Arthur Schafer has a good point in regards to the
commercialization of IP, but how can anyone agree
with such a paranoid and polorazing view of the drug
companies. Banning them completely would only
create an underground of business transactions. At
least with gifts to the Universities we know who and
where the money is dispersed and for what.
It is time the public became more involved in th...
Arthur Schafer has a good point in regards to the
commercialization of IP, but how can anyone agree
with such a paranoid and polorazing view of the drug
companies. Banning them completely would only
create an underground of business transactions. At
least with gifts to the Universities we know who and
where the money is dispersed and for what.
It is time the public became more involved in this
discussion and that is why we are having a Conference
November 4-5, in Toronto to discuss the Scientist
as Entrepreneur, with Dr Nancy Olivieri. This is
not a controversy that is going to go away and I
applaud Professor Schafer for not pretending that it
doesn't exist.
JME is to be congratulated for offering the important Olivieri
Symposium free of charge on a pre-publication basis. The Olivieri and
Healy affairs occurred at one university, in one province. Based on the
articles by Arthur Schafer, Gordon DuVal, and Lorraine Ferris and
colleagues, non-Canadian readers might underestimate the scope of the
crisis confronting research ethics review in Canadian uni...
JME is to be congratulated for offering the important Olivieri
Symposium free of charge on a pre-publication basis. The Olivieri and
Healy affairs occurred at one university, in one province. Based on the
articles by Arthur Schafer, Gordon DuVal, and Lorraine Ferris and
colleagues, non-Canadian readers might underestimate the scope of the
crisis confronting research ethics review in Canadian universities and
hospitals. I would like to expand on two institutional aspects of that
crisis, with primary reference to Ontario (Canada's largest province, the
one with which I am most familiar, and the one to which the articles in
the symposium refer). I have no reason to believe that the situation
elsewhere is either better or worse.
If implemented, Gordon DuVal's proposal that REBs review many aspects
of research contracts before they are approved by universities and
hospitals would represent a major change for the better. However, his
belief that REBs are "independent" bodies misses a crucial point. McDonald
[1] has pointed out that 'university REBs generally report to the offices
that promote research.' In many universities, the overwhelming majority
of REB members are employees of the university or its affiliated
hospitals; in one case, at least, they are appointed directly by the
president of the university. Remarkably, no systematic published research
on this point appears to exist, or to be in progress. Neither does the
Tri-Council Statement of Principles, the federal granting councils' non-
binding guidelines for REBs, include any requirements that address the
independence of REB members. Under these circumstances, it is probably
difficult for REBs to take positions, such as asking to scrutinize
contractual arrangements for sponsored research, that will seriously
impede their institutions' quest for research funding. An REB taking this
position would also not be able to find any specific support for such an
interpretation of its mandate in the Tri-Council Statement. Given the
meagre resources normally available for REB activities, an REB wishing
(for instance) to commission a legal opinion on this point would probably
have to take up a collection among its members, or hold a bake sale.
Ethical concerns arising from the shift to private research funding
in universities as a consequence of (policy-induced) scarcity of public
funds are now generally acknowledged. Canadian hospitals confront a
similar situation, and the tradeoffs they make in response are even less
visible than those made by universities. In Ontario, hospitals can be
(and have been) taken over by provincially appointed trustees for failure
to balance their budgets,[2] but no comparable mechanism exists for
scrutiny either of the ethical short-cuts that may have been taken in the
interests of raising revenue, or of what happens to patient care once
"business development" becomes a priority. Lorraine Ferris and her
colleagues concede that hospital-based researchers may lack even the
minimal protections against reprisal that are available in the university
setting when ethics collide with institutional (read: financial)
priorities. The CEO of Toronto's University Health Network, the hospital
complex affiliated with the University of Toronto, recently stated in the
context of a shortage of resources for pain care that: 'We decided that
patient need, in a broad context, wasn't one of our criteria in deciding
priorities.'[3] This is suggestive of a culture in which some patients
have become more important than others, based inter alia on their value as
clinical trial participants, suppliers of scientifically interesting
biological materials, or sources of data that can then be "warehoused" for
purposes of subsequent research.
Under these circumstances, it is hard not to be sceptical about
proposals for improvements in the governance of research that fail to
incorporate genuinely independent oversight, meaningful sanctions for
misconduct, and a high level of transparency. On this last point, it
should be noted that Ontario's hospitals and universities are both exempt
from even the weak public disclosure requirements imposed on other public
sector agencies by provincial freedom of information legislation.
References
(1) McDonald M. Canadian governance of health research involving
human subjects: is anybody minding the store? Health Law Journal 2001;9:1-22.
(2) Heinz C. Government Taking Back Control of Public
Hospitals. Hospital News 2002;15(12),December:12,14.
(3) Papp L. Patients' torment ignored. Toronto Star 2003; June 20.
Firstly, I have a great deal of admiration for this book, which provides much stimulating and thoughtful debate. As such, the
book invites a certain amount of friendly criticism from a non-academic perspective.
What is significantly missing is any inclusion of the 'service users' authentic voice or information for students on the...
Firstly, I have a great deal of admiration for this book, which provides much stimulating and thoughtful debate. As such, the
book invites a certain amount of friendly criticism from a non-academic perspective.
What is significantly missing is any inclusion of the 'service users' authentic voice or information for students on the
'user/survivor' movement across UK and Europe at least. The history of the movement should by now be part of any mental
health course but this is still rare. There is concern about using the 'case histories' without consent even where they are
anonymised - this just pays lip service to rights which can so easily be sacrificed to expediency, including for publications. It
is important though the practice reveals an unacceptable imbalance of power in the relationship between health service users
and researchers etc. which is not addressed or highlighted for students. With only intellectual debate about such issues the
reality for those on the receiving end can be missed. Another significant absence is input from any non-white European
contributors - in a modern Uk this is a serious omission. It would also have been good to see some of the abuses in psychiatry
identified as having taken place in UK as well as in other countries such as Russia. The area of research invites debate as the
author claims too much intrusion or hold ups by perhaps unqualified LRECs is limiting devlopment - whereas lack of knowledge
is a problem sometimes proper checks are worth the wait unless more situations Alderheys are to happen. Once involved in an
area it can come to seem all important - which is why an inclusive debate about any aspect of healthcare is vital. This book
stimulates that in many ways but does not include a wide enough inclusion of views in my mind,to be wholly in agreement of
it's success - A follow up would be good. It is one I would want students to read though.
As a group of Nephrologists with a lively interest in ethical
problems and involved in an educational campaign on dialysis and
transplantation, we read with great pleasure the pragmatic and touching
editorial of HE Emson;[1] as the senior of the group, I (GBP) had the
occasion to watch the moment when the soul departs from the body; without
the fear of being “unscientific”, I agree with Dr Emson that whe...
As a group of Nephrologists with a lively interest in ethical
problems and involved in an educational campaign on dialysis and
transplantation, we read with great pleasure the pragmatic and touching
editorial of HE Emson;[1] as the senior of the group, I (GBP) had the
occasion to watch the moment when the soul departs from the body; without
the fear of being “unscientific”, I agree with Dr Emson that wherever the
soul goes, the body remains as an empty shell. The sadness of departure is
enhanced by the fact that we usually know, often in friendly terms, most
of the persons we see in the moment of end of life. At the meantime, we
share with our dialysis patients the anxious wait for a renal graft,
giving back freedom and a better, and hopefully longer life.
While we agree with the Author that our bodies should be considered
as a valuable loan from the biomass, we do not agree with the opinion that
the lack of donation is linked to the family attention on a dead body.
In our country, Italy, about one third of the potential donors are
“wasted”, going directly under the ground to produce corn or flowers, due
to the family opposition to organ donation.[2] The cult for the dead
body, the lack of trust in the Health Care System, the misconceptions on
brain death were all considered as potential explanations of this pattern.
As dr Emson says, the comments and theorizations are often performed by
philosophy experts, not directly involved in the care of the patients, nor
in running educational programs.
In the last three years, in the context of the activities of the post
graduate school of Nephrology, we run an educational campaign in Torino,
an industrial northern Italian city with about 900,000 inhabitants,
progressively involving all the high schools of the city (last two years
of high school: median students’ age 17 and 18 years).
In 2001-2002, 1676 anonymous questionnaires on different aspects of
dialysis, transplantation and organ donation were gathered from 14
schools. Students’ opinions were clearly in favour of living kidney
donation: 78.2% would donate a kidney to a close relative or partner
needing it, witnessing the diffuse knowledge that life with a kidney
transplant is highly preferable than life with dialysis.
However, the answers on cadaveric donation were sharply different. The
question, built as a “collage” of sentences from the newspapers was: “a
dear person of your family is in the emergency room; you do not know
his/her opinion on organ donation; the doctor says this he/she is brain
dead (the heart is still beating with the help of a machine); do you give
the consent to organ donation?” the answers were almost evenly divided
among yes (35.5%), not (30%), I dont’ know (34.5%).
The optional comments, recorded in about half of the questionnaires
(blank: 44.4 %) identify in the impossibility of deciding for somebody
else (20.5%) and in the fear of causing the “real death” of the beloved
person (19.9%) the main reasons for denying consent, followed by the lack
of trust in the medical class (3.2%).
None of the students mentioned the insult on the dead body nor gave
religious motivations; a minority (5.4%) considered organ transplantation
an “unnatural” procedure.
From our data, we suggest that, at least in our setting, the focus
for increasing organ donation should be on giving exhaustive information
on life (and on end of life), clarifying the concept of brain death, the
aims and itineraries of transplantation, more then on fighting with
prejudices on death.
Our direct involvement, as physicians, in educational campaigns may
not only give a valuable occasion to get in touch with the general
population, but also, as Dr Emson states, to fill the gap between the
large number of people who favour organ donation and the small proportion
who do anything about it.
References
(1) Emson HE. It is immoral to require consent for cadaver organ donation. J Med Ethics 2003;29:125-127.
The following statement was issued shortly after the performance of a
"public autopsy" in London. It may consolidate your views, especially
those on: "Expert" Witnesses: Did Von Hagens Act Professionally? It
reflects the concern of those many professionals involved in medical
dissections and investigations performed on human cadavers. The statement
was sent to the Council of Europe, and it still is p...
The following statement was issued shortly after the performance of a
"public autopsy" in London. It may consolidate your views, especially
those on: "Expert" Witnesses: Did Von Hagens Act Professionally? It
reflects the concern of those many professionals involved in medical
dissections and investigations performed on human cadavers. The statement
was sent to the Council of Europe, and it still is posted at
http://www.unifr.ch/efem/news.html
PUBLIC STATEMENT ON THE PUBLIC PERFORMANCE OF AN AUTOPSY
The European Federation for Experimental Morphology (EFEM), the
"umbrella" organisation that includes Anatomical Societies throughout
Europe, applauds Professor Dr Günter von Hagens sentiment concerning the
need to disseminate widely anatomical knowledge to the general public.
However, the EFEM cannot accept that an anatomical examination
presented as a dissection performed in front of a large audience is
capable of attaining that goal for the following reasons: 1 The human body does not consist only of isolated organs that can be
demonstrated like isolated car parts. Indeed, the body’s intimate
topographical relationships must be appreciated through personal
exploration and scientifically-directed dissection.
2 Anatomy must be learned through the application of several parallel
methods, among which dissection is very important, but it cannot be
separated from such other medical imaging techniques as radiology,
ultrasonic imaging, MR iconography, endoscopy, etc.
Moreover, the EFEM is aware of the strong moral and legal
responsibilities which underpin anatomical dissection. It is the duty of
academics associated with medicine to protect human dignity and to respect
the rights and privacy of patients. Such rights do not end at their death.
Therefore, the EFEM requests from European Regional, National and
International Authorities that they strictly control the application of
the Laws and Regulations governing donation, death certification,
transport, dissection and disposal of human cadavers used for anatomical
analysis or post mortem examination. Furthermore, special attention must
be given to the informed consent of the persons wishing to donate their
bodies. In particular, it is necessary to ensure that proper procedures
are undertaken, and that anatomical dissections and post mortem
examinations are only undertaken privately to maintain subject
confidentiality.
Prof. Pierre Sprumont, Secretary General of EFEM
Signed by: Prof. Bernard Moxham, Cardiff, President
Prof. Karl Zilles, Düsseldorf, Past President
Prof Berend Hillen, Nijmegen, Treasurer,
Prof. Jacques-Patrick Barbet, Paris
Prof. Lev L. Kolesnikov, Moscow
Prof. Diogo Pais, Lisbon
Prof. Jan Drukker, Maastricht, Former President
Prof. Chryssi Foroglou-Kerameos, Thessaloniki, Former President
V. English and A. Sommerville [1] argue for a “limited version” of
“presumed consent” for organ donation. They criticize the present law,
which they claim presumes most people do not wish to donate, saying that:
“It also seems somewhat bizarre that society assumes that most citizens
are more likely to refuse than to help others, when there is no harm or
benefit with either choice for th...
V. English and A. Sommerville [1] argue for a “limited version” of
“presumed consent” for organ donation. They criticize the present law,
which they claim presumes most people do not wish to donate, saying that:
“It also seems somewhat bizarre that society assumes that most citizens
are more likely to refuse than to help others, when there is no harm or
benefit with either choice for the deceased.”
Later, they say that:
“Presumed consent represents a positive endorsement of organ donation as a
good thing to do and with this formal acceptance will come a time when
donation will come to be seen as the norm, rather than the exception.”
The authors, however, presume (without argumentation) that organ
transplantation is a good thing, assuming that removing organs from whom
they call “the deceased” does not harm that individual.
Many organs which are “harvested” are taken from patients declared
“brain dead,” whether the criterion be “whole brain death” (in the U.S.)
or “brainstem death” (in the UK). In either case, the bodies of these
patients are warm, their circulatory systems are functioning, their
respiratory systems are functioning (in the sense of continued gas
exchange in the lungs and throughout the tissues of the body); the
ventilator provides oxygenated air. The fact that such patients are
dependent on machines to continue to live is morally irrelevant for
declaring them dead, for many obviously living people are machine-
dependent. Serious doubts have also been expressed about the
neurophysiological basis for both the US and UK criteria.[2] It is by
no means self-evident that “brain dead” individuals are dead; in fact, the
recent evidence suggests that they are very much alive. Writing “brain
death” statues into law does not magically alter reality, nor does
repeating the word “cadaver” in reference to “brain dead” individuals. It
may well be the case that the reason many people are hesitant about organ
donation is the legitimate fear that organs are routinely being removed
from living human persons. Even if one disagrees with this view and
accepts brain death criteria, there is more than enough room for
reasonable doubt on this issue. This is not reasonable doubt about a
trivial issue; the doubt concerns whether “brain dead” individuals are
being killed for their organs. Given the risk that living individuals are
being killed for their organs, it is unreasonable to assume that organ
donation is a good thing. Instead of a policy of “presumed consent,”
potential organ donors should be told clearly and truthfully what actually
goes on in organ donation–that “brain dead” donors are not dead in the
usual sense of the word, that their hearts continue to beat when the organ
donation surgery takes place. The reasonable course of action to take in
changing the law is to add more precautions before someone signs an organ
donation card, not fewer, and certainly not a policy of “presumed
consent.”
References
(1) English V and Sommerville A. Presumed consent for transplantation: a dead issue after Alder Hey? J Med Eth 2003;29:147-52.
(2) Potts M, Byrne PA, and Nilges RG. Beyond brain death: the case against brain-based criteria for human death. Dordrecht, Holland: Kluwer Academic Publishers, 2000.
This letter is in response to the article entitled “Non-heart beating organ
donation: old procurement strategy – new ethical problems”
I would like to start by saying that we are all too aware of the difficulties of dealing
with the issues related to organ donation however I was rather surprised
to read that certain healthcare professionals consider it appropriate to
consider restricting access t...
This letter is in response to the article entitled “Non-heart beating organ
donation: old procurement strategy – new ethical problems”
I would like to start by saying that we are all too aware of the difficulties of dealing
with the issues related to organ donation however I was rather surprised
to read that certain healthcare professionals consider it appropriate to
consider restricting access to a waiting list and even believe by doing so
would avoid dishonesty and false hope. It is my opinion that this would
only serve to fuel discontent rather than fairness. Does the patient not
have the right to know what their chances of receiving an organ are or are
we going to fail to move forward in the healthcare profession and continue
with this paternalistic idea that suggests the doctor knows what is best
for the patient. It is my belief that if the patient is informed of what
their chances are they will be better equipped to deal with their life as
it is. I do not consider this to be an example of the utilitarian
principle as I fail to see how it can offer the greatest good to the
greatest number of patient’s when so many would fail be fully informed as
to whether they have a realistic chance of receiving a transplanted organ.
What is there to be gained from hiding the truth from a patient who
already knows that they are dying? Where is loyalty and respect here?
In response to the evidence given to suggest that the commonest cause
of lost potential donation is due to refusal by relatives I would suggest
that the researchers are missing a vital point.[1,2] If relatives are
asked permission to obtain organs one may assume they are being asked to
consent to such a procedure. By doing so one may therefore conclude that
this would go against the law of consent, which states that the only
person able to consent is the person involved in the procedure. It would
appear the transplant teams need to rethink the rules. It is my belief
that the relatives are there simply to give the doctors their opinion of
what the patient would have wanted. They are not there to give consent.
In the paragraph headed “Options for increasing the cadaveric donor
pool”, you refer to patients in a persistent vegetative state (PVS) and
anencephalic infants being used in the donor pool as requiring a degree of
sophistry and that it would be difficult to expect widespread public
tolerance. This leads one to believe that the transplant societies may be
on the way down that slippery slope to deception in order to make it a
more attractive option. Perhaps to the mother and father whose son is in a
PVS it is not just another option to be explored, it is quite simply a
barbaric method of obtaining organs. Also, to suggest that the media are
jeopardising public confidence is also a concern. Granted, the media could
be guilty of misinterpreting facts, but the transplant teams may be
equally guilty of being ruthless and insensitive in their pursuit to
increase donor numbers. Many members of society believe they have a right
to know information which may one day influence them or their relatives.
Following this there is the discussion concerning “expansion of the
brain stem dead donor pool”. It would appear from this that the transplant
services appear to be more concerned with the statistics related to the
donor pool as well as increasing numbers of donors. It is my
interpretation that the transplant societies appear to advocate a system
which gives priority to improving the figures with little emphasis on the
patient donating.
If one is to advocate the ‘presumed consent’ method what is to become
of those vulnerable individuals who are unable to express their opinion
clearly? Are those with severe mental health and learning difficulties
going to suffer because of their disability? Also noted was the use of the
‘Solidarity Model’ but there was no discussion of the ethical problems
which cannot be glossed over: this model is perhaps guilty of treating the
public as children, offering a merit award system. Surely we are
forgetting the main point of transplantation is that it is a ‘gift’. It
should neither be exploited nor taken for granted.
Within the arguments in support of non heart beating organ donors
(NHBOD) the problems associated with waiting for the patient to progress
to brain stem death (BSD) are discussed. These imply to the reader that it
is merely an inconvenience to the healthcare professionals involved.
Sadly, the ethical problems are not expanded upon. However, an important
issue is overlooked here, that is, what priority is given to the patient?
Would you therefore advocate prolonging death to simply achieve a
diagnosis of BSD or would you prefer swift withdrawal of treatment to
ensure organs remain intact!!
Some discussion was given to continuing life sustaining treatment in
order to allow preparation time for the transplant team regardless of the
patients’ wishes. It is not acceptable to assume that the patient would be
willing to be artificially ventilated and kept alive, thus preventing the
patient from being diagnosed dead, for the sole purpose of optimising
organ retrieval. This is, in my opinion, tantamount to assault and
barbaric treatment of a human being. Even if the patient had agreed to be
a donor this would be seen as exploitation.
Uncertainty surrounding the different interpretations of diagnosis of
death and issues of consent would in my opinion almost certainly lead to
mistrust amongst the public as they become increasingly aware of
healthcare issues but who could blame them, when the profession
responsible for preventing and curing illness and disease cannot agree on
a universally accepted definition of death and a method of retrieving
organs for donation.
As suggested in the conclusion to this debate ‘consent’ is a key
issue. Patients should not be denied the right to donate their organs in
the event of their death, but neither should their wishes be overruled by
families unable to cope with the idea of donation. Likewise the transplant
teams must not assume that all patients are potential donors as this may
well lead the medical profession down the slippery slope to euthanasia.
What is required of the transplant services is an honest and open
approach together with the confidence to abide by the patients’ known
wishes prior to death even if it means upsetting the relatives. Striving
to obtain donors should not be influenced by statistics or an increasing
concern over the growing numbers in need of organs. The medical profession
must acknowledge that not all patients can be cured of their failing
organs. Indeed many patients waiting for transplants die each year.
Sometimes death is inevitable and is not necessarily a sign of failure.
We must not forget that organ donation is a gift. It should not be
exploited!
References
(1) Siminoff L, Arnold R, Caplan A, et al. Public policy governing
organ and tissue procurement in the United States: results from the
national organ and tissue procurement study. Ann Intern Med 1995;123:10–17.
(2) Hatfield A, Atkins M, Bodenham AR. Organ donation in a tertiary referral hospital—one year’s experience. Br J Anaesth 1999;82:794–5.
I read with great interest the June 2003 issue of the Journal of
Medical Ethics on human organs. The taboo on buying them is broken. Even
if we use all the available cadavers, there will always be many more sick
people in need. Organs save lives and the shortage is chronic, so why not
pay for them if that’s what it takes?
Janet Radcliffe-Richards suggests a free-for-all. That is, the
freedom of...
I read with great interest the June 2003 issue of the Journal of
Medical Ethics on human organs. The taboo on buying them is broken. Even
if we use all the available cadavers, there will always be many more sick
people in need. Organs save lives and the shortage is chronic, so why not
pay for them if that’s what it takes?
Janet Radcliffe-Richards suggests a free-for-all. That is, the
freedom of the rich to buy and the freedom of the poor to sell. If both
parties benefit from the transaction, she argues, who are we to interfere?
John Harris has a tamer proposal – a regulatory scheme whereby a public
body is the only legitimate broker and legally sanctioned transactions are
limited to national jurisdiction.[1] Leonardo De Castro expands somewhat on
global aspects of organ and human trafficking, providing examples from the
Phillipines, and suggests safety nets against exploitation through ethics
committee approval of monetary compensation depending on the
circumstances. But he is not ultimately convinced by the moral arguments
about the evils of money and the commodification of human body parts, and
seems to conclude with a defeatist message that if we can’t beat the
market we might as well join it.
This is a topical subject in Israel. Last week the government
approved a legislative bill that is similar to Harris’ proposal. Buying
organs will be prohibited except if in accordance with the proposed law:
all transactions are to be conducted through a statutory committee; donors
will receive compensation in the form of a quasi social security stipend
for recuperation and other expenses; and commercial brokerage will be a
criminal offence. The next day, on a television talk show there was a
woman who wanted to sell an organ to cover a debt of $60,000 she had
incurred (as a single parent of five chldren) since she was fired from her
job two and a half years ago. She complained that the market price was
only $15,000 (and $18,000 if you had a US visa). A representative of the
Ministry of Health told her that the government’s proposal was not a
solution for persons in need.
The same woman also said she did not understand how family and
friends could not give a kidney to someone they cared for. Sitting beside
her was a 33 year old woman, also a single parent (of two), who needs a
kidney. For the time being, she hooks up to dialysis at home every day
before she goes to bed. If her 4 year old wakes her in the middle of the
night, she can’t get up. She said that if she had the money – between
$60,000 and $180,000 depending on where - she would buy a kidney.
If the current proposal became law, it would not be a criminal
offence for these two women to enter a private agreement, if no payment to
intermediaries were involved, because both the donor and the donee are
protected from prosecution (as under the law of abortion it is the person
who performs the illegal operation that is the criminal, and not the
pregnant woman). To return to Harris’ model, this means that any such
regulatory scheme would legitimise a private market in organs. It would
not be expensive to jump the public waiting line. Indeed, the reward of a
one-time social security benefit is so meager, compared to the market
price for a kidney, that a statutory committee might find itself out of
work. The only problem for our two now-hypothetical women-in-need, would
be where to find a doctor who would perform the transplantation. If it is
illegal in their own country, they could go elsewhere – South Africa, for
instance, where there are private for-profit medical institutions which
provide quality services – for the rich, of course. The idea of any
national containment is naive given the moving forces of globalisation.
Legitimising payment for kidneys has implications for infertility
treatment and genetic research, both of which represent significant
financial interests in the global health market. If paying for a kidney is
okay then perhaps there is no objection to paying for gametes. There is a
shortage of eggs for women who need a donation for IVF, and many more are
needed for the cloning research that lo and behold promises the world to
solve the shortage of human organs and even overcome problems of
immunological rejection (again, of course, for the rich).
However, a trade in eggs is one step away from trans-national
trafficking in women, as go-betweens import women into the countries that
have appropriate medical facilities. People say, why not pay for eggs when
we pay for sperm? Why not, indeed, allow poor women such an economic
opportunity? But for that matter why should sperm donation not be
altruistic? There’s really nothing to it, less even than giving blood. Why
not outlaw buying and selling sperm and make it a criminal offence?
Donating eggs is nothing like donating sperm. It involves intensive
hormonal treatment and and an invasive egg retrieval procedure, the risks
of which are spelled out in any decent IVF informed consent form. As for
the medical aspects of kidney donations, the doctors assure us that giving
one of our two kidneys does not incur significant medical risks, that
organs from living donors are more efficacious for recipients than organs
from cadavers (better life expectancy rates), and that the earlier the
transplantation the better. However, even if there is no evidence that
donating a kidney increases the risk of renal failure (for how long have
we actually been collecting and following data?), it is still an invasive
procedure. What kind of medical care do donors receive? Who nurses them
afterwards? Who makes sure they get proper care for future complications?
How do we know that the donor wasn’t robbed of his cash when he walked out
of the hospital? How do we know that this particular kidney was not
snatched from an unknowing anaesthesized individual undergoing surgery for
some other reason?
Nonetheless, the notion persists that nothing can be done to combat
market forces, and that there is no moral ground to prevent people from
saving their own lives. The ideological problem is that we are committed
to the idea of liberty and autonomy, so how can we justify intervening in
private agreements between free individuals? What I would like to suggest
is that principles of social justice and human dignity provide such
justification.
Justice is at stake, because the moral question that the shortage of
organs raises is one of fair distribution. Globally, it is clear that the
need for organs for all persons suffering renal failure throughout the
world will not be satisfied. The rich will benefit from a market in human
organs and not the poor. There are many sick persons facing risk of death
in the world. Most live in countries that do not have the professional
capacity and technological infrastructure for either dialysis or
transplantation. Only some are fortunate enough to have access to medical
services that can save their lives, and the ability (or insurance) to pay
for their costs. In countries that have public medical facilities with
transplantation capability, the poor will wait on dialysis for organs from
cadavers while rich people will buy transplantation services with living
donors.
The argument for human dignity is a moral intuition, which Margaret
Radin articulated several years ago. To put it simply, there are certain
things that money can’t buy and that are not for sale. Once upon a time
medicine was a calling, but now it is becoming a business. Despite the
vagueness of the idea of human dignity, it is an intuitive value that
resists the notion of a contract for a pound of flesh. Freedom of contract
is not an absolute. Many legal systems refuse to recognize the validity of
contracts that are illegal, immoral or contrary to public policy.
In 1991 the World Health Organization published guiding principles on
organ transplantation. Guiding Principle 5 is crystal clear: “The human
body and its parts cannot be the subject of commercial transactions.
Accordingly, giving or receiving payment (including any other compensation
or reward) for organs should be prohibited.” Nothing has changed since
then except for the flourishing of an international black market of profit
-seeking private practitioners and institutions pandering to “consumer
demand”.
Considerations of distributive justice and of human dignity are
sufficient justification to restrict the liberty of individuals. It is
true that all we need is an organ, but there are also moral limits on the
means that we may employ for the end of saving our own lives. The value of
saving life does not give a sick person a right to an organ from a living
other at all costs. If saving lives is such an important value, we should
be encouraging altruistic donations and an ethic of solidarity, care and
compassion.
Reference
(1) Charles A Erin and John Harris
An ethical market in human organs. J Med Ethics 2003;29:137-138.
A current matter under discussion in the BMJ is the use of patients conscious or anaesthetised patients for the instruction of medical students in pelvic and rectal (my apologies if one includes the other) examination - with no consent from the patient. There was no indication of whether
children are used in this way. I do hope that this aspect of freely given, informed consent is examined in these pages....
A current matter under discussion in the BMJ is the use of patients conscious or anaesthetised patients for the instruction of medical students in pelvic and rectal (my apologies if one includes the other) examination - with no consent from the patient. There was no indication of whether
children are used in this way. I do hope that this aspect of freely given, informed consent is examined in these pages.
I read 'Why we should not seek individual informed consent for
participation in health services research' with weary disbelief. The
arguement made by the authors that UK citizens are members of the NHS and
as such are required to give up their medical records and choice about
whether to particpiate in research, displays a lack of understanding about
the citizen's relationship to the NHS.
I read 'Why we should not seek individual informed consent for
participation in health services research' with weary disbelief. The
arguement made by the authors that UK citizens are members of the NHS and
as such are required to give up their medical records and choice about
whether to particpiate in research, displays a lack of understanding about
the citizen's relationship to the NHS.
The idea that we are members of the NHS is laughable. Members of an
organisation have expectations, rights and indeed obligations. However
although the health service is funded by all tax payers - in effect the
entire population, we appear to have few enforceable rights. No right to
treatment. No right to an appointment at a convenient time. No right to
say who can see our clinical records. No expectation that we will be seen
promptly at the local A+E department if we are hurt. The vision offered by
the authors, that we give up autonomy if we are lucky enough to be
treated,amounts to a one-sided contract.
Yes, the NHS has a loyal following. Patients support the front line
staff who do a fantasic job for little pay and who all too often put up
with poor working conditions. On the other hand ,they are less than
impressed with the managment of the service. All too often the
administration of the health service lets us all down and indeed some
initiatives have the effect of undermining the trust that patients can
place in the NHS. Undermining both patient confidentiality and the limited
autonomy we have within the service appears to be designed to cause a
further loss of faith.
It appears that the authors believe that NHS services are a gift
within their power to allocate or withhold as they please depending upon
whther the patient is prepared to accept the conditions they seek to
impose. The argument is not only nonsensical, but flies in the face of the
oft stated government initiative to give patients greater choice and a
voice within the NHS.
Dear Editor
Arthur Schafer has a good point in regards to the commercialization of IP, but how can anyone agree with such a paranoid and polorazing view of the drug companies. Banning them completely would only create an underground of business transactions. At least with gifts to the Universities we know who and where the money is dispersed and for what.
It is time the public became more involved in th...
Dear Editor
JME is to be congratulated for offering the important Olivieri Symposium free of charge on a pre-publication basis. The Olivieri and Healy affairs occurred at one university, in one province. Based on the articles by Arthur Schafer, Gordon DuVal, and Lorraine Ferris and colleagues, non-Canadian readers might underestimate the scope of the crisis confronting research ethics review in Canadian uni...
Dear Editor
Firstly, I have a great deal of admiration for this book, which provides much stimulating and thoughtful debate. As such, the book invites a certain amount of friendly criticism from a non-academic perspective.
What is significantly missing is any inclusion of the 'service users' authentic voice or information for students on the...
Dear Editor
As a group of Nephrologists with a lively interest in ethical problems and involved in an educational campaign on dialysis and transplantation, we read with great pleasure the pragmatic and touching editorial of HE Emson;[1] as the senior of the group, I (GBP) had the occasion to watch the moment when the soul departs from the body; without the fear of being “unscientific”, I agree with Dr Emson that whe...
Dear Editor
The following statement was issued shortly after the performance of a "public autopsy" in London. It may consolidate your views, especially those on: "Expert" Witnesses: Did Von Hagens Act Professionally? It reflects the concern of those many professionals involved in medical dissections and investigations performed on human cadavers. The statement was sent to the Council of Europe, and it still is p...
Dear Editor
V. English and A. Sommerville [1] argue for a “limited version” of “presumed consent” for organ donation. They criticize the present law, which they claim presumes most people do not wish to donate, saying that:
“It also seems somewhat bizarre that society assumes that most citizens are more likely to refuse than to help others, when there is no harm or benefit with either choice for th...
Dear Editor
This letter is in response to the article entitled “Non-heart beating organ donation: old procurement strategy – new ethical problems”
I would like to start by saying that we are all too aware of the difficulties of dealing with the issues related to organ donation however I was rather surprised to read that certain healthcare professionals consider it appropriate to consider restricting access t...
Dear Editor
I read with great interest the June 2003 issue of the Journal of Medical Ethics on human organs. The taboo on buying them is broken. Even if we use all the available cadavers, there will always be many more sick people in need. Organs save lives and the shortage is chronic, so why not pay for them if that’s what it takes?
Janet Radcliffe-Richards suggests a free-for-all. That is, the freedom of...
Dear Editor
A current matter under discussion in the BMJ is the use of patients conscious or anaesthetised patients for the instruction of medical students in pelvic and rectal (my apologies if one includes the other) examination - with no consent from the patient. There was no indication of whether children are used in this way. I do hope that this aspect of freely given, informed consent is examined in these pages....
Dear Editor
I read 'Why we should not seek individual informed consent for participation in health services research' with weary disbelief. The arguement made by the authors that UK citizens are members of the NHS and as such are required to give up their medical records and choice about whether to particpiate in research, displays a lack of understanding about the citizen's relationship to the NHS.
The id...
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