K A Bramstedt maintains in its excellent article that, solely in the
case of transplant between alive, would be acceptable which a transfusion
contract was not signed if both, donor and receiver, are Witnesses of
Jehovah.
Nevertheless, we considered that, even in those cases,
the rejection to the transfusion must be used like exclusion
criterion.
K A Bramstedt maintains in its excellent article that, solely in the
case of transplant between alive, would be acceptable which a transfusion
contract was not signed if both, donor and receiver, are Witnesses of
Jehovah.
Nevertheless, we considered that, even in those cases,
the rejection to the transfusion must be used like exclusion
criterion.
In this case the reason has to be the consumption of
resources,although, more important, it is had to consider that, with our
intervention, in addition to not protecting the health of the ill Witness
of Jehovah, the danger for the health of the healthy Witness of Jehová
would be increased.
We declare that we do not have conflict of interests
MDD Bell (1) points out a number of serious ethical problems with
"presumed consent" for organ donation in the UK Human Tissue Act 2004. One
serious problem is that even in a system of voluntary organ donation, such
as the one in the US, true informed consent is not given. Organ donor
cards do not make it clear when claiming that the removal of organs takes
place after the donor is dead, that the poten...
MDD Bell (1) points out a number of serious ethical problems with
"presumed consent" for organ donation in the UK Human Tissue Act 2004. One
serious problem is that even in a system of voluntary organ donation, such
as the one in the US, true informed consent is not given. Organ donor
cards do not make it clear when claiming that the removal of organs takes
place after the donor is dead, that the potential "brain dead" donor is
not dead in the usual sense of the word. Surgery to remove organs begins
with the donor's heart still beating and blood gas exchange continuing in
the cells, tissues, organs, and systems of the body. The patient's being
on a ventilator does not change the fact that he or she is a living human
organism. Families who see their loved ones labeled "dead" when they
appear to be very much alive are wisely reluctant to support the removal
of organs from their loved ones.
Bell also refers to the continuing controversy over the "brainstem
death" criterion in the UK (just as controversy over the "whole brain
death" criterion continues in the US). (2) Beside the fact that brain dead
individuals still have organic unity, it is not clear that their brains
are completely dead. (3) For someone to give consent to organ donation,
one would need to be aware that the issue of the proper criteria for
determining death has not been settled. Potential donors and their
families are not currently informed of these uncertainties. Bell also
rightly mentions the uncertainties, both medical and ethical, surrounding
"non-heartbeating" organ donation, problems which should be revealed to
the families of potential donors.
If there is so much uncertainty over consent in a voluntary system of
donation, a system of "presumed consent" is even more morally problematic.
Such a system presumes that it is clearly rational and ethical for a
person to consent to organ donation, when the evidence indicates that this
may not be the case. An "opt out" system will likely be ineffective,
especially since potential donors will only be presented with a rosy
picture of organ donation. It is almost certain that under "presumed
consent," organs will be taken from donors who oppose organ
transplantation or who believe that removing vital organs from the
"brainstem dead" donor kills the donor. A "presumed consent" system of
organ donation makes a mockery of the term "consent" and should be
rejected.
References
1. Bell MDD. The UK human tissue act and consent: surrendering a
fundamental principle to transplantation needs. J Med Ethics 2006;32:283-
286.
2. Potts M, Byrne PA, Nilges RG, eds. Beyond brain death: the case
against brain-based criteria for human death. Dordrecht, The Netherlands:
Kluwer Academic Publishers, 2000.
3. Potts M, Evans DW. Does it matter that organ donors are not dead?
Ethical and policy implications. J Med Eth 2005;31:406-409.
The Olivieri symposium offers an opportunity to reflect on
the Canadian regulatory climate and public governance. Baylis’ paper
raises a concern about the Canadian bio-ethics community’s collective
silence and stewardship regarding the Olivieri case.[1] A similar
collective silence greeted the recent McDonald report [2] on research
governance in Canada. The McDonald report assessed the integrity and
e...
The Olivieri symposium offers an opportunity to reflect on
the Canadian regulatory climate and public governance. Baylis’ paper
raises a concern about the Canadian bio-ethics community’s collective
silence and stewardship regarding the Olivieri case.[1] A similar
collective silence greeted the recent McDonald report [2] on research
governance in Canada. The McDonald report assessed the integrity and
effectiveness of research governance arrangements and concluded that
serious reform was required.
Curiously, while the McDonald report was recently referred to in a
Canadian Medical Association Journal (CMAJ) editorial as an example of
Canadian leadership,[3] it has never received an editorial commentary in
the CMAJ. Nor has any article in the CMAJ ever addressed the McDonald
report. Yet the CMAJ created an ethics editorship and a senior Canadian
bio-ethicist was chosen for the position in light of the growing
importance of ethics in public policy.[4] A chapter of the McDonald
report also focused on the mandate of the Canadian Medical Association and
the provincial colleges of physicians and surgeons and how research
governance issues are part of their ethics responsibilities.[5] Nor has
the McDonald report been discussed in Canadian law and health journals
except by its principal investigator.[6] One might expect a national
study on research governance that raises public concerns to warrant more
than occasional references. Unfortunately, the McDonald report is rapidly
approaching the status of a footnote. Its concerns included token public
representation in research governance, widespread institutional conflict
of interest, a regulatory system and culture that favors the research
community, and a narrow view of ethics that is funneled through research
interests and agendas that influence the thinking and practices of
researchers, research institutions and Research Ethics Boards (REBs), - -
the ethics watchdogs.
The McDonald report noted that REBs tend to focus narrowly on consent
forms; pay too little attention to benefits and harms for research
subjects; researchers consider ethics to be a matter of navigating through
the REB; and institutions see ethics as little more than the efficient
processing of research proposals.[7] Revelations of REBs violating
ethics guidelines at academic centers and teaching hospitals heighten the
McDonald report’s accountability concerns.[8] And while federal granting
agencies can withhold research funding from academic centers that fail to
comply with ethics guidelines, this has not occurred to date.[9]
In light of this regulatory climate, the question should be pressed
whether it makes good governance sense to enhance REBs powers along the
self-governing institutional lines DuVal proposes in the Olivieri
symposium.[10] His proposal puts more power in local REB hands by
extending their watchdog function to oversee contracts with sponsors.
Clearly, it is sensible for universities and hospitals to ensure that
contracts are in keeping with good ethics and the law. But for local REBs
to be the regulatory watchdog raises concerns about conflict of interest.
As Health Canada notes: “there may be serious conflict of interest on many
different levels: within REBs; between researchers and sponsors and within
research institutions”.[11] REBs are also steeped in a tradition of
secrecy. Transparency is a key feature of good public governance and
especially important for watchdog bodies in order to ensure public trust.[12] An open and independent watchdog that is at arms length from
research institutions would better serve the public good.
Against the backdrop of REB violations and accountability concerns
raised by the McDonald report, the question also arises whether increasing
the bio-ethics watchdog function would justify public confidence in the
kind of self-regulating model of governance adopted by the University of
Toronto.[13] It has been noted that many bio-ethics centres, including
the University of Toronto, receive corporate funding.[14] Concerns about
the ethics of marketing and the marketing of ethics to serve institutional
ends extend beyond corporate sponsorship. Universities, hospitals and
staff have become entrepreneurial and are producing, testing and taking
out patents on drugs and medical devices. Canadian research centres also
advertise to recruit research subjects through local papers which note
that “protocols have been approved by the Research Ethics Committee”.[15]
Given REB violations at academic centres and senior bio-ethicists’ silence
over the Olivieri case and the McDonald report, Singer et al may
overestimate how much moral rigor and power bio-ethicists can exercise in
their institutions as public watchdogs.
There is growing media and public interest in governance issues due
to major corporate scandals. Concerns about corporate governance mirror
issues raised by the McDonald report. How long will it take before the
Canadian media broadens its governance lens to include the research
regulatory culture? A broader discussion about good governance that is
actually beyond the Olivieri case needs to take place. Must we await loss
of public patience, or can we take charge of the reform process?
(12) The Review of College Physicians and Surgeons of Ontario
Complaints and Discipline Process. July 2000.
(13) Ferris E., Naylor D., Singer P., Better Governance in Academic
Health Sciences Centres: Moving Beyond the Olivieri/Apotex Affair in
Toronto; JME forthcoming.
http://jme.bmjjournals.com/cgi/data/28/2/DC1/15
(14) Eliott C “Diary: The Ethics of Bioethics”, London Review of
Books, 2002: 24 (23): 36-7.
Potts (1) questions the validity of prospective consent to organ
donation as recorded on the organ donor cards in current use in the USA.
The situation is no better in this country. "Consent" as recorded on the
NHS Organ Donor Register is based on nothing more than a ticked box on a
form specifying organs to be taken after death. Such "consent" is surely
invalid, being at the very least far from fu...
Potts (1) questions the validity of prospective consent to organ
donation as recorded on the organ donor cards in current use in the USA.
The situation is no better in this country. "Consent" as recorded on the
NHS Organ Donor Register is based on nothing more than a ticked box on a
form specifying organs to be taken after death. Such "consent" is surely
invalid, being at the very least far from fully informed and arguably
based on misinformation - there being no mention of the fact that death
for transplant purposes will be certified on different, highly
contentious, criteria from those in otherwise universal use.
It may be that a majority of the names on the NHS Organ Donor
Register are there because of failure to appreciate, or even consider,
this vitally important fact. Almost certainly that will be the case where
the names of children are concerned. It may be that the 12 million or so
names on that Register will ultimately be seen as testimony to the power
of official propaganda in the "media" age. It is certainly not a
repository of valid offers of post-mortem organ donation fairly made on a
fully informed and mutually understood premise.
References
1. Potts M. When "consent" is not consent. e-letter to J Med Ethics
(re Bell MDD. J Med Ethics 2006;32:283-6), 18 May 2006.
As a bioethicist who works with and is a former board member of the
Canadian Down syndrome Society (CDSS)I was thankful that Julian Savulesque
noted the argument that "fetuses with Down's syndrome are 'devalued' and
that this represents discrimination.
The perspective of the CDSS is that Down is a condition and not a
disease. Persons with Down while different must be taken as equal members
of so...
As a bioethicist who works with and is a former board member of the
Canadian Down syndrome Society (CDSS)I was thankful that Julian Savulesque
noted the argument that "fetuses with Down's syndrome are 'devalued' and
that this represents discrimination.
The perspective of the CDSS is that Down is a condition and not a
disease. Persons with Down while different must be taken as equal members
of society, persons with specific and individual strengths and weaknesses.
To argue more generally a right to abort on the basis of their genetic
difference is to permit a eugenic pruning on the basis of incomplete
knowledge, and prejudice.
Down syndrome has always been in the forefront of the right against
genetic discrimination. It stands as a signal test case of the ease with
which ethicist and practitioners argue on the basis of parental choice for
selective abortion without considering the elements of social context that
may make parenting (or living with) a person of difference so challenging.
Thus I would argue that before considering the "right" for abortion on the
basis of genetic profile (sex, trisomy 21, 18, etc.) one must first addres
those elements that disadvantage to person who results.
These elements may include social prejudices (hence the location of
the example in India), social deprivation, limitations on social services
and support for persons of difference. If, as I and some others in the
"disability movement" argue, these are the critical factors involved in
such decisions then to not address them in this discourse is a grevious
failing and bad eugenics.
Finally, it is important to note that the issue of Down, and of a
fetuses choice, have greater resonance in the debate over persons of
difference generally. Assumptions concerning those with physically or
congitively restricted futures as a result of adult onset of disease
(Huntington Disease) or injury (spinal injury) are a transposition of this
concern to the greater field of disability studies.
Hopefully, in a future article these will all be addressed as a
singular critique of the assumptions that many bring to the simple
assumption that parental rights and utilitarian sense argue for selective
abortion, or among adults, termination, of those who are physically and
cognitively distinct.
Tom Koch
adj. professor geography (medical), Unviersity of British Columbia
adj. professor gerontology, Simon Fraser University
Bioethicist, Canadian Down syndrome Society (Resource Council)
Erin and Harris argue, as have others before them, for a regulated
market in human organs. The rationale is the imbalance between a limited
supply and growing demand for organs. Given that fact, and no others, it
makes "sense" to create a market that might increase supply.
The assumption of those who have argued this is that there are
neither risks nor dangers to donation and that the act of don...
Erin and Harris argue, as have others before them, for a regulated
market in human organs. The rationale is the imbalance between a limited
supply and growing demand for organs. Given that fact, and no others, it
makes "sense" to create a market that might increase supply.
The assumption of those who have argued this is that there are
neither risks nor dangers to donation and that the act of donation is
itself beneficent, and something to be encouraged. But living donors face
significant health risks both in surgery and post-operatively. These
include decreased function of the remaining organ, well-documented in the
case of living donors of a kidney, and those attendant generally on major
surgery.
As importantly, the work done by others on organ "donation"
internationally makes clear that there is a social inequality in these
"markets," one in which the poorest typically are convinced to donate and
sell, where money is returned, to the richestest. The work of Nancy Sheper
-Hughes is critical here, as is Locke's work generally.
More critically, and more generally, in many countries--the USA and
South AFrica being two I have studied--organ donation occurs within a
context of social and institutional inequality that assures a "free"
market will be biased against the poor and for the wealthy. In effect, it
may create a donor class, non-white and empoverished, for those who are
wealthier.
Indeed, as I have elsewhere argued, social inequalities in
healthcare, and in the graft organ distribution system, may exacerbate
existing organ shortages. Thus a market, however regulated, will likely be
inequitable and cause voluntary donations to diminish.
Before arguing for a market one therefore needs to consider the
structural inequalities in health care generally, and the graft organ
distribution specifically. Details of this argument, and data in support
for it, can be found in my text on the subject: Scarce Goods: Justice,
Fairness, and Organ Transplantation (Westport and London: Praeger Books,
2001). A list of papers detailing the research is listed on my website http://kochworks.com.
Tom Koch adj. professor geography (medical), Univ. British Columbia, Vancouver,
Canada.
adj. professor gerontology, Simon Fraser University, Vancouver, Canada.
Bioethicist, Canadian Down syndrome Soc. (Resource Council),
Calgarly, Canada.
This article ignores up to date knowledge of the physiology of
reproduction in its fascination with a mathematical and statistical model
and his illogical assumptions.
The ovum lives for 12-24 hours, and it can only be fertilised within
this short time(1). Outwith the fertile time, the sperm cannot reach the
ovum as the cervical mucus dries and forms a plug(2). The sperm can be
kept waitin...
This article ignores up to date knowledge of the physiology of
reproduction in its fascination with a mathematical and statistical model
and his illogical assumptions.
The ovum lives for 12-24 hours, and it can only be fertilised within
this short time(1). Outwith the fertile time, the sperm cannot reach the
ovum as the cervical mucus dries and forms a plug(2). The sperm can be
kept waiting in the cervical crypts for 4-5 days maximum prior to
ovulation. If a sperm reaches the ovum and fertilises it, it has shown it
has been healthy enough to win the race in the last sprint to the
fallopian tubes!
There is no evidence that there is any variability of viability of
the conceptus with time of fertilisation within this narrow window. The
viability of the new human being is dependent on his or her completely new
and unique genetic make up, which may be defective because of genetic
disease carried by the gametes. It also depends on the health of its
environment rather than the tiredness of the now dispensed propelling
mechanism of the sperm.
Once conception has occurred the next phase kicks into action,
progesterone rises up to about the 7th post-ovulatory day then Human
chorionic gonadotrophin (HCG) produced by the implanting blastocyst,
maintains the corpus luteum(3). Research has revealed variant forms of
ovulation and defects in implantation(4), some due to hormonal problems,
a short post-ovulatory phase or problems with the receptivity of the
endometrium but this is not related to the times of intercourse.
If implantation is faulty in some way, the couple may suffer
recurrent early miscarriages. These couples would therefore be wise to use
the Natural Family Planning in order to achieve, rather than avoid a
pregnancy, in order to increase the probability of fertilisation and
subsequent success. Nature allows wastage, it can be cruel, but as yet, we
have little power over it. NaProTechnology(5), which uses the science
from Natural Family Planning, aims to prevent early miscarriage with
hormone support and to maintain pregnancy to full term.
I was surprised at the out of date science used in this article. We
can only develop our bio-ethics in accord with the best science available
at any point in time, otherwise it would certainly, as in this case, be
reductio ad absurdum.
Dr A M H Williams
GP and Medical Advisor Fertility Care
Glasgow
p.s. I could also add that though many people may use NFP for pro-
life reasons, the overwhelming reason is to not separate the procreative
from the unitive functions of the sexual act, but that may take a bit
longer to explain.
Although the article highlights the reaction of practitioners in the
medical profession to whistleblowers, I would point out that the same
bullying, stigmatising, undermining of the person's credibility, by for
example 'mentalising' or subtle or overt bullying and collusion - happens
to users of health services who have experienced unethical actions and to
those who have come across unethical resear...
Although the article highlights the reaction of practitioners in the
medical profession to whistleblowers, I would point out that the same
bullying, stigmatising, undermining of the person's credibility, by for
example 'mentalising' or subtle or overt bullying and collusion - happens
to users of health services who have experienced unethical actions and to
those who have come across unethical research and attempted to get their
concerns addressed.
Complaints systems in the past have too often failed those who have
attempted to highlight wrong doing. A significant problem has been that
the person has been positioned in the disadvantaged position of 'patient'
or 'client' rather than 'whistleblower'. Recently there is a definite
change in the way some Trusts and medical organisations are responding to
concerns. My reservation lies in that so often though what action is taken
depends on the ethical stance of those individuals in key positions.
Certain groups have suffered disproportionately when atempting to
speak out, for example those with mental health problems, and women who
raise concerns involving male practitioners.
In the 1980s I was involved with the initial stages of setting up an
organisation called POPAN. (The Prevention of Professional Abuse Network).
It dealt then with offences by therapists against clients but has now been
extended to cover abuse by all health and social care professionals. It is
now funded partly by the DoH and grants. In the early days the two
therapists who set up the organisation were slated and accused of
generating a problem which hardly existed.Some therapists in the NHS and
in influential positions in private organisations denied there was a
significant problem instead of investigating and working together with
POPAN.Some of their members were condemned as scare mongers, amongs other
offensive labels. Yet without especailly the courage of the two women
therapists who set up the organisation with no funding at all,from a
private flat in Hampstead, much of the abuse by professionals would still
be covered up.
I salute all those who have the courage to speak out and who will not
be silenced. The consequences can be very painful. Let us hope the winds
of change will keep on blowing.
POPAN : http://www.popan.org.uk - includes speech by Liam Donaldson to conference. (Currently offline).
I have no personal connection to POPAN now but have worked
independantly on the same issues for many years).
I'd like to respond to the article by L Bowens you printed in 2006,
Vol. 32:355-56.
1. The rhythm method has been out of date for decades.
2. The rhythm method was not a form of contraceptive. It was based on
abstinence during fertile periods. (Admittedly its method for calculating
those was flawed, hence point 1). Nevertheless pregnancy does not result
from abstinence.
I'd like to respond to the article by L Bowens you printed in 2006,
Vol. 32:355-56.
1. The rhythm method has been out of date for decades.
2. The rhythm method was not a form of contraceptive. It was based on
abstinence during fertile periods. (Admittedly its method for calculating
those was flawed, hence point 1). Nevertheless pregnancy does not result
from abstinence.
3. Users of NFP only differentiate between fertile and infertile days.
There is nothing half way, such as less fertile days. Couples engaging in
sex during fertile days know to expect a pregnancy. Assumptions that they
hope for or expect embryonic death (by engaging in sex on so called less
fertile days surrounding high fertile days) are absurd.
4. The author does not differentiate between natural death and induced
death.
In response to your interesting article I would thank you for raising
the issue of potential breach of confidence in relation to the teaching
of ethics.
I think what is missing from your account, from my perspective, is the
concept of members of OUR society being in this together. It is not
simply an issue which should be debated in the rather 'them-patients' and
'us-practitioners' manne...
In response to your interesting article I would thank you for raising
the issue of potential breach of confidence in relation to the teaching
of ethics.
I think what is missing from your account, from my perspective, is the
concept of members of OUR society being in this together. It is not
simply an issue which should be debated in the rather 'them-patients' and
'us-practitioners' manner you have taken.
The way forward is to include all stakeholders - otherwise it becomes a
rather 'bullylike' situation whereby those with the most power - ie in
this case through access to information disclosed in trust by uninformed
people, can overide the interests or rights of others.
In a civilised society I believe all should be treated with equal respect
and this places a responsibility on ethicists, etc. to inform the
uninformed as part of their work. In this case those such as researchers,
clinicians, ethicists etc. - 'know the score' and can protect their own
interests and indeed that of those in their wider social circle, by
deciding what they will or will not disclose. Therefore, the suggestion
that information should be used without the prior consent of those in the
vulnerable position - is unethical.
Perhaps ethicists and others might also think of using other parts of the
media in addition to specialist journals, which are to a great extent
still exclusive, to publish articles like this so that they will reach a
wider audience. Or perhaps advertise the Journal more widely. That it is
likely to generate more complexity should not be a reason to avoid wider
inclusion.
Dear Editor,
K A Bramstedt maintains in its excellent article that, solely in the case of transplant between alive, would be acceptable which a transfusion contract was not signed if both, donor and receiver, are Witnesses of Jehovah.
Nevertheless, we considered that, even in those cases, the rejection to the transfusion must be used like exclusion criterion.
In this case the reason has to be...
Dear Editor,
MDD Bell (1) points out a number of serious ethical problems with "presumed consent" for organ donation in the UK Human Tissue Act 2004. One serious problem is that even in a system of voluntary organ donation, such as the one in the US, true informed consent is not given. Organ donor cards do not make it clear when claiming that the removal of organs takes place after the donor is dead, that the poten...
Dear Editor
The Olivieri symposium offers an opportunity to reflect on the Canadian regulatory climate and public governance. Baylis’ paper raises a concern about the Canadian bio-ethics community’s collective silence and stewardship regarding the Olivieri case.[1] A similar collective silence greeted the recent McDonald report [2] on research governance in Canada. The McDonald report assessed the integrity and e...
Dear Editor,
Potts (1) questions the validity of prospective consent to organ donation as recorded on the organ donor cards in current use in the USA. The situation is no better in this country. "Consent" as recorded on the NHS Organ Donor Register is based on nothing more than a ticked box on a form specifying organs to be taken after death. Such "consent" is surely invalid, being at the very least far from fu...
Dear Editor
As a bioethicist who works with and is a former board member of the Canadian Down syndrome Society (CDSS)I was thankful that Julian Savulesque noted the argument that "fetuses with Down's syndrome are 'devalued' and that this represents discrimination.
The perspective of the CDSS is that Down is a condition and not a disease. Persons with Down while different must be taken as equal members of so...
Dear Editor
Erin and Harris argue, as have others before them, for a regulated market in human organs. The rationale is the imbalance between a limited supply and growing demand for organs. Given that fact, and no others, it makes "sense" to create a market that might increase supply.
The assumption of those who have argued this is that there are neither risks nor dangers to donation and that the act of don...
Dear Editor,
This article ignores up to date knowledge of the physiology of reproduction in its fascination with a mathematical and statistical model and his illogical assumptions.
The ovum lives for 12-24 hours, and it can only be fertilised within this short time(1). Outwith the fertile time, the sperm cannot reach the ovum as the cervical mucus dries and forms a plug(2). The sperm can be kept waitin...
Dear Editor,
Although the article highlights the reaction of practitioners in the medical profession to whistleblowers, I would point out that the same bullying, stigmatising, undermining of the person's credibility, by for example 'mentalising' or subtle or overt bullying and collusion - happens to users of health services who have experienced unethical actions and to those who have come across unethical resear...
Dear Editor,
I'd like to respond to the article by L Bowens you printed in 2006, Vol. 32:355-56.
1. The rhythm method has been out of date for decades.
2. The rhythm method was not a form of contraceptive. It was based on abstinence during fertile periods. (Admittedly its method for calculating those was flawed, hence point 1). Nevertheless pregnancy does not result from abstinence.
3....
Dear Editor
In response to your interesting article I would thank you for raising the issue of potential breach of confidence in relation to the teaching of ethics.
I think what is missing from your account, from my perspective, is the concept of members of OUR society being in this together. It is not simply an issue which should be debated in the rather 'them-patients' and 'us-practitioners' manne...
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