The Introduction[1] to the very welcome Olivieri Symposium focuses on a “timeline of the most salient events”. Unfortunately, Viens and Savulescu left out several events of fundamental ethical concern and accepted some “facts” that are highly questionable. Most surprisingly, they have fallen into a common error: emphasising the scientific argument, when that is not their expertise, and bypassing the funda...
The Introduction[1] to the very welcome Olivieri Symposium focuses on a “timeline of the most salient events”. Unfortunately, Viens and Savulescu left out several events of fundamental ethical concern and accepted some “facts” that are highly questionable. Most surprisingly, they have fallen into a common error: emphasising the scientific argument, when that is not their expertise, and bypassing the fundamental ethical issue of the obligation to put concern for safety first. Thus their account both misleads in historical fact and misses the ethical point.
A critical omission:
The claimed objectivity of the Timeline is based on citation of three reports: Naimark[2], CAUT[3] and CPSO[4]. Inexplicably, the central conclusion of the Naimark report is not cited, while those of the later CAUT and CPSO reports are. Although all three reports address ethics, Naimark’s conclusions are strongly refuted by the CAUT and CPSO reports. Dr. Arnold Naimark was contracted by HSC to review the matter. Based on allegations by Dr. Hugh O’Brodovich, Paediatrician-in-Chief of the Hospital for Sick Children (HSC), his colleague Dr. Gideon Koren and Apotex Incorporated Vice-President Michael Spino[3], the Naimark report[2] alleged that Dr. Nancy Olivieri had failed to comply with ethical obligations in connection with her identification of unexpected risks of Apotex’s drug, deferiprone (L1). Throughout his investigation, Naimark’s appointment was the subject of controversy. As a result, a few weeks before the release of his report in December 1998, Dr. Naimark was joined by two of Canada’s leading ethicists, Drs. Frederick Lowy and Bartha Knoppers, who signed his report, upholding the allegations.
This central finding of the Naimark report was the basis of HSC’s strong actions against Dr. Olivieri during the next three years. It fueled the controversy from then onward, and the post-1998 story would be incomprehensible to a reader of JME who was unaware of it. Yet Drs. Viens and Savulescu failed to mention it.
The conclusions of the Naimark report were later found to be erroneous by the Canadian Association of University Teachers[3] and the College of Physicians and Surgeons of Ontario[4]. The University of Toronto followed suit and all three fully exonerated Dr. Olivieri. In particular, the CPSO report found her ethical and clinical conduct “exemplary.” By omitting reference to the Naimark report’s now discredited findings, the Viens and Savulescu Timeline could mislead the reader into believing that this report can still reasonably be relied on.
Questionable “facts”: The CAUT report[3] determined that Dr. Koren had given false testimony against Dr. Olivieri to Dr. Naimark, and that he had worked closely with Drs. O’Brodovich and Spino in efforts to discredit her. The Naimark report[2] expressly relied on Dr. Koren’s testimony[3]. A year after the Naimark report was published, Dr. Koren was disciplined, publicly, by all three of the University of Toronto, HSC and CPSO[4] for persistent, extensive dishonesty, including “lying” in his attempts to discredit Dr. Olivieri. The most misleading passage from the Naimark report, cited uncritically in the Timeline, is the reference to two ‘letters’ provided by Dr. Koren to Dr. Naimark for his 1998 inquiry, bearing the ‘dates’ of “December 18, 1996” and “February 8, 1997”[3]. These two ‘letters’ have been discussed in three separate wider-ranging inquiries, each casting serious doubt on their authenticity and citing evidence that they were not written on the 1996 and 1997 ‘dates’ they bear, but instead in the fall of 1998. Dr. Olivieri never received either letter, and learned of them only after the Naimark report was published. Dr. Koren himself later acknowledged that he had destroyed evidence relevant to determining the actual dates on which the ‘letters’ were typed.
Still citing the Naimark report, the Timeline goes on to state, “Koren later publishes findings that L1 was effective and safe on a re-analysis of data.” In fact, as Dr. Koren subsequently acknowledged, these 1997 publications had been drafted by Apotex staff and he had agreed to be listed as senior author[3]. This was a year in which Dr. Koren held a $250,000 research grant from Apotex, but he did not disclose in these publications that he was funded by Apotex, nor did he disclose to the university the source or purpose of the grant[3].
Missing salient events: The Timeline does not mention that Dr. Koren was disciplined for professional misconduct by the CPSO (as well as by the hospital and the university)[5]. More surprisingly, it also omits that he was later disciplined again by the University for scientific misconduct in connection with a 1999 journal article favorable to deferiprone. His article did not disclose his Apotex financial support, did not cite earlier published findings of risks of the drug, did not report adverse data to which he had access, and did not acknowledge the work of Dr. Olivieri and the other scientists who had actually generated the data he used.
The Timeline does not mention that Apotex sent a whole series of legal warnings to Dr. Olivieri in efforts to deter her from disclosing risks to patients, other physicians and regulatory agencies. Apotex copied a number of these warning letters to the university, yet the university took no effective action to support Dr. Olivieri. The Timeline also omits that, simultaneously, the university and Apotex were in negotiations for a multimillion-dollar donation to enable the university to build a new biomedical science complex[3]. During these negotiations, the President Robert Prichard of the university wrote to the Prime Minister of Canada lobbying for patent regulations that would benefit Apotex.
Missing the ethical issue: The Introduction uses space for preliminary regulatory details and the biology of thalassemia and iron chelation, although the authors are not experts in either scientific field. Yet the fundamental ethical issue is missing. Dr. Olivieri identified a risk of lack of sustained efficacy and therefore possible harm, and insisted on informed patient consent and valid clinical trials to address the potential harms. Apotex prematurely terminated the trials and repeatedly tried to silence her with legal warnings. The fundamental ethical issue is the failure of Dr. Olivieri’s hospital and university to support her ethically correct approach to clinical science.
References
(1) Viens AM, Savulescu J. Introduction to The Olivieri symposium. J Med Ethics 2004;30(1):1-7.
(2) Naimark A, Knoppers B, Lowy F. Clinical trials of L1 (deferiprone) at The Hospital for Sick Children: a review of the facts and circumstances. Toronto: Hospital for Sick Children; 1998.
(3) Thompson J, Baird P, Downie J. Report of the Committee of Inquiry on the case involving Dr. Nancy Olivieri, the Hospital for Sick Children, the University of Toronto, and Apotex, Inc. Toronto: James Lorimer and Company Ltd; 2001.
(4) The College of Physicians and Surgeons of Ontario Complaints Committee: Decision and Reasons. Claimant: Dr. Laurence Becker; respondent: Dr. Nancy Olivieir. Dec 19: No 44410. 2001.
(5) Downie J, Baird P, Thompson J. Industry and the academy: conflicts of interest in contemporary health research. Health Law J 2002;10:103-22.
The paper by J Harris is well thought out and certainly
discusses one of the most difficult issues a doctor may
face; this includes not only breaking bad news but also
helping his/her patients with any ensuing decisions
regarding 'end of life decisions'.
As a paediatrician, one faces the additional difficulty
that one's patient is often unable to voice his/her wishes
or feelings. When faced with hav...
The paper by J Harris is well thought out and certainly
discusses one of the most difficult issues a doctor may
face; this includes not only breaking bad news but also
helping his/her patients with any ensuing decisions
regarding 'end of life decisions'.
As a paediatrician, one faces the additional difficulty
that one's patient is often unable to voice his/her wishes
or feelings. When faced with having to decide what to do
for their child ('to continue or not to'), parents are
often unable to come to a decision. Quite often during the
course of such lengthy discussions, one of the two parents
eventually asks: And what would you do, Doctor?
Up till now, that question remained a theoretical one for
myself. Being a parent now, this question would now carry
significantly more 'real' weight... How would I honestly
answer such a question??
I have read the recent theme issue on evidence based medicine and the
various articles have raised some disquiet, mainly because they seem to be
applying a concept of evidence based practice which assumes centralised
imposition of rules, rather than the generally accepted concept of seeking
and analysing the best evidence, using clinical judgment and adapting
these to the patients wishes,
I have read the recent theme issue on evidence based medicine and the
various articles have raised some disquiet, mainly because they seem to be
applying a concept of evidence based practice which assumes centralised
imposition of rules, rather than the generally accepted concept of seeking
and analysing the best evidence, using clinical judgment and adapting
these to the patients wishes,
Most authors appear to have made the assumption of medical
epistemology being an absolute form of knowledge, and attack EBP (Evidence
based practice) as providing imperfect knowledge, I was expecting a
variant of the ontological argument to emerge but thankfully the Cartesian
absolutism did not progress.
Medical diagnosis is similarly treated as an absolute – though we regard
ourselves as “knowing” a diagnosis it is not the meaning of the verb “to
know” as applied by the majority of your authors. “Knowing” to a medical
practitioner, is (or should be) a probabilistic assumption. “Knowing” a
diagnosis means we have matched in our memories a set of facts with what
we observe, or clinically judged to be present, it is a label for
classification and prognosticating it is not an absolute reality which
most of your authors seemed to have assumed. “Knowing” a treatment
similarly means we have matched a label (diagnosis) with past memories it
is similarly subject to weaknesses of our memory systems, and our
emotions. “Knowing” means that the assertion is highly probable not an
absolute.
While EBP has been hijacked by governments, government sponsored disease
lobby groups, and even the pharmaceutical industry and so called
guidelines produced it is inevitable that they will reflect the prejudices
and beliefs of the writer(s), and may reflect the extent of knowledge up
to the time the editor sends the final to the printer, that this may be
several years before the reader comes to apply it means that, though
evidence based, it is no longer current evidence. That this process has
occurred is irrelevant to the process of evidence based practice as the
principle of EBP means the practitioner will assess the guidelines as they
would any other set of information. A person considering the use of a
guideline should, as a first step see when it was published, and what
evidence is quoted. If there is no evidence base quoted throw the damn
thing away.
Another major concern was the expressed belief of some authors in the
immutability of knowledge. Though we have an agreed set of diagnostic
labels their application varies throughout world, we cannot even reach
consensus on the diagnosis of death (one of the epidemiologists binary
states) – our knowledge will always be imperfect and subjective. The
application of EBP (it is a process not a philosophy) aims to reduce the
subjectivity of externally acquired knowledge (i.e. what we do not observe
ourselves) because we recognise the imperfections of the system which
generates that knowledge. Poor experimental design, fraud, selective
publication, omission of key data to push a product, poor statistical
technique all act to mislead us when we are discussing options with our
patients and what the Cochrane collaboration, and meta analysis, and
systematic review do is hopefully weed out the misleading data. Of course
any systematic review will be subjective – we can reduce subjectivity( or
social values) not abolish it.
As individual practitioners our response to our patients and their
diagnoses becomes coloured by our experiences, we are animals we wish to
avoid pain both physical and emotional, one poor outcome may colour our
advice to the detriment of the patient – it is because of this we need a
source of up to date clinical evidence even though it will always be
imperfect and incomplete. In the past when medicine was less dynamic
textbooks sufficed as this source of evidence but reliance on textbooks in
our computerised society is decreasingly valid.
The application of EBP to quality improvement is also a process,
people who do not realise the realities of dealing with autonomous human
beings may assume that failing to prescribe what is suggested by current
evidence reflects poor practice – the only person who can make that
judgment is the practitioner – it is they who negotiates the treatment
plan, it is they to whom the patient expresses their fears beliefs and
prejudices and no one else can be party to that special arrangement. The
application of EBP in quality improvement is flagging deviation from
evidence and asking the practitioner to reflect on why they reached that
course of action.
Evidence based practice is a tool, just as a computer is a tool. Neither
represent a replacement of clinical judgment, or clinical skill and that
they are misused by the ignorant to try to alter our behaviour is not
valid grounds for rejection. Evidence based practice simply a further
change in the practice of medicine that our successors will master over
time, and some of us are trying to master now.
My apologies for the brevity of the arguments but this is merely a letter.
Professor F. Baylis in her symposium on the ‘Olivieri debacle’ examines a highly debated controversy.[1]
I
would like to look at the developments from a different angle. Olivieri
debacle, to me, is an example of a crisis where academia, researchers and
the bioethicists worked in unison for a common noble cause.
The situation that the author tries to portray as "a proud moment in
time...
Professor F. Baylis in her symposium on the ‘Olivieri debacle’ examines a highly debated controversy.[1]
I
would like to look at the developments from a different angle. Olivieri
debacle, to me, is an example of a crisis where academia, researchers and
the bioethicists worked in unison for a common noble cause.
The situation that the author tries to portray as "a proud moment in
time for Canadian bioethics" may not look very proud to everyone as
evidenced in the editor’s note about the "'perils of heroism' which stem
from the narcissistic striving for personal glory".[2] Earlier discourses
in this subject have always reminded me that the researchers should be
very careful in signing research agreements with sponsors. Subsequent
developments in this case have undoubtedly shown that the bioethics
community did rise to the occasion and act towards placing in position
suitable mechanisms to safeguard researchers from signing research
contracts with objectionable clauses.[3]
Mary Rowel’s responses to the symposium connote that her opinions
were distorted.[4] The author states that Ms Rowell initially refused to
write an article for the symposium and later her article "prompted her to
write about her experiences".[5] I personally hold that individuals should
not be compelled to speak aloud or write on something that they do not
want to. Many had provided directions to prevent such disasters in future [6,7] and even the supporters of whistle-blowers have presented well
balanced views on this issue.[8] Being a student and researcher in
bioethics, I would like to hear more future directions from the learned
teachers, including the author.
The unhealthy influence of industry on biomedical research and the
lassitude and intentional inactivity of universities and academic
institutions to support researchers with genuine causes are really
worrisome. More worrisome is the creation of any schism within the
academic community in an era where collective action can do a lot to
safeguard the scientific and ethical principles of biomedical research.
As a bioethics student from a non-industrialized country, I feel that the
bioethics community in Canada has acted realizing the full implications of
the case and worked towards developing safety mechanisms to safeguard from
similar disasters in future. In India, we suffered a lot due to the
policy of ‘divide and rule’ during the historic independent struggles and
learned the lesson to stand together in moments of crisis. The Olivieri
debacle once again showed the need for everyone including academia,
researchers and the bioethicists working together for a common cause.
References
1. Baylis F. The Olivieri debacle: where were the heroes of bioethics?
Journal of Medical Ethics 2004; 30: 44-49.
2. Savulescu J. Editor’s note: How can we make a difference? The
perils of heroism. Journal of Medical Ethics 2004; 30:52.
3. Ferris L.E, Singer P.A, Naylor C.D. Better governance in academic
health sciences centres: moving beyond the Olivieri/ Apotex affair in
Toronto. Journal of Medical Ethics 2004; 30: 25-29.
4. Rowell M. The Olivieri debacle: where were the heroes of
bioethics? A reply. Journal of Medical Ethics 2004; 30:50.
5. Baylis F. Responses to Mary Rowell. Journal of Medical Ethics
2004; 30:51-52.
6. Schafer A. Biomedical conflicts of interest: a defence of the
sequestration thesis - learning from the cases of Nancy Olivieri and David
Healy. Journal of Medical Ethics 2004; 30: 8-24.
7. Du Val G. Institutional ethics review of clinical study
agreements. Journal of Medical Ethics 2004; 30: 30-34.
8. Rhodes R, Strain JJ. Whistle blowing in academic medicine. Journal
of Medical Ethics 2004; 35-39 & Faunce T, Bolsin S, Chan W-P.
Supporting whistle blowers in academic medicine: training and respecting
courage of professional conscience. Journal of Medical Ethics 2004;30: 40
-43.
Re: Ethical problems arising in evidencebased complementary and alternative medicine
Edzard Ernst, Michael H. Cohen, Julie Stone
Mr McIntyre [1] rightly states that, in the UK, initiatives are underway
to regulate acupuncturists and herbalists. At the time of writing this
letter, a draft document is circulating. At the time of writing the actual
article (about one year ago), these initiat...
Re: Ethical problems arising in evidencebased complementary and alternative medicine
Edzard Ernst, Michael H. Cohen, Julie Stone
Mr McIntyre [1] rightly states that, in the UK, initiatives are underway
to regulate acupuncturists and herbalists. At the time of writing this
letter, a draft document is circulating. At the time of writing the actual
article (about one year ago), these initiatives had barely started and
certainly had not produced anything tangible. Regulation of UK
acupuncturists and herbalists may be in place in about 2 – 3 years (my
estimation). For the many other CAM providers (from aromatherapists to
yoga teachers), no such initiatives exist. My main point is that, except
for chiropractors and osteopaths, there is no statutory regulation at
present. This also means that today anyone in the UK, irrespective of
training or education, can call themselves an acupuncturist or herbalist.
Thus I truly don’t see the “glaring omission”. In terms of integrating
“orthodox and CAM for the benefit of millions”, McIntyre seems to forget
that evidence has to come before integration. In the case of the
therapeutic approach of UK traditional herbalism, I know of not a single
study that would constitute acceptable proof of efficacy. I’m also not
sure whether “the UK leads the world in the development of CAM” – it would
be nice but I do detect a bit of wishful thinking in McIntyre’s words.
References
(1) McIntyre MJ. Positive developments in CAM in the UK [electronic response to JME Advanced Publication: Ernst et al. Ethical problems arising in evidencebased complementary and alternative medicine] jmedethics.com 2004http://jme.bmjjournals.com/cgi/eletters/28/2/DC1#122
Regarding the Symposium on consent and confidentiality.[1]
We read with interest the recent papers on informed consent
published in a recent edition of the JME.[1] Whatever their differences,
and however much they questioned some aspects of the duty to respect
autonomy through attempting to obtain informed consent for therapeutic
interventions, there was a general agreement that competent adult...
Regarding the Symposium on consent and confidentiality.[1]
We read with interest the recent papers on informed consent
published in a recent edition of the JME.[1] Whatever their differences,
and however much they questioned some aspects of the duty to respect
autonomy through attempting to obtain informed consent for therapeutic
interventions, there was a general agreement that competent adult patients
are entitled to a core of basic information about their clinical options.
There was also a consensus that training in the process of obtaining
consent was important. In our experience, there are two different
dimensions of such training that are of particular interest. On the one
hand, students require good theoretical understanding of the ethical and
legal background to the professional emphasis now placed on informed
consent. On the other hand, they need practical training in relevant
communication skills and how to apply them to obtain consent for specific
clinical procedures To do so, doctors must obviously also have a good
understanding of these procedures. In a recently conducted study among
junior doctors in England (Schildmann J, Cushing A, Doyal L, Vollmann J.
The ethics and law of informed consent: knowledge, views and practice of
Pre Registration House Officers - manuscript submitted for publication),
we encountered serious problems as regards such understanding. No matter
how good their philosophical and legal knowledge may be, PRHOs will not be
able to deliver the minimal standards of informed consent outlined by
O’Neil unless, suffice it to say, they know what – practically speaking -
they are talking about![2]
Thus, in contrast to the results of the study of G Bravo et al.
published in the same issue of this journal, almost all PRHOs taking part
in our survey had a good legal understanding of the differences between
competent and incompetent patients.[3] This may be interpreted as a
positive result of the curriculum change at their specific medical school
which includes sustained sessions about informed consent. These embrace
ethics, law and communication skills. Despite this understanding, however,
the junior doctors taking part in our study still experienced problems
about their role in the consent process. These pertained to time pressure
and a lack of support by senior doctors, as well as pressure on them at
times to obtain consent in circumstances where they had been taught that
they should not . This gap between the standards of informed consent
currently taught to medical students and the clinical realities that they
face, and into which they are thrusts, is an ongoing problem.[4]
If informed consent is to fulfil the purpose of respecting the
autonomy and dignity of patients, sufficient resources are required to
train young doctors to do the job properly, especially as regards their
understanding of procedures for which they are providing information and
their competence as communicators. One thing is clear. If they cannot
complete the task in accordance with the guidance issued by both the GMC
and the Department of Health, they should not be doing it at all.[5,6]
Trusts and Colleges should ensure that all supervisory staff are aware of
their responsibilities in this regard.
References
1. Symposium on consent and confidentiality. J Med Ethics 2003; 29:2-
40.
2. O'Neill O. Some limits of informed consent. J Med Ethics 2003; 29:4
-7.
3. Bravo G, Paquet M, Dubois MF. Knowledge of the legislation
governing proxy consent to treatment and research. J Med Ethics 2003;
29:44-50.
4. Doyal L. Closing the gap between professional teaching and
practice. British Medical Journal 2001; 322:685-686.
5. Department of Health. Reference Guide to Consent for Examination or
Treatment. http://www.doh.gov.uk/consent/refguide.htm (accessed March 27,
2003).
6. General Medical Council. Seeking patients' consent: the ethical
considerations. London: General Medical Council, 1998.
We write in response to the original article “Differences in medical
students’ attitudes to academic misconduct and reported behaviour across
the years-a questionnaire study” by Rennie and Rudland published in this
journal April 2003 edition.[1] Current and former Dundee Medical School
students are concerned at the media misinterpretation of the study and the
consequences that this branding of “disho...
We write in response to the original article “Differences in medical
students’ attitudes to academic misconduct and reported behaviour across
the years-a questionnaire study” by Rennie and Rudland published in this
journal April 2003 edition.[1] Current and former Dundee Medical School
students are concerned at the media misinterpretation of the study and the
consequences that this branding of “dishonesty” will have on Dundee
Medical School’s reputation and also as individuals embarking on their
medical careers.
This study was originally published in the BMJ in 2001,[2] the data
being collected more than two years prior to that. In the student response
to this original study, it was noted that the study had taken place at the
time of the introduction of the new curriculum and “students were being
asked to produce excessive documentation. Some students did not reference
source information properly-partly due to time pressures and partly due to
genuine ignorance of proper codes of reference practice”.[3] Further to
that, the “Scenarios” as described in the published paper, were phrased
more ambiguously than the actual scenarios that were used in the
questionnaires.
Dundee Medical School took the initial study very seriously. However,
they embraced the information from the study in a positive way. Guidelines
concerning what was considered fraud and plagiarism in terms of submission
of work were established. A code of practice was also developed and this
now has to be signed by all medical students on entry to Dundee.
Although much further statistical analysis has been done on this
study since that original publication, it still contains all the original
raw data. Republishing of this study and the media misinterpretation of it
has lead to a whole new generation of Dundee students feeling that they
have been marked out as “dishonest” when the Dundee Medical School
curriculum has now for several years fully implemented Guidelines to guard
against any misconduct.
References
1. Rennie SC, Rudland JR. Differences in medical students’ attitudes
to academic misconduct and reported behaviour across the years-a
questionnaire study. J Med Ethics 2003;29:97-102
2. Rennie SC, Crosby JR. Are "tomorrow's doctors" honest?
Questionnaire study exploring medical students' attitudes and reported
behaviour on academic misconduct. BMJ 2001;322:274-275
We would like to thank the authors and editors of the JME’s mini-
symposium on the Olivieri case for continuing and extending the dialogue
about this important challenge to the North American bioethics community.
This mini-symposium is of special interest to us as members of the
Canadian Bioethics Society’s “Working Group on Employment Standards for
Bioethics.” We are members of this Workin...
We would like to thank the authors and editors of the JME’s mini-
symposium on the Olivieri case for continuing and extending the dialogue
about this important challenge to the North American bioethics community.
This mini-symposium is of special interest to us as members of the
Canadian Bioethics Society’s “Working Group on Employment Standards for
Bioethics.” We are members of this Working Group precisely because we
believe that most of us in the Canadian bioethics community ought to do
more to respond to situations such as the Olivieri situation. We welcome
the opportunity to continue to learn from that situation and to move
forward to strengthen our Canadian community of bioethicists.
Our Working Group, as a formal body, originated at the 1999 Annual
Meeting of the Canadian Bioethics Society (CBS). At that meeting, a motion
was passed establishing a “Working Group on Employment Standards for
Bioethics.” The purpose of the Working Group was, and continues to be, to
examine the issues of ethicists’ roles and responsibilities and the
environment in which ethicists, particularly those practicing in a non-
tenured environment, work. We have been endeavouring to grapple with a
number of the kinds of issues raised in the mini-symposium, including
accountability on the part of both bioethicists and the organizations
employing them, standards of practice in bioethics, protection for
whistleblowers, and how to respond to problems inherent in the moral
climate of the organizations in which we work.
Among our undertakings to date:
• A Draft Discussion Paper, "Working Conditions for Bioethics in Canada;"
• A “Model Code of Ethics for Bioethics;”
• Workshops, panels, or discussions at the CBS’s Annual Meetings in 1999,
2000, 2001, and 2002; and
• An essay prize “to encourage junior scholars to engage in scholarly work
related to working conditions in bioethics; professionalism in or the
professionalization of bioethics; or the social role of bioethics.”
The Working Group’s current works-in-progress include:
• A Qualitative Study of Conflicts of Interest Among Bioethicists;
• A working paper on various models of workplace dispute resolution;
• A “model contract” for clinical ethics consultants;
• A framework for a peer support network.
A record of our work on these issues can be found on the CBS’s website, at
http://www.bioethics.ca/
We know that no one aspect of our work to date constitutes a panacea.
It’s likely that no draft document or peer support network could have
averted the Olivieri debacle. But we remain committed to the ideal that
this work is of value, and that ongoing discussion and open and frank self
-examination is crucial.
The JME’s mini-symposium reminds us that we have a great deal still
to do, and that this kind of work is urgently needed. We can ignore all of
these matters (since crises happen but rarely in any individual’s work-
life) but we do so at our peril. The publication of the JME mini-symposium
is a milestone – a wake up call for all of us working in bioethics. We
applaud the JME’s attention to this crucial issue, and invite the
bioethics community and its many stakeholders to join us in our continuing
attempts to grapple with this difficult issue in a constructive way.
Finally, we recognize the need for healing in the bioethics
community, and suggest that this healing will require collegiality and
constructive moves in the direction of reconciliation. Only in this way
will bioethics be strengthened as a community, and left more capable of
responding to cases like the Olivieri case in the future.
I very much like Levy’s first argument in his letter of response[1]:
‘[I]t is false to think that in all cases in which X is worse off as a result of Y's actions, X has had her rights violated by Y.’
Levy makes a good point that members of society are not discriminating against the deaf, when they use the spoken word and audible alarms, and so forth, as part of their everyday lives. Nobody...
I very much like Levy’s first argument in his letter of response[1]:
‘[I]t is false to think that in all cases in which X is worse off as a result of Y's actions, X has had her rights violated by Y.’
Levy makes a good point that members of society are not discriminating against the deaf, when they use the spoken word and audible alarms, and so forth, as part of their everyday lives. Nobody in the hearing community is personally responsible for the everyday difficulties faced by the deaf.
Levy seems to accept my claim that our society could have developed some other way. Societies develop through the actions of their citizens. We might imagine that X, who is deaf, is worse off than Y because Z, their distant ancestor, helped to spread the use of a spoken language which X cannot use. The failure of Levy’s argument lies in his second claim, which is essentially that Z was justified in establishing this logocentric norm because of the particular usefulness of hearing and the spoken word. Levy’s argument is meant to establish the innocence of both Y and Z, but I think that Z’s innocence is much harder to show.
It seems to me that it is just false that the primacy of the spoken word ‘reflect[s] the advantages of using all the modes of communication available to us’. We certainly do not use all of the available modes of communication. We do not use smell for signaling, we do not blow air on each other’s faces by way of speech, and we rarely touch to communicate. We do not communicate by dance or by blinking. Each of these modes has its own unique advantages and each could presumably be used as a complex, syntactic language. Though no current society uses these modes of communication, they all happened to develop so that those who cannot smell, blow or taste are not disadvantaged. Certainly, there are some minor advantages to hearing which are irreplaceable by other senses, but this is also true of smell, on which we do not depend at all. If we voluntarily live without sign language, which is uniquely useful in many situations, it is hard to see why we should view the discriminatory use of speech as a justified, non-arbitrary choice.
Sometimes the mere absence of a sense can have its own advantages, depending on the environment we live in. There are minor advantages to everyone being deaf or blocking their ears - for example, the ability to use deafeningly loud machinery in all places, at all times. Cars would run more efficiently without mufflers. Construction could proceed at night. One could own a Chihuahua. Deaf people could claim that the choice to deafen oneself and run an un-muffled motorbike would simply ‘reflect the advantages’ of being deaf. From this perspective, the natural benefits of hearing offer no justification at all for the elevated position of the spoken word in our society.
Levy’s claim that ‘our social world is necessarily designed so that certain abilities are rewarded more than others and certain limitations are more constraining’ is probably one of life’s harsh truths. Yet, as seems to admit, it is a contingent, historical fact that the limited, constrained people are the deaf people. Furthermore, as I have discussed, it is not a historical fact which has its basis in any clearly justified choice – unless it is justified by the fact that the deaf are a minority group. Perhaps Levy means to imply that, when building social rules, we may privilege the interests of the majority over the interests of the minority, since this arrangement will result in a lower level of suffering. Then, if deaf people were in the majority, the hearing should be doomed to a life of tinnitus caused by the noisy machinery run by the deaf. Their ‘aural hypersensitivity’ would seem like a necessary limitation, since their suffering would be caused by their social environment. Perhaps this suffering would be ‘simply inevitable’ and not discriminatory at all – but before we agree with that, let us consider the following argument:
What if it was ‘inevitable’ due to some similarly arbitrary facts of history, that black children were worse off than white children? Suppose we lived in a country where current attitudes were not particularly discriminatory, but where past discrimination, by people who are now dead, had left blacks with a tiny share of the wealth. Suppose we also agree that X, who is wealthy, does not wrong Y, who is poor, when X refuses to give Y his money. This is in line with the common-sense, capitalist morality that constitutes much of our society at present.
In such a society, the wealthy white majority would not be wronging the poor racial minority, when they simply hold on to their own money. The impoverished black minority would be less well off due to historical misfortune, and not wronged or discriminated against by any living people.
On Levy’s arguments, and these two premises, we should ‘think much less of’ black parents who do not surrender their children to wealthy infertile whites. We should tell them that, due to the actions of our now-dead forebears, they should not raise children who will be poor like them. I find this conclusion unacceptable, and I think it elucidates the problem with Levy’s argument.
The passage of history may absolve current individuals of discriminations from which they benefit. But it does not mean that the society is a just and non-discriminatory one. We have a discriminatory society comprised of non-discriminating individuals, clinging justly to their inherited lot. That is the problem for the deaf. Their children will be worse off as a result of some unjustified historical choices, and not their own reproductive choices. We should not require them to make reproductive choices which validate some historical injustice, no matter how prudent those choices are.
When we tell the deaf that their deaf children will be worse off, we are using the injustice of our society as a coercive tool, as an ultimatum. When we do this, we become responsible for the discriminatory nature of our society, and we wrong the deaf, just as we wrong a person when we hold them at gunpoint. Thus, the situation is in some ways unlike Levy’s description of the crazed gunman in the park – perhaps a more enlightening description would be this:
“Today there was a crazed gunman in the park who shot at everyone he saw. Nonetheless, some parents came to the park and their child was shot. The gunman thought much less of the parents whose child he had killed”.
I am surprised by glaring omissions in your article, Ethical problems
arising in evidence-based complementary and alternative medicine by Ernst,
Cohen and Stone. Their paper undoubtedly presents an outdated picture of
the development of complementary and alternative Medicine (CAM) in the UK
at this time
The authors state “that providers of CAM are often not medically
trained” and that “their...
I am surprised by glaring omissions in your article, Ethical problems
arising in evidence-based complementary and alternative medicine by Ernst,
Cohen and Stone. Their paper undoubtedly presents an outdated picture of
the development of complementary and alternative Medicine (CAM) in the UK
at this time
The authors state “that providers of CAM are often not medically
trained” and that “their understanding of anatomy, physiology, pathology
and other disciplines of Western Science may be limited…” It goes on to
say, “ Unlike the situation of widespread licensure in the US for
chiropractors, acupuncturists, massage therapists and to some extent
naturopathic physicians, most CAM professions in the UK are not
statutorily regulated (the only two exceptions in the UK are chiropractors
and osteopaths.)”
The authors fail to report that statutory regulation of the UK herbal
and acupuncture sectors is now imminent. There is no mention that in 2,000
the House of Lords Select Committee on Science and Technology published a
report on CAM [1] and that this report specifically called for the
statutory regulation of the acupuncture and herbal medicine sectors. Nor
do the authors refer to evidence given to the Select Committee (Sections
5.51 and 5.52) by the Under Secretary for State for Public Health, Yvette
Cooper, who told the Committee that on safety grounds, the Government had
specifically identified acupuncture and herbal medicine as therapies that
it would like to see achieve statutory self-regulation. She also pointed
out (Section 5.44) that the 1999 Health Act now provided a fast-track
route for the statutory regulation of a health profession previously only
achievable by cumbersome primary legislation.
The article also omits to mention that in 2001, the Government
responded to the Select Committee Report recommending that herbal medicine
and acupuncture should as soon as possible seek statutory regulation under
the Health Act 1999 [2] and that the following year the Department of
Health set up two independent committees, the Herbal Medicine Regulatory
Working Group (HMRWG) and the Acupuncture Regulatory Working Group (ARWG)
to give detailed consideration of how statutory regulation of acupuncture
and herbal medicine could best be achieved. Both Committees met regularly
throughout 2002/3 and published their recommendations in September
2003.[3,4] Having considered these two reports, the Government is set to
publish, any day now, a public consultation document seeking views on
aspects of the statutory regulation of herbal and acupuncture
practitioners in the UK. Following a thirteen-week consultation period,
the Government will once again take stock before finally consulting on
draft legislation that will eventually lead to legislation laid before
Parliament. Although there is no firm timetable, we anticipate the
statutory regulation of UK herbalists and acupuncturists to pass into law
in 2006. I submit that all this presents a very different picture to the
one painted by Ernst, Cohen and Stone.
As for training, it is accepted by the herbal profession that
herbalists of all traditions require a good standard of western medicine
including pharmacology. The Core Curriculum published in the HMRWG report
is a detailed account of this training, which is overseen by the
Accreditation Board of European Herbal Practitioners Association.
Traditional acupuncturists too must be trained in conventional western
medicine so that they can recognise the limits of their competence and
know when to refer. Several British Universities currently offer degree
training in these disciplines and such training has now been available for
the past decade. The UK leads the world in the development of CAM and its
level of acceptance surely does not so much represent a “challenge to
healthcare professionals of all disciplines” as Ernst et al assert, but
rather a golden opportunity to integrate the best of orthodox and CAM for
the benefit of millions of patients who clearly wish to access both
modalities.
References
(1) House of Lords’ Select Committee on Science and Technology,
Session 1999-2000. 6th Report. Complementary and Alternative Medicine. The
Stationary Office, 2000.
(2) Department of Health. Government Response to the House of Lords Select
Committee on Science and Technology’s Report on Complementary and
Alternative Medicine. The Stationary Office, March 2001.
(3) Recommendations on the Regulation of Herbal Practitioners in the UK A
Report from the Herbal Medicines Regulatory Working Group, published on
behalf of the HMRWG by the Prince of Wales’s Foundation for Integrated
Health, 2003.
(4) The Statutory Regulation of the Acupuncture Profession, the Report of
the Acupuncture Regulatory Working Group, published on behalf of the ARWG
by the Prince of Wales’s Foundation for Integrated Health, 2003.
Dear editor,
The Introduction[1] to the very welcome Olivieri Symposium focuses on a “timeline of the most salient events”. Unfortunately, Viens and Savulescu left out several events of fundamental ethical concern and accepted some “facts” that are highly questionable. Most surprisingly, they have fallen into a common error: emphasising the scientific argument, when that is not their expertise, and bypassing the funda...
Dear Editor
The paper by J Harris is well thought out and certainly discusses one of the most difficult issues a doctor may face; this includes not only breaking bad news but also helping his/her patients with any ensuing decisions regarding 'end of life decisions'. As a paediatrician, one faces the additional difficulty that one's patient is often unable to voice his/her wishes or feelings. When faced with hav...
Dear Editor
I have read the recent theme issue on evidence based medicine and the various articles have raised some disquiet, mainly because they seem to be applying a concept of evidence based practice which assumes centralised imposition of rules, rather than the generally accepted concept of seeking and analysing the best evidence, using clinical judgment and adapting these to the patients wishes,
Most...
Dear Editor
Professor F. Baylis in her symposium on the ‘Olivieri debacle’ examines a highly debated controversy.[1]
I would like to look at the developments from a different angle. Olivieri debacle, to me, is an example of a crisis where academia, researchers and the bioethicists worked in unison for a common noble cause.
The situation that the author tries to portray as "a proud moment in time...
Dear Editor
Re: Ethical problems arising in evidencebased complementary and alternative medicine Edzard Ernst, Michael H. Cohen, Julie Stone
Mr McIntyre [1] rightly states that, in the UK, initiatives are underway to regulate acupuncturists and herbalists. At the time of writing this letter, a draft document is circulating. At the time of writing the actual article (about one year ago), these initiat...
Dear Editor
Regarding the Symposium on consent and confidentiality.[1]
We read with interest the recent papers on informed consent published in a recent edition of the JME.[1] Whatever their differences, and however much they questioned some aspects of the duty to respect autonomy through attempting to obtain informed consent for therapeutic interventions, there was a general agreement that competent adult...
Dear Editor
We write in response to the original article “Differences in medical students’ attitudes to academic misconduct and reported behaviour across the years-a questionnaire study” by Rennie and Rudland published in this journal April 2003 edition.[1] Current and former Dundee Medical School students are concerned at the media misinterpretation of the study and the consequences that this branding of “disho...
Dear Editor:
We would like to thank the authors and editors of the JME’s mini- symposium on the Olivieri case for continuing and extending the dialogue about this important challenge to the North American bioethics community.
This mini-symposium is of special interest to us as members of the Canadian Bioethics Society’s “Working Group on Employment Standards for Bioethics.” We are members of this Workin...
Dear Editor
I very much like Levy’s first argument in his letter of response[1]:
‘[I]t is false to think that in all cases in which X is worse off as a result of Y's actions, X has had her rights violated by Y.’
Levy makes a good point that members of society are not discriminating against the deaf, when they use the spoken word and audible alarms, and so forth, as part of their everyday lives. Nobody...
Dear Editor
I am surprised by glaring omissions in your article, Ethical problems arising in evidence-based complementary and alternative medicine by Ernst, Cohen and Stone. Their paper undoubtedly presents an outdated picture of the development of complementary and alternative Medicine (CAM) in the UK at this time
The authors state “that providers of CAM are often not medically trained” and that “their...
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