e.g. those where the patient does not wish to consent? Heather Draper, Senior lecturer in Biomedical Ethics, University of Birmingham Wendy Rogers, Associate Professor Medical Ethics and Health Law, Flinders University. 1. Singer PA. Consent to the publication of patient information. BMJ 2004;329: 566-568. 2. Rogers WA, Draper H. Confidentiality and the ethics of medical ethics. Journal of Medical Ethics 2003;29: 220-224. 3. Newson AJ. What about incompetent patients? Rapid responses, BMJ http://bmj.bmjjournals.com/cgi/eletters/329/7465/566 Competing interests: None declared |
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Fiona M Woollard, Personal Assistant YO24 1EP
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"For this reason, you must obtain express consent from patients before publishing personal information about them as individuals in media to which the public has access, for example in journals or text books, whether or not you believe the patient can be identified. Express consent must therefore be sought to the publication of, for example, case-histories about, or photographs of, patients". However, the GMC does admit of exceptions in the case of patients who have died" Approximately three years ago, I find that my son's rare heart malformations were written up in a cardiology surgery journal. As I come from a medical family, I had no regrets that it had been done. However, it was immediately identifiable to me because he had an absent right subclavian artery, an interrupted aortic arch, VSD, PDA, ASD. I knew it was him but had I been given consent for its release, I would have readily agreed. It was right, however that it was written in the literature because it was rare but it was the lack of consent that bothered me. I do disagree with the exceptions in cases where patients have died. My son has since died from sub-aortic stenosis, endocarditis, stroke and congestive heart failure. I would hope that the sensitive nature of his case - that I was informed of any publication by any of the hospitals involved. Whilst I would probably agree to publication, I would also like to know what was written before suddenly finding it on the Internet in articles such as this. Over the years, I have found many untruths about me in notes and the condition as a whole, I would like the facts spelt out properly - the words sterotyping seem to come to mind! We both have the same rare genetic deletion and syndrome and it would not surprise me at all that we are written up at some stage in the future. However, photographs can also cause distress for medical families. We are easily identifiable but I would like to be asked and I would in turn fully support the doctor who in turn would write "a true and honest report" rather than what they seemed to think at the time. Fiona Woollard Competing interests: None declared |
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Ola Junaid, consultant old age psychiatrist St Francis Unit
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Perhaps we should widen the debate. Who is responsible for protecting the confidentiality of patient information when carers or relatives write about a personal experience. Surely patients deserve the same protection whether its a doctor or a parent writing the article. I suggest that the BMJ ethics committee considers the much wider topic of protecting patient identification irrespective of the authors qualifications. Ola Junaid Competing interests: None declared |
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susanne mccabe, retired cf24 3pf
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Fiona Woollard points to the GMC guidance on publication after a child's death. The BMA or GP Ethics Committee is not in a position to override it. As some doctors are obviously still not updating themselves they should surely be obliged to prove knowledge of the most recent guidance, on revalidation. Information about GMC Guidance is is easy to access, for public with access to the web,and practioners alike. Overall doctors should not abuse their postion;should provide those who consult tem with nformation; those in management positions, such as some members of the ethics committee, additionally have an obligation to ensure that fellow practitioners follow GMC guidance. (Paraphrased from GMC website). Specific to the BMJ's Ethic's committee's the proposal to have the right to breach confidence by publishing fifteen years after a person's death; The GMC Guidance; 'Confidentiality; Protecting and Provising Information clearly states that a doctor has an obligation to keep information confidential after a person dies'. There are a few exceptions and some will find loopholes in this rather than comply, but crucially a doctor has an obligation to respect persons' wishes.Who more than the parents have the right to decide after the death of a child - to override them is dehumanising. The distresss caused to Fioan Wollard could easily have been avoided by treating her with proper respect and by conforming to the GMC guidelines. The decision to publish a persons' medical information because he lived abroad, ie not in the UK (editorial on work of the BMJ cttee), was flawed on several counts; it is deceitful, based on the old mind set of what 'they' don't know, won't hurt 'them'; it ws ok to publish somebody from another country but not the UK.The 'get out' used to be aplied to UK citizens and upheld by the GMC a decade ago; are 'others' subject to lesser ethical protections? Ethical issues, including 'consent' are likey to become more complex with increasing submissions from 'patients' and 'carers' to the BMJ. The members of the BMJ Ethics committee do not hold regulatory powers and are already in some sensitive areas, overstepping the mark by proposng to erode guidelines set up by the GMC after many years of work on updating the culture of medicine. Competing interests: None declared |
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Fiona M Woollard, Personal Assistant YO24 1EP
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Patient’s carers often write in support groups, articles, books about their child’s condition particularly if it is rare. They look for others for support, ideas and knowledge. It is through this they advocate, educate and this includes medical professionals. I know of a number of children that have been diagnosed as a result of one of my articles. It is the parents of these complex cases that know about their child’s condition because it is they that have to deal with the numerous issues involved. As it was reported to me on many occasion – I know far more about my child than anybody else. In my loft there are four A4 files of notes from a number of hospitals. What hurts me most is the three/four pages of retrospective notes that appear in his notes from one hospital that bear no relation to the 8 years of his life written some 3 weeks after his death neither is there any comment on his deteriorating heart condition (which should have been the over-riding cause of concern) which was the cause of death. During the last six months of my son's life, we also had a right to be told how seriously ill my child was, the results of echocardiograms, ECGs, X-rays, blood results. It is odd how these were withheld until after my son's Inquest. The comments are hurtful, unwarranted and a complete non-sense and yet I cannot get them removed nor have ever had an apology from the hospital/ doctors concerned. This is not ethical, moral or correct yet it has been done. It was deceitful and has caused considerable distress at a time when I was grieving. It has led to a considerable lack of trust of doctors whom I thought I had trusted. The GMC/DOH/doctors as a whole need to address the issue of Munchausen syndrome by proxy, exaggeration, fabrication, somatization in people with known diagnosis and prognosis. The guidance on Factitious Illness does not protect the genuine ill child/baby with a complex condition whose disease may complicate or not go according to plan or a lack of understanding by a doctor/paediatrician who is fixated by Munchausen's. It offers them NO protection whatsoever and the diagnose should not be an excuse to avoid doctors own competence trying to avoid medical negligence and instead focusing on the mother's genuine anxieties about her child's heath particularly where their child's problems are wholly consistent with their child's diagnosis. It is completely wrong and unethical. Competing interests: None declared |
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Diwa Nath Das, SAS L&I DGH,PA34 4HH
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Obtaining informed consent from patient regarding case details or image or photograph is a very difficult and vague issue.Frankly I don't know what else to tell patient except that his photograph or case details is being sent to a scientific journal for publication and if published this may help other people to learn from my experience in helping other similar patients.I can't tell patient whether his details will get published because I don't know that.Patients mostly are unaware of the nature and type of medical journal.They can't tell difference between BMJ or JAMA or New England Medical Journal.Most of the time they haven't even heared the name of the Journal,its place of publication and its circulation.They don't know how much impact will it have once his details are published.I don't know about any financial implication for publication.I can't tell whether publication of details will distress the patient.In fact I found that patients like the idea that thier case gets noticed.There is not enough information regarding patient's informed consent and I believe other also face similar situation. For us practically it becomes a ritual where patient signs on the dotted line because we ask trhem to do so! Competing interests: None declared |
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