Trainees and society alike should embrace the authors’ [1]
recommendation to shift the emphasis from patients’ right to refuse
student involvement in their care to that of the moral imperative of
patients to participate in medical education.
Our current healthcare system places the burden of medical education
upon those who through altruism or disempowerment do not veto student
involvement in their care [2]...
Trainees and society alike should embrace the authors’ [1]
recommendation to shift the emphasis from patients’ right to refuse
student involvement in their care to that of the moral imperative of
patients to participate in medical education.
Our current healthcare system places the burden of medical education
upon those who through altruism or disempowerment do not veto student
involvement in their care [2]. Familiar to every student is the thirty
year old refusing to allow his blood to be taken by a trainee, despite his
bulging veins presenting the ideal learning opportunity. Instead the
student attends to the charming eighty year old with collapsed, furtive
veins, who will unquestioningly consent, even though less experienced
practitioners will inflict pain in the attempt to take her blood.
Reiterating patients’ moral obligation to participate in education may
reduce the likelihood of this scenario being realised.
In addition, students and their trainers are obliged to protect the
most vulnerable patients from potential harm and exploitation by not
asking them to participate. Rather the most appropriate subjects for
medical education should be sought, including those from centres in which
training does not currently take place (including private wards and PFI
centres).
Patients who understand the value of their role in medical education
should have no moral qualms about sustaining justice in the healthcare
system, in the confidence that they themselves will be protected by the
medical profession when vulnerable.
References
[1] Draper H, Ives J, Parle J, Ross N. Medical education and
patients’ responsibilities: back to the future? J Med Ethics 2006;34;116
-119
[2] Ali FR. Obliged to participate. Student BMJ 2007;15;131
After the Editorial was written two further papers on induced
pluripotent cells have been published.
A group led by Daley at Harvard has also reported the creation of such
cells using very similar methods, and even more importantly Yamanaka's
group has reported that pluripotency can be induced without the oncognenic
c-myc factor used in their first publication.
As a complement to the information provided in the interesting
article on the involvement of doctors in the assisted death (1), we show
the situation of the problem in Spain.
With regard to the current legal situation, the spanish Penal Code
(2) dedicates the article 143 to the induction to suicide and punish with
a penalty attenuated, which causes or cooperate actively with acts
necessar...
As a complement to the information provided in the interesting
article on the involvement of doctors in the assisted death (1), we show
the situation of the problem in Spain.
With regard to the current legal situation, the spanish Penal Code
(2) dedicates the article 143 to the induction to suicide and punish with
a penalty attenuated, which causes or cooperate actively with acts
necessary and direct to the death of another, by the express request ,
serious and unambiguous it, in the event that the victim suffers from a
serious illness that necessarily lead to his death or produces serious
suffering, permanent and difficult to bear.
Anyone can do it and it is not necessary to be a doctor.
Whith regard to the medical professional position, the spanish Code
of Medical Ethics and Deontology (3) strongly condemn assisted dying in
any form, in this way: the doctor never intentionally cause the death of
any patient, even if the specific request from him or her.
As can be seen, the professional situation in Spain is fully
consistent with the standard of the World Medical Association Resolution
On Euthanasia (4) , adopted by the WMA General Assembly in Washington 2002
that states:
1. The World Medical Association reaffirms its strong belief that
euthanasia is in conflict with basic ethical principles of medical
practice, and
2. The World Medical Association strongly encourages all National
Medical Associations and physicians to refrain from participating in
euthanasia, even if national law allows it or decriminalizes it under
certain conditions.
We declare that we do not have conflict of interests.
References
(1) G Bosshard, B Broeckaert, D Clark, L J Materstvedt, B Gordijn,
and H C Müller-Busch. A role for doctors in assisted dying? An analysis of
legal regulations and medical professional positions in six European
countries. J. Med. Ethics, Jan 2008; 34: 28 - 32.
(2) http://noticias.juridicas.com/base_datos/Penal/lo10-1995.html
(accessed on January, 20, 2008)
(3) http://www.cgcom.org/pdf/Codigo.pdf (accessed on January, 20,
2008)
(4) http://www.wma.net/e/policy/e13b.htm (accessed on January, 20,
2008)
Dear Dr Davies
Thank you for your helpful response to my paper, “Proportional ethical
review and the identification of ethical issues”.[1][2] I recognize that
regulation will inevitably reduce the amount of research, though I suspect
strangling is perhaps a bridge too far, I would be curious to hear whether
the Central Office for Research Ethics Committees' and now the National
Research Ethics Service's (NRES) annual repor...
Dear Dr Davies
Thank you for your helpful response to my paper, “Proportional ethical
review and the identification of ethical issues”.[1][2] I recognize that
regulation will inevitably reduce the amount of research, though I suspect
strangling is perhaps a bridge too far, I would be curious to hear whether
the Central Office for Research Ethics Committees' and now the National
Research Ethics Service's (NRES) annual reports show a significant decline
in the amount of research applications.[i] I'm unconvinced however that
this is the right approach to reducing the burden of regulation on
research. As I've argued elsewhere in this journal it appears to me that
this measure is only likely on average to save between one and three days
depending on the quantity of applications suitable for triaging and the
length of time the triage takes.[3] I'm inclined to think simplifying the
form is likely to be more efficacious, without involving the same risks in
terms of research participant safety.[ii]
I'm glad that a trial dry run is being undertaken though as I noted
in that paper:
“Remarkably, however, in these days of evidence-based practices,
trials of this new system have to the best of my knowledge not yet been
carried out, but instead will be carried out as part of the now-agreed-
upon implementation process. In other words, we are implementing a system
that is supposed to improve efficiency with little evidence that it will
in fact do this.”[3]
I'm curious as well about the statistical validity of the trial run,
and how close a parallel it will be to the new system if it is put in
place. Nonetheless I have been reassured by how NRES responded to the
feedback from the Association of Research Ethics Committees and others in
regards to the consultation plans and their willingness to engage with
their critics.[4]
I look forward to your report, and to hearing whether any icebergs
are spotted, although it should be noted, icebergs mostly float below the
surface so they tend to be hard to spot!
Notes & References:
i. Of course it would also need to be shown that changes to the figures
actually reflected the amount of research being carried out, I imagine the
amount of research reviewed by Local Research Ethics Committees declined
dramatically once Multi-Centre Research Ethics Committees were established
without the amount of research being carried out declining.
ii. I recognise that efforts to do so are underway.
1. Hunter, D. 'Proportional Ethical Review and the Identification of
Ethical Issues' Journal of Medical Ethics. (2007);33:241-245.
2. Davies, H. T. 'Developing commensurate review' Journal of Medical
Ethics. (2008); Eletter:
http://jme.bmj.com/cgi/eletters/33/4/241 (Accessed 9/01/08)
3. Hunter, D. 'Efficiency and the Proposed Reforms to the NHS
Research Ethics System' Journal of Medical Ethics. (2007);33:651-654.
4. Association of Research Ethics Committees. AREC Council Response
to "Implementing the recommendations of the Report of the Ad Hoc Advisory
Group on the Operation of NHS Research Ethics Committees: a consultation".
COREC/NPSA publication January 2006. April 2006.
http://www.arec.org.uk/consultations/AREC%20implementation%20reponse%20(final).pdf
(Accessed 9/01/08).
I would like to thank Mr Parker for the opportunity of clarifying my
paper presented by this somewhat vitriolic attack on its central premises
and conclusions.[1][2] In the article I give four arguments for why
systems of proportional review are unlikely to be as effective as full
blown research ethics committee (REC) review. These are: expertise;
ethical icebergs; ethical diversity and pluralism; and uncertainty.
Unfor...
I would like to thank Mr Parker for the opportunity of clarifying my
paper presented by this somewhat vitriolic attack on its central premises
and conclusions.[1][2] In the article I give four arguments for why
systems of proportional review are unlikely to be as effective as full
blown research ethics committee (REC) review. These are: expertise;
ethical icebergs; ethical diversity and pluralism; and uncertainty.
Unfortunately Parker has misinterpreted my paper as defending a democratic
ideal of research ethics review that it does not defend. I will address
Parker's points in turn.
First Parker states that I claim that: “the NRES triage system as the
worst of this type of delegated authority and it is this which he
concludes is ineffective.” This is not quite correct, I do not claim this.
There are of course worse systems of proportional ethical review available
than that proposed by the National Research Ethics Service (NRES), for
example researchers themselves deciding whether their study raised
significant ethical issues and needs ethics review.[i][3] And the original
proposals of NRES where one individual would make the final decision on
whether or not an application contained material ethical concerns was
clearly more troublesome than the presently proposed system where a
minimum of three individuals will be involved in the final decision.
[3][4] Instead I am arguing that proportional review systems as a class
are likely to be less efficacious than full blown research ethics
committee review and that in particular the proposal presented by NRES is
unlikely to do an adequate job of maintaining the current high standards
of research participant protection.[1][3]
The first argument I give is that a small group, in this proposal a
minimum of three people, are unlikely to possess the wide range of
expertise necessary to identify all the possible material ethical
concerns, or be familiar with the wide range of possible research
methodologies.[1] In regards to this argument, Parker gives the helpful
analogy of an A & E triage nurse who “prioritises patients; one may
note that she does not identify all the risks involved: she classifies
cases as the adviser does”. [2] The point being one presumes that the
triage nurse does what must be acknowledged as a fairly difficult job of
classification reasonably efficiently. Unfortunately this seems to be
beside the point, the triage nurse acts in a situation of need and will no
doubt sometimes make mistakes in categorization that would have been
avoided had an entire care team done the job. In essence this is exactly
what I am arguing, rather than simply having the A & E triage nurse
(the National Research Ethics Advisor) to make the final judgement about
the care of a patient (the research proposal) it is more appropriate that
this decision is made by the care team (a research ethics committee). As
such the analogy fails, I'll concede happily that triage might be a useful
way of efficiently making some initial decisions, but this doesn't mean
that it is an appropriate process for making a final decision, nor that
someone, however well trained, has the expertise to do this for the wide
range of projects that are presented to research ethics committees.
The second argument relies on existence of what I have dubbed
“ethical icebergs” which are ethical issues which a committee member
doesn't notice until the committee meeting. This is not an uncommonly
reported experience for ethics committee members. I conclude from this
that people may be blind to certain ethical issues depending on their
background and interests. In regards to this second argument, Parker makes
a fair point giving an alternative explanation of the ethical icebergs.[2]
That said he rather uncharitably suggests that the only evidence given of
the existence of these icebergs is my own experience of them, this is not
the case in the paper I note that the Association of Research Ethics
Committee's response to the consultation noted this as a common experience
of it's membership. [1] Furthermore I have since been involved in a
research project attempting to quantify this experience, which has reached
the conclusion that 50% of Research Ethics Committee members have had this
experience.[5] In that paper we discuss the possible explanations of
ethical icebergs in more detail, and while I concede that Parker's
explanation no doubt explains some of these incidents, it seems plausible
to me that ethical blindness likewise explains some of these incidents. In
any case whatever the explanation of ethical icebergs, to avoid these
icebergs many eyes make light work.
The third argument I give is that given the range of different
ethical views it is difficult for a small group to adequately reflect
these views. This has two detrimental effects. Firstly insofar as research
ethics committees are supposed to represent the general populace if some
views aren't represented then they are failing in their jobs. Secondly
given that people's ethical views colour what issues they see as ethically
important the existence of multiple ethical views will lead to very
different conclusions about the same application from small groups. In
regards to this third argument, unfortunately Parker has misread my
argument. He claims that I have mistaken the term “research ethics
committee” for a description and as such I hold “that the ethicist is the
paradigm person who will apply what he takes it to describe”.[2] I must
admit to being confused by this conclusion since nowhere in this article
do I express the opinion that ethicists are the paradigm members of
research ethics committees. I have I must admit argued elsewhere that they
are one important element of a research ethics committee.[6] But I did not
assert either here nor there that they are the paradigm members, in
actuality I argued elsewhere that the ideal research ethics committee has
a mixed membership with different expertise. Indeed it is precisely the
inability of one member to encompass the necessary expertise which
influences this conclusion and is the basis for my first argument. I'm
afraid the confusion here is Parker's not mine.
He then ventures into the area of meta-ethics further claiming “He
believes that people in making moral judgments are guided by ethical
theories”.[2] This is an unfortunate reading of my argument. I am not
suggesting that people as a general rule consult ethical theories when
making moral decisions. What I am claiming is that different people have
different ethical views, some of which can be expressed in terms of
different ethical theories. This should have been clear from this
statement in the paper: “Although I do not intend to imply that RECs often
overtly debate ethical theory, the subtext of several common debates that
take place at REC meetings is a background clash of different ethical
theories”.[1] What my argument relies on is that there are a variety of
different ethical views held by people, and that these different views
will lead them to see different things as important. It matters not
whether these different views are formalised in terms of ethical theories
or not that, for the sake of this argument, is beside the point. If there
are many different ethical views, then a few people are unlikely to serve
as appropriate representatives for these different viewpoints, whereas a
full committee is more likely to serve as adequate representation. As such
Parker's meta-ethical criticism is beside the point, as long as people do
hold different ethical views, the argument still stands.
Finally my last argument relies on the Condorcet's Jury Theorem which
alleges to show that “the collective performance of a group in arriving
at a correct judgement on the basis of majority rule will be superior to
the average individual performance”. Given this a larger group (a research
ethics committee) will in general be more reliable decision makers to a
smaller group (the National Research Ethics Advisers). Parker criticises
my last argument claiming that it is a “misunderstanding of part of
political theory to demonstrate the superiority of the democratic
process”.[2] He criticises the usage of Condorcet's Jury Theorem in this
context by arguing that this theorem is about the superiority of
democratic processes whereas in this case we are actually dealing with
expertise driven decisions. In particular he misunderstands the purpose of
the theorem. He appears to conflate Rousseau's idea of the 'general will'
with the theorem. Rousseau felt that the general will could not be
mistaken because whatever it wanted was, by definition, correct in the
best interest of the populace.[7] As Parker notes this is indeed a
tautology and so would be no proof at all. However this is not how the
theorem functions. The theorem is a mathematical proof based on the idea
that the more times the event is iterated the more likely it is that the
average outcome will occur.[8] If the average outcome is more likely to be
right (i.e. greater than 50%) than wrong then the more iterations the more
likely the right answer will be reached by the process. The proof only
functions in an expert driven environment since each individual chooser
must have a greater than 50% chance of arriving at the correct answer,
otherwise the theorem doesn't hold. As such Parker is mistaken in his
interpretation, what the theorem shows us is not the trivial “the
collective performance represents the collective” that he takes it to give
us but instead as I argued in the article: “the collective performance of
a group in arriving at a correct judgement on the basis of majority rule
will be superior to the average individual performance”.[1][2] As such a
larger group, all else being equal will make more reliable judgements.
I've shown in the paper and in this follow up that larger groups will
in general be more reliable ethical decision makers. This casts doubt on
the adequacy of the proposed changes to the NHS research ethics system in
terms of making accurate ethical decisions, and as such to providing an
appropriate level of protection for research participants.
Notes & References:
i. Before one dismisses this as absurd, I've heard anecdotal reports of
this form of pre-review being used in UK universities, often in
conjunction with a quick check sheet for identifying common ethical
issues.
1. Hunter, D. 'Proportional Ethical Review and the Identification of
Ethical Issues' Journal of Medical Ethics. (2007);33:241-245.
2. Parker, C 'Is Triage Incoherent?' Journal of Medical Ethics.
(2008); Eletter:
http://jme.bmj.com/cgi/eletters/33/4/241 (Accessed 9/01/08)
3. Central Office for Research Ethics Committees. Building on
improvement: implementing the recommendations of the report of the Ad Hoc
Advisory Group on the Operation of NHS Research Ethics Committees. Aug
2006.
http://www.nres.npsa.nhs.uk/docs/corporate/development/ImplementationPlan.pdf
(Accessed 09/01/08).
4. Central Office for Research Ethics Committees. Implementing the
recommendations of the Report of the Ad Hoc Advisory Group on the
Operation of NHS Research Ethics Committees: a consultation. Jan 2006.
http://www.nres.npsa.nhs.uk/docs/corporate/development/
ImplementationPlanConsultation.pdf (Accessed 09/01/08).
5 Elliott, L. Hunter, D. ‘The experiences of Ethics Committee
Members: Contradictions between Individuals and Committees’ Journal of
Medical Ethics. In press. Preprint available as a Current Controversy:
http://jme.bmj.com/preprint/elliott.pdf
6. Hunter, D. ‘The roles of research ethics committees: implications
for membership.’ Research Ethics Review. (2007) Vol 3, No 1, 24-26.
7. Wolker, R. Rousseau. (1995) Oxford: Oxford UP.
8. Koch T, Ridgley M. ( 2000) The Condorcet’s Jury theorem in a
bioethical context: the dynamics of group decision making. Group Decision
Negotiation;9:379–92.
There is evidence that regulation is strangling research (1). The
National Research Ethics Service, meeting its stated aim to "facilitate
ethical research" is therefore undertaking a pilot study in which
applications from 4 Research Ethics Committees are independently reviewed
by 3 volunteers (members of RECs appointed after advertisement and
interview)to see if it is felt studies present material e...
There is evidence that regulation is strangling research (1). The
National Research Ethics Service, meeting its stated aim to "facilitate
ethical research" is therefore undertaking a pilot study in which
applications from 4 Research Ethics Committees are independently reviewed
by 3 volunteers (members of RECs appointed after advertisement and
interview)to see if it is felt studies present material ethical issues. If
they don't, we are asking these volunteers to undertake review and we will
compare their analysis with that of the REC. This study is also being
conducted in Scotland.
We hope to have a report later in the year and will report the
sighting of any ethical icebergs!
REFERENCES
1. Sullivan R The good, the bad, and the ugly: effect of regulation on
cancer research The Lancet Oncology, Jan 2008:9;2-3
http://www.thelancet.com/journals/lanonc/article/PIIS1470204507703881/fulltext
For more similar references visit http://www.eric-on-line.co.uk and
"Search eric" using the keywords "Research regulation,hindering research"
This response to Hunter’s article, ‘Proportional ethical review and
the identification of ethical issues’, provides counter arguments to
undermine his understanding of the issues. It is shown that his attempt
to ground the effectiveness of the REC system in some similarity to
democratic ideals fails, and that his criticism of the concept of triage
is ineffective. The conclusion is that expert groups of whatever size
d...
This response to Hunter’s article, ‘Proportional ethical review and
the identification of ethical issues’, provides counter arguments to
undermine his understanding of the issues. It is shown that his attempt
to ground the effectiveness of the REC system in some similarity to
democratic ideals fails, and that his criticism of the concept of triage
is ineffective. The conclusion is that expert groups of whatever size
decide on the basis of evidence and argument rather than on a democratic
ideal of agreement.
Hunter’s article [1] argues that the National Research Ethics Service
proportional ethical review, or triage, is ineffective because only a
‘properly constituted research ethics committee ... (can effectively
identify) ... the risks and ethical issues posed by an application ...’ (p
241). One will see immediately from this that the ‘properly constituted’
committee is a group of experts and not simply a reflection of democracy.
He acknowledges the prevailing variety of proportional ethical review, eg
as in a REC sub committee, but considers the NRES triage system [2] as the
worst of this type of delegated authority and it is this which he
concludes is ineffective. He believes that other instances of the variety
would be more or less successful as they approach or depart from the real
functioning of the REC. He lists four issues affecting the REC which he
believes must be properly met for adequate functioning, these are:
expertise; ethical icebergs; ethical diversity and pluralism; and
uncertainty.
The first two issues refer to empirical matters requiring factual
judgements about efficiency or effectiveness. On the first issue he
points out that the triage system would have a series of stages or
evaluations of ethical risk, but thinks it would be doubtful that the
advisers at each stage would have the necessary experience or expertise
‘to assess the risks posed by the wide variety of research ...’ (p 242).
Though, a comparison here to provide an initial context is the A & E
triage nurse who prioritises patients; one may note that she does not
identify all the risks involved: she classifies cases as the adviser does.
Hunter points out that there are three stages in the advisers’ triage
system but feels it is doubtful in any of the stages ‘that any one person
could’ (p 242) properly assess the risks [3]. Certainly, the extent of
liaison between the advisers is relevant; and the use of collaborative
investigation of risk would be material in reducing the weakness of
solitary working. It is easy to accept that we all learn from one another
in a group or committee setting, but it is not conclusively shown by
Hunter that this is really a lack in the triage system [4]. Even if in
the formation of difficult decisions about risk the three individuals do
not regularly form a committee, he has not justified his doubt that well
trained and experienced advisers could adequately fulfil the task.
Regarding his second criticism of the triage system, the ‘ethical
icebergs’, Hunter suggests that ‘our background, experience and ethical
beliefs .... cause us to be blind to some issues and very sensitive to
others’ (p 242). His evidence for this is that during preparation for a
REC sometimes he misses serious ethical issues which arise in the
committee. But it seems wrong to base this gap in preparedness on
blindness to some issues, for if that were the case it would be normal to
doubt that the issues raised in the committee were serious [5]. It seems
to be at least as likely that this phenomenon is a matter of simply not
picking out all the relevant elements, ie it is a matter of scanning
research applications and noting or not noting relevant issues. It is
more a matter in committee of being reminded of something rather than
being taught it. This would include scientific matter for experts and
moral matters for lay members. Hunters conclusion that the NRES adviser
[6] is ‘more sensitive to certain issues and less sensitive to others’
(p243) is relative to background and training which can be amended or
strengthened, and is not clarified by resorting to an explanation of
‘blindness’. He suggests too that the adviser may rely excessively on the
coordinators’ decision about level of risk in an application, but in the
REC one can similarly rely on others to properly prepare or raise issues;
this would not be a fault restricted to the triage system: we all have to
do what is required of us.
Hunter’s third criticism of the triage system, ‘ethical diversity and
pluralism’, leaves the relatively factual considerations of his first two
concerns and plunges him into conceptual criticism. It is here that we
see an element of iatrogenesis, ie his treatment produces rather odd side
effects. In order to expose Hunter’s arguments it may be helpful
initially to notice the distinction between a name and a description.
Wittgenstein’s example [7] of this is ‘Mr Green is green’, and we can
offer ‘Wonderful beer is dreadful’. We have to notice whether a title is
a name or a description. Consider ‘research ethics committee’, is this a
name or a description? Hunter takes it to be the latter, and believes
that the ethicist is the paradigm person who will apply what he takes it
to describe.
There is nothing really misleading about this, one may remember that
in the days before research ethics committees there were moralists who
applied moral standards to human behaviour. If it were only the use of
the word ‘ethics’ replacing ‘morals’ it would not be very confusing, and
we could understand the ‘research ethics committee’ as referring to the
‘moral-research committee’. This descriptive title would save us from
Hunter’s view that ‘people cannot be expected to pick up on all the risks
and ethical issues .... because of the plurality of ethical positions
available’ (p 243). He believes that people in making moral judgements
are guided by ethical theories.
We are faced by the rather odd consequence from understanding the
research ethics committee as a name that our moral judgements are
structured and sustained by ethical theories, eg ‘a utilitarian may be
more sensitive to ... whereas a deontologist might be more concerned about
...’ (p 243) [8]. We may remember that when children are taught to catch
a ball they are not introduced to the activity through a study of the
theory of gravity. The theory of gravity is developed after human
experience of objects in space; the theory offers a theoretical account of
such phenomena. As with moral behaviour movement in space and time is
rational before the generation of any theories. One can see that young
children in school are not taught ethics or ethical theories; they are
taught to be kind to their neighbour, to be fair, to be tolerant. We are
all the same, more or less concerned with moral action, not with ethical
theories about moral action. From these considerations one can see that
Hunter’s conclusion about applications, ‘the decision on whether or not
they are ethically controversial will be theory dependent’ (p 243) is a
tautology. Similarly, his ‘As each of us has our own beliefs about
morality, people will inevitably make different judgements about the same
applications’ (p 243), ie his suggestion that our own beliefs imply
different judgements, is a tautology. We see that we can share beliefs
about morality and make different judgements, eg some think that telling
the truth to our neighbour is what is required whilst others favour a more
subtle hypocrisy.
Hunter has stumbled over the distinction between a name and a
description and fallen into the error of thinking that it is theories of
morality which give sense to moral action, when the opposite is the case:
moral action gives more or less sense to moral theories. It is worthwhile
for ethicists of whatever type to consider that one theory of gravity
produces clarity, whilst a number of theories of ethics produces
unclarity. The variety of ethical theories is not a confirmation of our
understanding of moral matters. He acknowledges that two RECs may come to
different judgements about the same application, but he thinks this is
minimized by the ‘people who represent the different ethical viewpoints
present’ (p 243). What is happening here, of course, is that people who
largely come from the same culture, share so many moral perspectives [9].
His conclusion that the three advisers in the triage system are unlikely
to represent ‘all or even most ethical viewpoints’ (p 243), or ethical
theories, completely misses the primacy of the moral view. Each of the
advisers in the triage will be fully equipped with individual moral
experience [10].
The fourth criticism which Hunter applies against the NRES triage
system is a misunderstanding of part of political theory to demonstrate
the superiority of the democratic process. The essence of his case is
that from that context the best decisions are made by the biggest group.
He extrapolates from this to suggest that any triage system must be
deficient and the full REC relatively admirable. However, one must
consider that when one is faced with technical or intellectual matters it
seems counter intuitive to leave decisions to the mass of people. There
is, of course, a body of statistical evidence supporting the idea of the
pre-eminence of democratic processes in making decisions about technical
matters, as opposed to the individual expert’s specific input; but this
evidence can be misleading. The democratic body which has created the
better treatments, perhaps disseminated through computer systems, is made
up of experts; thus, classifying decision systems within expert groups as
democratic does not support the political idea of democratic decisions.
Both the REC and the triage adviser are part of the relevant expert group;
so we cannot discriminate between them as the source of good decisions.
We may acknowledge that even when one is concerned with technical or moral
matters it cannot be certain that a group of twenty will outperform a
group of three. But let us look further at Hunter’s arguments.
Referring to the Northwick Park Hospital clinical trial he says it is
‘inappropriate for any person or small group ... to make the decision ....
because committees will be more reliable in making decisions in these
situations of fundamental uncertainty’ (p 243). He reminds us that in
this case animal testing did not indicate ‘severe adverse reactions’ (p
243) but nevertheless, retrospectively a number of individual experts in
the field criticized the protocol, ie it was not a situation of
fundamental uncertainty. Additionally, the REC approved it; but Hunter
does not dwell on this: he believes committees are more reliable because
‘mathematically we can show this to be true’ (p 243). To achieve this, he
then jumps from a bigger (expert) group relative to the triage advisers to
the system of democracy: ‘the Condorcet jury theorem ... (shows) ... the
superiority of democracy’ (p 243).
This contribution from Condorcet is a theorem about the value of
democracy, ie that the general will should be followed. The theorem is a
way of justifying the general will: ‘the collective performance of a group
in arriving at a correct judgement on the basis of majority rule will be
superior to the average individual performance, provided that certain
conditions hold’ (p 243). Simply put, this is the view that the majority
judgement better represents the majority than any individual judgement
would, ie it is a tautology: the collective performance represents the
collective. The relevance of ‘The main relevant condition ... that each
person has a greater than 50% chance of making the best decision’ (p 243)
is that the ‘best’ decision is the collective decision. Hunter is
associating the expertise of the REC with the value of democracy, and
contrasting such valuable expertise to the triage system which allegedly
does not possess the resources to arrive at correct judgement.
Hunter needs to show that the decision of the larger group or
democracy produces the best decision, but all he is doing is showing that
the larger group produces what it most desires. Clearly the use of the
word ‘best’ is ambiguous here: meaning something like ‘the decision
representing the views of the majority’ or ‘the most effective decision’.
His view is that ‘If people making the decision are competent in the area
in which the decision is being made, then the probable answer is likely to
be the best answer’ (p 244). This collapse into a tautology linking best
answer with competence undermines him completely. We have to conclude
that a tautology gives us no reason to say ‘This gives us some reason to
believe in the safety of numbers in grey areas’ (p 244). We need the
safety of experts who have been tested by other experts, not just
‘numbers’. Of course, the triage system may not in fact improve the
effectiveness of the REC, but Hunter has not demonstrated his imagined
deficits in the triage system; whilst his footnoted mathematical formula
aimed at supporting his faith in numbers is a monument to obscurity.
Mathematics will not lend intelligibility to a misconceived or misapplied
theory. We have to conclude that the triage method of dealing with
research applications on a basis of evidence and argument has not been
shown by Hunter’s use of arguments to be ineffective.
Author’s affiliations
C Parker Leeds (East) Research Ethics Committee, Lay Member, Clinical
Sciences Building, Room 5.2, St James’s University Hospital, Beckett
Street, Leeds, LS9 7TF
Competing interests: none
REFERENCES
1. Hunter D, Proportional ethical review and the identification of ethical
issues. J Med Ethics 2007; 33:241-245. Doi: 10.1136/ jme.2006.016782
2. Department of Health. Report of the Ad Hoc Advisory Group on the
Operation of NHS Research Ethics Committees. June 2005.
3. Central Office for Research Committees. Summary of comments on AHAG
Report, January 2006: 4.
4. Blunt J, Savulescu J, Watson AJM. Meeting the challenges facing
research ethics committees: some practical suggestions. BMJ 1998;316:58-
61.
5. Association of Research Ethics Committees. AREC Council Response to
“Implementing the recommendations of the Report of the Ad Hoc Advisory
Group on the Operation of NHS Research Ethics Committees: a consultation”.
COREC / NPSA publication January 2006. April 2006.
6. Central Office for Research Ethics Committees. Implementing the
recommendations of the Report of the Ad Hoc Advisory Group on the
Operation of NHS Research Ethics Committees: a consultation. January 2006.
7. Wittgenstein L, Philosophical investigations. Blackwell, Oxford, 1963.
8. Garrard E, Dawson A. What is the role of the research ethics committee?
Paternalism, inducements, and harm in research ethics. J Med Ethics 2005;
31: 419-23.
9. Edwards SJL, Ashcroft R, Kirchin S. Research Ethics Committees:
differences and moral judgement. Bioethics 2004; 18: 408-27.
10. World Medical Association. Ethical principles for medical research
involving human subjects (Declaration of Helsinki), Tokyo, 2004.
The analysis of the role of circumcision as a preventive for
HIV infection provided by Rennie et al. is driven by the social norm to circumcise [1] and shows a failure to appreciate
the place of circumcision within the context of other HIV preventives, the
ethics of recommending a health care intervention, the applicability of
proxy-consent, and everyone's right to autonomy and security of person. In
addition, the analysis is...
The analysis of the role of circumcision as a preventive for
HIV infection provided by Rennie et al. is driven by the social norm to circumcise [1] and shows a failure to appreciate
the place of circumcision within the context of other HIV preventives, the
ethics of recommending a health care intervention, the applicability of
proxy-consent, and everyone's right to autonomy and security of person. In
addition, the analysis is riddled with inaccuracies and unsubstantiated
assumptions [2]. Finally, circumcision as an intervention for the general
population may be misplaced.
Where circumcision fits in:
Three randomized clinical trials of the impact of adult circumcision
on HIV infection risk were recently completed in Africa.[3-5] Although the
subjects were randomized, the studies have several serious methodological
problems including selection bias, high crossover rates, lead time bias,
expectation bias (both on the part of the subjects and the investigators),
possible coercion for subject sign up (free circumcision, two weeks pay,
and two years of free health care), attrition bias, questionable
randomization practices, and early termination (which amplified the lead
time bias). These studies only followed the subjects for 18 to 24 months,
so the long-term impact is unknown.
The treatment effect was fairly small with an absolute risk reduction
ranging from 0.9% to 1.8%. The relative risk reduction was 53% to 60%. The
cost per circumcision ranged between $55 and $69. Extrapolating these
results to the general adult African population, using circumcision to
delay the acquisition of HIV would costs between $1269 and $3911 for each
case of HIV averted.[6] However, as the Rennie et al. have pointed out,
there are serious doubts about the ability to duplicate these result
outside of a research setting.
By contrast, a study using aggressive surveillance and treatment of
sexually transmitted infections found that it cost only $217.62 (1993 USD)
per HIV infection averted. HIV risk was reduced by 42%, the sexually
transmitted infections in study population were treated, and no one lost
the most sensitive portion of their penis.[7]
Condoms, when used consistently, offer about 99% protection. They cost
between 2¢ and 2.5¢ each.[8] So for the cost of one circumcision in
Africa, 3500 condoms could be secured. That's enough for protected daily
intercourse over the next ten years.
A concerted effort of promoting condom use with commercial sex
workers in Thailand substantially reduced the HIV infection rate there.[9]
Likewise, an approach of ABC (Abstinence, Be faithful, Condoms) reduced
the rate of HIV in Uganda was by 50%.[9] Rennie et al. do not need to wait
for "[o]ther, less invasive and more effective methods of HIV prevention"
to be discovered, because they already exist.
Male circumcision is not as promising as a vaccine. Vaccines that are
commonly administered offer over 90% protection from illness despite
repeated exposure. The HIV vaccines, to date, have not shown as much
promise, which explains why they are not currently in use. To compare
circumcision to a vaccine is like comparing the use of oral contraceptives
to using the rhythm method to prevent pregnancy.[10]
Finally, if condom use offers 99% protection, what value does
circumcision add? Basically, circumcision is for men who want to engage in
risky sexual behaviors but need to believe they have done something to
reduce their risk.
THE ETHICS OF "RECOMMENDATION"
The definition of "recommend" is to put forward something with
approval. In a given medical situation a physician can consider the
interventions and respond in four ways: 1) to actively discourage the
intervention, 2) to offer no advice, 3) to offer the intervention as an
alternative, or 4) to recommend the intervention. Rennie et al. make the
assumption that the intervention of male circumcision falls into the
fourth category without making the case that this is appropriate.
If an intervention is more likely to result in harm than benefit,
then the physician should actively discourage it. If the risks and
benefits are equally matched or unknown or minimal, then no advice is
appropriate. For interventions with potential benefits the distinction
between recommending it and offering it as an alternative involves
comparing the alternatives regarding effectiveness, side effects,
invasiveness, costs, availability, and expected compliance.
For example, primary enuresis has four interventions: 1) do nothing
and 15% will resolve spontaneously each year, 2) vasopressin, which is
moderately successful but has a high relapse rate and is very expensive,
3) imipramine, which is successful while you stay on it, is inexpensive,
but is extremely hazardous if moderate amounts are ingested accidentally,
and 4) operant conditioning using a enuresis alarm, which has a moderate
initial expense, has no side effects, and cures the condition in 85%. Of
these alternatives, the enuresis alarm is the recommended therapy because
it is the most successful, has the least side effects, and in the long
term is the least expensive of the active interventions. The only issue
may be compliance. The two medications could be offered as alternatives,
with the physician noting why they are offered but not recommended.
Circumcision as a preventive for HIV infection needs to be compared to the
alternatives. The ABC approach is more effective (99%-100% protection
versus 50%), less expensive (the money to provide one circumcision in
Africa can purchase 3500 condoms), has fewer side effects (and has the
additional benefits of protecting against sexually transmitted diseases
and unwanted pregnancies), is less invasive (no bodily parts are
amputated), and are more readily available (especially in developing
nations). The only unsettled component is compliance. Compliance can
depend on social pressures and how persuasively health care workers
promote condoms.
Based on this comparison, it would be unethical for health care
workers to recommend circumcision over the ABC approach. At best
circumcision can be offered as an alternative while making it clear that
it is less effective, more invasive, more expensive, and has more side
effects than the ABC approach.
To recommend an intervention when more effective, less expensive,
less harmful, and less invasive alternatives exist would be unethical.
PROXY CONSENT AND THE CIRCUMCISION OF NEWBORNS
Rennie et al. correctly characterize the position of circumcision
advocates, such as Benatar and Benatar, who believe that neonatal
circumcision does not threaten the health and the safety of the infant
sufficiently to disallow a parent's right to have their child circumcised
for non-medical reasons.[11] They fail to address the assumptions that
underlie this position.
The first assumption is that circumcision in newborns is ethical.
This premise needs to be established, as it is rather easy to argue the
alternative. For example, the American Academy of Pediatrics Committee on
Bioethics states that surgery on a newborn is only ethical when there is a
medical indication (such as disease, trauma, or deformity) and waiting
until the child is old enough to give their own consent would result in
further illness or loss of health.[12] A similar approach has also be
upheld in the legal system.[13] Without a compelling medical indication
that cannot be obtained without waiting, circumcision fails to meet this
criteria.
The second assumption is that parents have a right to direct a
physician to circumcise their infant. We have addressed this issue in
detail elsewhere, and after looking at ethical and legal standards,
parents do not have the authority (legally or ethically) to provide proxy
consent for the procedure.[13] To date, the only justification in the
literature for parents having the authority to direct a physician to
circumcise their child refused to engage the ethical or legal arguments,
but focused on the political arguments.[14] Rather than assume that
parents have this authority, Rennie et al. need demonstrate that they are
ethically entitled to this authority.
The third assumption is that a neutral outcome is sufficient to
justify a surgical intervention on a non-consenting minor. This has two
components, namely that the outcome is neutral and that neutrality is a
sufficient justification. Cost-utility analyses have at best found
circumcision to be health neutral,[15-17] while a more comprehensive cost-
utility analysis found neonatal circumcision impairs overall health.[18]
For the sake of argument, it can be assumed that the outcome of newborn
circumcision is neutral.
Performing a surgery on a non-consenting infant to obtain a neutral
result is unethical for several reasons. 1) It violates his right to
bodily integrity and security or person.[19] 2) It takes advantage of a
person in a vulnerable group. In another realm of medical ethics, the
Helsinki Declaration and US Federal Regulations require additional
protections for children involved in clinical research because of their
vulnerability and that the child is exposed to minimal harm.[20,21] 3) A
neutral outcome can be obtained without intervention, which is much less
invasive and incurs no financial cost or use of resources. 4) Physicians
receive financial remuneration for performing the surgery. For a physician
to perform a surgery that benefits the physician without benefiting the
patient is considered unethical by the American Medical Association.[22]
To validate the third assumption, Rennie et al. need to demonstrate
that infants are not entitled to bodily integrity or security of person,
are not a vulnerable group in need of additional protections, that
circumcision meets the minimal harm standard, and that physicians are not
financially reimbursed for the procedure.
In contrast to accurately portraying the position of those favoring
circumcision, Rennie et al. characterize the positions of those who object
to circumcision by providing a strawman. The ethical objections to
neonatal circumcision extend well beyond noting an absence of a defined
and sustainable benefit and a reliance on the principle of "do no harm."
Additional objections would include the permanent loss of the most
sensitive portion of the penis,[23] inadequate pain control,[24] serious
surgical complications (including death),[25] and violating the infant's
right to bodily integrity.[19]
Comparisons of parental proxy-consent for therapeutic interventions
and vaccinations and parental proxy-consent for circumcision are likewise
not valid. Parents can give proxy consent for prophylactic and
preventative measures if they preserve either public or private health.
Circumcision does not meet these criteria.[26] The authors need to find an
example where parents are allowed to give proxy-consent for the removal of
healthy, non-deformed tissue in an infant. The most logical equivalent
would be the removal of the prepuce in females. Even though there is
evidence that surgically altering female genitals is associated with
decreased risk of HIV infection in Africa,[27] such an intervention is
currently illegal in the U.S.
AUTONOMY, WHAT AUTONOMY?
The authors argue that there are several aspects of circumcising
immediately prior to the time of sexual debut that reflect positively on
the infant option. Anyone who has been in an automobile with an adolescent
behind the wheel knows that the perception of risk among young men at
sexual debut is highly distorted. This may apply to sexual practices as
well as driving. Yet, there has to be a point at which autonomy is fully
vested in the individual and not their guardians. The authors argue "Given
the vagaries of adolescent decision-making and the gravity of the
decision, parents may reasonably wish to choose circumcision for their
infants rather than wait for their sons to decide for themselves." The
authors are afraid that many men in their adolescence might refuse
circumcision from not accurately accessing their risk for HIV infection. A
more likely explanation for the low rate for volunteer circumcision in
young adults (3 per 1000[28]) is that genitally intact males value their
foreskins.
If the newborn is not circumcised we are confronted with the thorny
issue of assent of the adolescent. Rennie et al. appear to endorse a
position in which assent is only valid if the adolescent agrees with his
parents to be circumcised.[29] If this is the case, then why bother with
obtaining assent? The authors have positioned themselves into an ethical
quagmire. On one hand they feel perfectly comfortable denying autonomy
rights to the infant, but uncomfortable denying the same rights to a 16-
year-old. This antithetical position is common where the cultural
tradition of altering the genitals of newborn boys has a greater priority
than individual autonomy and the right to security of person.
The authors fail to acknowledge that the adolescent may have very
good reasons for not assenting. The adolescent may want to follow the
creed of his religion and not engage in fornication or adultery and marry
a woman with the same belief structure and diligence. There is clearly no
need for this male to be circumcised. Likewise, a decision to use condoms
consistently would provide risk reduction well above that of circumcision.
These are rational decisions that reduce the risk of HIV to nearly zero
and avoid a painful surgery that removes the most sensitive portion of the
penis. To circumcise this person without consent is battery. Any physician
who would perform a circumcision on an adolescent without their assent
would be acting in an unethical manner.
One problem with many adolescents is that are not articulate enough
to express the reasoning behind their decisions. Although adolescents make
many poor decisions, they have the autonomy to make them.
The authors also suggest that circumcising in the newborn period obviates the need to "conveying
information about sexuality and HIV/AIDS to the young person." This is
frightening, especially when everyone promoting circumcision for
prevention of HIV still recommends consistent condom use and education. If
HIV infections are important enough to violate the child's autonomy, then
the risk of infection is important enough to teach young people about
risks.
UNSUBSTANTIATED ASSUMPTIONS
1) Rennie et al. assert that the protective effect of circumcision is
greater when performed earlier in a male's life based on one study, when
other studies have provided conflicting results.[30,31] More importantly,
there are no studies that demonstrate that infant circumcision decreases
the risk of HIV infection.
2) Rennie et al. assert that "Circumcision at an early age can also
avoid the thorny problem of risk compensation" and that "it is unlikely
that the intervention would have an impact on a man's HIV risk
perception." This assertion is made without reference. To the contrary, a
representative population survey of men in the United States, where nearly
all of circumcised men are circumcised as infants, found that circumcised
men were more likely to engage in high-risk sexual behaviors,[32] which
suggests that risk compensation does occur following infant circumcision.
3) The authors state, "Opponents of neonatal circumcision typically
argue that surgical removal of a healthy child's foreskin without his
informed consent is always wrong." It is interesting that the authors are
inclined to believe that only opponents of neonatal circumcision would
make such a claim, when nearly every mainstream bioethicist would argue
that any medical intervention in a non-emergent setting without informed
consent violates the patient's autonomy rights.[33]
4) The authors fail to understand the differences between
circumcision and vaccinations. Vaccines are given primarily for infectious
diseases for two reasons: to prevent infection in the individual and to
prevent spread of the infection in the community. Vaccines that are
currently administered have very high efficacies. Just because a vaccine
exists, it does not mean it is routinely recommended. For example, there
is a vaccine for tuberculosis (TB), but it is not used in the United
States because it has low efficacy and the incidence of TB in U.S. is low
enough that administration of the vaccine interferes with proper, timely
diagnosis of the TB.
Vaccines are used because they are effective, have an acceptable rate of
side effects, and are the best available option. Circumcision of infants
is not known to be effective. For the illnesses that circumcision
proponents believe to be impacted by neonatal circumcision, there are
other less invasive, more effective interventions.
The authors then ask the readers to imagine what it would be like if
research showed that the neonatal circumcision could offer long-term
vaccine-level protections against HIV transmission. Under ideal conditions
in a research setting with coerced and motivated subjects, 50% protection
was seen. This is far short of the 90% protection that is generally
expected from vaccines and 99% protection the ABC can provide. Likewise,
in the absence of a long-term study, long-term protection can only be
speculated. Currently there are no long-term studies planned.
FOCUS ON HIGH RISK POPULATIONS
Finally, the timing of circumcision is a moot point. Currently, the
only sustained epidemic of heterosexually transmitted HIV is occurring in
sub-Saharan Africa. This epidemic is driven by the high sexual partner
exchange rate and having concurrent sexual partners in large open sexual
networks.[9] A country's HIV infection rate is not associated with male
circumcision rate, but rather social factors that promote these high risk
behaviors.[34] According the James Chin, a prominent HIV/AIDS
epidemiologist, a sustained heterosexual HIV epidemic without these high
risk sexual behaviors is nearly impossible.[9] Consequently, general
implementation of circumcision outside of sub-Saharan Africa would have
little impact on an epidemic that is not going to happen. Chin recommends
that our energies be focused on those populations exhibiting high-risk
behaviors and partners of those already infected with HIV. It is
impossible to predict what behaviors an infant will exhibit in later life.
ACKNOWELEDGEMENTS, COMPETEING INTERESTS, FUNDING:
None.
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I believe that the arguments for patient duties outlined in this
article definitely trascend those patients receiving publicly-funded care,
and - if any - apply equally to all patients. All patients receive the
benefit of the care and research involving those preceding them. All
providers and patients have a moral obligation to make the best use of the
resources available to preserve or restore their he...
I believe that the arguments for patient duties outlined in this
article definitely trascend those patients receiving publicly-funded care,
and - if any - apply equally to all patients. All patients receive the
benefit of the care and research involving those preceding them. All
providers and patients have a moral obligation to make the best use of the
resources available to preserve or restore their health.
My daughter Bella has hydranencephaly which is a neurological
condition you appear to be very familiar with. I am curious to know how
many children with hydranencephaly you have worked with? Bella is very
aware of her surroundings and people, she responds well and is a very
happy baby. She does not have the cognitive function of a normal infant
and would be described as profoundly physically and mentally disabled,
how...
My daughter Bella has hydranencephaly which is a neurological
condition you appear to be very familiar with. I am curious to know how
many children with hydranencephaly you have worked with? Bella is very
aware of her surroundings and people, she responds well and is a very
happy baby. She does not have the cognitive function of a normal infant
and would be described as profoundly physically and mentally disabled,
however I do not know how you can place less value on her life than anyone
elses, whose position is it to decide whether her life is worth living?
Her reality is no doubt different from ours but that does not make it
worthless. I have not had to fight for medical provision but I know many
families who have, and articles like this only to serve to wrongly educate
the Doctors who look after our children, and make our fight as parents
harder. There has recently been the biggest ever survey conducted on
children with hydranencephaly and I think many Doctors would find the
results surprising, www.hydranencephaly.com Looking at my daughter I
contest the opinion that she "can no longer be said to have an interest in
anything, even in life" given more time I would gladly present Bella as a
case study, her achievements are not the same as a neurologically typical
person but they are achievements none the less, she is a joy. Her
suffering as you put is, is difficult to decide as crying is her primary
method of communication therefore she may appear to be suffering but she
merely wants to be picked up by me. I would be interested in hearing other
opinions.
Trainees and society alike should embrace the authors’ [1] recommendation to shift the emphasis from patients’ right to refuse student involvement in their care to that of the moral imperative of patients to participate in medical education.
Our current healthcare system places the burden of medical education upon those who through altruism or disempowerment do not veto student involvement in their care [2]...
After the Editorial was written two further papers on induced pluripotent cells have been published. A group led by Daley at Harvard has also reported the creation of such cells using very similar methods, and even more importantly Yamanaka's group has reported that pluripotency can be induced without the oncognenic c-myc factor used in their first publication.
Dear Editor:
As a complement to the information provided in the interesting article on the involvement of doctors in the assisted death (1), we show the situation of the problem in Spain.
With regard to the current legal situation, the spanish Penal Code (2) dedicates the article 143 to the induction to suicide and punish with a penalty attenuated, which causes or cooperate actively with acts necessar...
Dear Dr Davies Thank you for your helpful response to my paper, “Proportional ethical review and the identification of ethical issues”.[1][2] I recognize that regulation will inevitably reduce the amount of research, though I suspect strangling is perhaps a bridge too far, I would be curious to hear whether the Central Office for Research Ethics Committees' and now the National Research Ethics Service's (NRES) annual repor...
I would like to thank Mr Parker for the opportunity of clarifying my paper presented by this somewhat vitriolic attack on its central premises and conclusions.[1][2] In the article I give four arguments for why systems of proportional review are unlikely to be as effective as full blown research ethics committee (REC) review. These are: expertise; ethical icebergs; ethical diversity and pluralism; and uncertainty. Unfor...
Dear Sir,
There is evidence that regulation is strangling research (1). The National Research Ethics Service, meeting its stated aim to "facilitate ethical research" is therefore undertaking a pilot study in which applications from 4 Research Ethics Committees are independently reviewed by 3 volunteers (members of RECs appointed after advertisement and interview)to see if it is felt studies present material e...
This response to Hunter’s article, ‘Proportional ethical review and the identification of ethical issues’, provides counter arguments to undermine his understanding of the issues. It is shown that his attempt to ground the effectiveness of the REC system in some similarity to democratic ideals fails, and that his criticism of the concept of triage is ineffective. The conclusion is that expert groups of whatever size d...
The analysis of the role of circumcision as a preventive for HIV infection provided by Rennie et al. is driven by the social norm to circumcise [1] and shows a failure to appreciate the place of circumcision within the context of other HIV preventives, the ethics of recommending a health care intervention, the applicability of proxy-consent, and everyone's right to autonomy and security of person. In addition, the analysis is...
Messrs:
I believe that the arguments for patient duties outlined in this article definitely trascend those patients receiving publicly-funded care, and - if any - apply equally to all patients. All patients receive the benefit of the care and research involving those preceding them. All providers and patients have a moral obligation to make the best use of the resources available to preserve or restore their he...
My daughter Bella has hydranencephaly which is a neurological condition you appear to be very familiar with. I am curious to know how many children with hydranencephaly you have worked with? Bella is very aware of her surroundings and people, she responds well and is a very happy baby. She does not have the cognitive function of a normal infant and would be described as profoundly physically and mentally disabled, how...
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