It may be most convenient to respond to Dr Andreae’s points[1] in turn:
1. Unless the claim that a child should determine its own genetic characteristics before it is conceived or born is intended to be flippant, it is logically incoherent. Conception is a decision that only a prospective parent can make. The editorial argument is that denial of choice of sex contributes to preventable maternal...
It may be most convenient to respond to Dr Andreae’s points[1] in turn:
1. Unless the claim that a child should determine its own genetic characteristics before it is conceived or born is intended to be flippant, it is logically incoherent. Conception is a decision that only a prospective parent can make. The editorial argument is that denial of choice of sex contributes to preventable maternal mortality and morbidity, particularly in developing countries. None of Dr. Andreae’s concerns addresses the ethics of tolerating the estimated daily toll of 1400 women, an estimated 515,000 women each year, who die of pregnancy-related causes, over 99% of whom are in developing countries of the world.[2] Many deaths are due to pregnancies that come too soon, too late, too often, and too closely spaced in women’s reproductive lives due to pressure to deliver sons.
2. The second point acknowledges that women’s lives are currently held hostage to multiple pregnancies to produce sons. Opposition to legal reform to relieve this burden tolerates exploitation of women’s vulnerability to repressive laws and policies. Ethical analysis in countries committed to justice between women and men increasingly leads to repeal or amendment of laws that repress women’s choices, to mitigate historic attitudes that treat individual women’s reproductive capacities as subject to public manipulation.
3. Willingness, reflected in point 2, to maintain women as instruments of state reproductive policies, even for benign purposes, is itself sexist, exploiting existing inequalities that deny women control over their reproductive options. Where son preference prevails, it is increasingly recognized that daughters must also be valued, not least to provide sons with wives and mothers of their children.
4. Apart from the inherent unreliability of slippery slope arguments as a basis for ethical public policies, extension of the argument for sex selection after birth of a first child to race is pragmatically unwarranted. There is demonstrable maternal mortality and morbidity where sex selection is denied; there is no evidence of the same related to denial of selection for family balancing on other grounds. Policy indicates that women should not be abandoned to preventable deaths to relieve any imagined speculative or theoretical concerns.
References
(1) Andreas M. Deeply worried about your guest editorial [electronic response to Dickens BM; Can sex selection be ethically tolerated?] jmedethics.com 2003http://jme.bmjjournals.com/cgi/eletters/28/6/335#66
(2) World Health Organization, Maternal Mortality in 1995, Estimate developed by WHO, UNICEF, UNFPA (Geneva: WHO, 2001) 2, 42-7.
We thank Derek Narendra for his carefully considered response to our
recent article.[1] We are pleased that our work stimulated such a
thoughtful reply.
Narendra criticises our analysis on two major grounds. First, he
suggests that a survey such as ours cannot identify patients’ "considered
moral judgments," and therefore that the data are not valid for the
purpose we put them to. Second, he...
We thank Derek Narendra for his carefully considered response to our
recent article.[1] We are pleased that our work stimulated such a
thoughtful reply.
Narendra criticises our analysis on two major grounds. First, he
suggests that a survey such as ours cannot identify patients’ "considered
moral judgments," and therefore that the data are not valid for the
purpose we put them to. Second, he argues that, even if the data could
lead to valid empirical conclusions, it is not clear that these
conclusions should have any implications for normative theories of
bioethics.
As we articulated previously, the conceptual assumption behind our
empirical conclusions was that, "if patients value a dimension of care
highly, then problems in that dimension will increase the likelihood that
they will report negative overall evaluations of the hospital." Narendra
does not directly challenge this assumption, and he underestimates the
ability of patients’ reports to illuminate the patterns of value
structures that lie behind their first-order evaluations. Nevertheless,
he is right that no single study or method of analysis can fully capture
something so rich as "considered judgments." Our work is at best one
small piece of a puzzle by which investigators, using diverse
methodologies, might triangulate on patients’ deeply held views. Our
findings in isolation are less important than their consistency with those
obtained by other researchers using multiple different means.[2]
Narendra’s scepticism that patients’ views should have any
implications for normative bioethical theory raises a critical question
about the professional role of bioethicists: do they speak on behalf of
patients, of moral truth, or of some dynamic interplay between the two?
We favor the latter possibility, in which case we cannot understand how
ethicists might proceed in their work without listening to those they
claim to represent. It would be especially ironic if those who champion
respect for autonomy end up instructing patients, on the basis of first
principles, about how they ought to think or behave.
Contrary to Narendra’s interpretation, we did not link our empirical
findings to normative theory directly, by suggesting that providers are
morally obligated to act in ways that maximise patient satisfaction.
Rather, we argued that those things that substantially impact upon
evaluations of care are likely to be important (perhaps even morally
important) to patients, and should therefore be taken into account in
articulating normative models of health care relationships.
Finally, we do not see respect for persons and respect for autonomy
as independent and conflicting principles, but rather as closely related
and substantially overlapping sets of moral norms. In our view, respect
for persons has numerous dimensions in addition to the obligation to
respect autonomy. If so, and these dimensions are important to patients,
then they deserve greater conceptual and empirical attention than they
have heretofore received.
Differences aside, we agree with Narendra that "an exciting research
itinerary" at the interface of descriptive and normative ethics lies
ahead. We are flattered that, in his view, our work "takes us part of the
way down that path."
References
(1) Joffe S, Manocchia M, Weeks JC, Cleary PD. What do patients value
in their hospital care? An empirical perspective on autonomy centred
bioethics. J Med Ethics 2003;29(2):103-108.
(2) Schneider CE. The Practice of Autonomy. New York: Oxford
University Press; 1998.
Udo Schuklenk wants to denude all physicians of any jewelry,
clothing, or office accouterments that identify them as a member of a
religion, political party, or sexual orientation. (1) Why? Because some
wary patients will see these as barriers between themselves and their
physicians. In consequence, adolescent patients struggling with sexuality
or patients with drug problems may not trust their phy...
Udo Schuklenk wants to denude all physicians of any jewelry,
clothing, or office accouterments that identify them as a member of a
religion, political party, or sexual orientation. (1) Why? Because some
wary patients will see these as barriers between themselves and their
physicians. In consequence, adolescent patients struggling with sexuality
or patients with drug problems may not trust their physicians fully and
withhold information critical to their medical care. This argument is too
clever by half.
In the way he has constructed the argument, all Schuklenk needs to show is
that some patient somewhere is somehow discomfited by his or her
physician’s pro-gay lapel pin, Jewish yarmulke, or Christian cross hung
around the neck. Never mind that for many patients the display of
religious symbols elicits the openness and trust Schuklenk wants to see in
clinical relationships. Never mind that physicians who wear a cross or a
yamulke might also have been sexually confused adolescents or people know
firsthand the difficulties of drug use or an unwanted pregnancy. It
doesn’t matter to Schuklenk that self-identified Christian or Muslim
physicians hold a variety of views when it comes to contraceptives,
abortion, and sexual fidelity. All that matters are patient’s
perceptions, the facts notwithstanding. To be sure, physicians should not
pressure patients toward political and religious views, and any such
actions should be condemned as the unwarranted intrusions that they
are.(2)
But as far as Schuklenk is concerned, passive symbolism is no
less worrisome than active pressure on patients to adopt religious or
political views.
Patients will disclose the truth about their circumstances -- and come to
trust physicians -- if given a reason to do so. Physicians who emphasize
their commitment to patients and the confidentiality of their discussions
provide exactly those reasons, and this is true no matter whether their
clothing identifies them as a member of a religion or not.
References
1. Udo Schuklenk, Medical professionalism and ideological symbols in
doctors’ rooms. Journal of Medical Ethics 2006 (32): 1-2.
In his article ‘Deafness, culture and choice’, Neil Levy argues that
‘the deaf will always be cut off from the buzz of conversation, always
restricted to a narrower range of jobs, always slightly alienated from the
mainstream of political, social, and cultural life.’[1]
He argues that deaf
children will always be somewhat worse off than hearing children, because
‘We are, in many ways, a logocen...
In his article ‘Deafness, culture and choice’, Neil Levy argues that
‘the deaf will always be cut off from the buzz of conversation, always
restricted to a narrower range of jobs, always slightly alienated from the
mainstream of political, social, and cultural life.’[1]
He argues that deaf
children will always be somewhat worse off than hearing children, because
‘We are, in many ways, a logocentric culture – one which is centred around
the voice’.
We can interpret this claim of Levy’s in two ways. One interpretation is
that Levy is making a practical argument that this logocentricity is so
ingrained that we can predict with certainty that it will always remain
central to our culture, and that deaf children will remain worse off. The
other is that Levy is making the claim that our culture is necessarily,
irrevocably logocentric.
Let us consider the latter argument first. Can this really be Levy’s
claim? It is not so hard to imagine a world without speech. Try walking
through your day mentally, replacing spoken language with sign language.
Replace telephones with videophones, and imagine teletext subtitles on
television shows. Wave and smile at your co-workers instead of saying
hello. Not only is such a world thoroughly possible, it is not obvious
that we would be substantially worse off. Some might argue that migrating
to sign-language would disadvantage the blind. Yet in the USA, there are
fewer people who have trouble reading, than those who have trouble hearing
conversation.[2] As a whole, then, our society might be better off if we
migrated to sign. Of course, it would require an enormously difficult and
painful change to migrate a hearing majority to a silent system of
language, and it is this practical difficulty which probably ensures that
such a migration will never happen.
We must assume, therefore, that it is the practical argument which
Levy is making. If this is Levy’s goal, then he means to show us that for
contingent practical reasons such as the difficulty of migrating to sign
language, we can reasonably predict that deaf children will always be
constrained by their deafness. It seems to me that this reasoning, if
anything, supports the central claim of the Deaf – that their deafness is
a constraint only because our society discriminates against those who
cannot hear.
The Deaf are not proposing that we should replace spoken language
with sign language, of course. Neither are they arguing that their
children will not be disadvantaged by being deaf. They are asking that it
be recognised that they are effectively disabled by the hearing majority,
not by some difference in their physiology, and that this distinction
means that if deaf children are worse off than hearing ones, it is because
of society’s discrimination, not because of the actions of the deaf
parents. This argument is not vulnerable to practical arguments like
Levy’s. If we continually discriminate against deaf people when we build
our telephones and engage in our spoken cultural, political and social
customs, then it certainly is through our discriminatory actions that they
are worse off; this fact is not affected by the difficulties we may face
in ridding our culture of its discriminatory structure.
I have yet to see an argument which faces up to the claims of the
Deaf. It seems to me that to establish that the deaf are not discriminated
against, or that the discrimination is not wrongful, we would need to show
that people whose physiology differs from the mainstream have no right of
equal access to our cultural, social, and political life. Perhaps this can
be shown, but I doubt it.
Utilitarian arguments might establish that the discrimination against
deaf people is outweighed by the difficulties involved in migrating the
mainstream to a deaf-friendly society, but they will never establish on
their own that this discrimination does not exist. If it does exist, then
it seems to me that the deaf ought to be allowed their claim that their
disadvantage is the fault of the selfish hearing population, and it does
follow from this that they should be allowed to have their deaf children,
while lamenting that the hearing majority has built a world that limits
the future of their child. After all, we do allow parents from other
minority groups to knowingly have children who will, like them, suffer
from discrimination.
I would suggest that a successful argument against having deaf
children would need to involve the claim that deaf children are worse off
in ways which cannot be changed, no matter what. These will not be social
reasons. Examples might be that deaf children will find it harder to avoid
oncoming trains, or that they will never experience the pleasure of
listening to the singing of whales. These limitations, whilst much less
grievous than the discriminatory social limitations, cannot be changed,
and therefore cannot constitute discrimination. Of course, it may be that
these minor limitations do not present us with enough reason to prevent
deaf parents from having deaf children.
In either case, it is certainly not enough to merely prove, as Levy
does, that deaf children will be worse off than hearing children. Deaf
parents know this, as do the parents of female children, black children,
poor children, and children of religious minorities. If we wish to deny
deaf parents their right to have deaf children, we must either dispute
their claim that they are wrongfully discriminated against, or show that
they are worse off in some necessary, irreparable way.
References
(1) Levy N. Deafness, Culture, and Choice. J Med Ethics 2002;28:284-285
(2) McNeil J. Americans with disabilities: 1994-95. Current Population
Reports, US Census Bureau: Washington DC, 1997: P70-61
The comments of Marang and Kievit are interesting, but are they relevant?[1]
I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.
1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in cour...
The comments of Marang and Kievit are interesting, but are they relevant?[1]
I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.
1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in court against the defendant? The answer is no, since no one needs to provide evidence against him or herself.
2. Where can a judge then find the information he needs, if the defendant remains silent? The answer seems obvious. Both the patient and possibly the patient-organization may have collected data on the average complication frequency in the whole country or/and the specific hospital, where the defendant works. Let me give an example. A number of years ago the Dutch consumer organization, Consumentenbond, reported that some of its members, who were also patients, complained about the high incidence of complications occurring in the department of gynecology in a hospital in the Dutch town of Amersfoort. The medical director of the hospital threatened that he would sue the Consumentenbond if they would not withdraw their complaint. The Consumentenbond, however, did not retract its accusation and an Inspector of Health confirmed the negligence in the department of gynecology. This led to the resignation of the medical director and some of the gynecologists.
3. Are patients able to determine if a complication has occurred and if so if it is caused by an error or if it has occurred spontaneously? In my opinion this will always remain a difficult matter. But undoubtedly with further experience, the quality of the data, collected by the patient-organization, will improve. Here it should be emphasized, that even for the medically trained staff, it may be difficult to detect a complication and to establish its cause. Finally in malpractice cases the degree in which a complication is the result of an error is, I believe, best left to the judge to decide. He will, in general hear the evidence from specialists representing the plaintiff or the defendant. Occasionally the judge, himself selects a medical expert to help him to establish the cause of the complication.
Reference
(1) Marang PJ, Kievit J. Re: Patient organisations should also establish databanks on medical complications [electronic response to Gebhardt DOH; Patient organisations should also establish databanks on medical complications] jmedethics.com 2003http://jme.bmjjournals.com/cgi/eletters/29/2/115#49
I very much enjoyed Dr.Bishop paper and I agree on most points, I am
against euthanasia, and do believe that by legalising assisted dying we
place death in a 'metaphysics of efficiency', and that leaving death
'open' would be preferable.
To be sure, making it a law gives death a different status, one of a
medical 'option', and a certain legitimacy as being merely 'an option'.
However, ther...
I very much enjoyed Dr.Bishop paper and I agree on most points, I am
against euthanasia, and do believe that by legalising assisted dying we
place death in a 'metaphysics of efficiency', and that leaving death
'open' would be preferable.
To be sure, making it a law gives death a different status, one of a
medical 'option', and a certain legitimacy as being merely 'an option'.
However, there are already people who wanted to die and wanted physicians
to assist them in that death, prior to any current legal or medical
discourses, such as Lord Joffey's Bill in the UK. Whilst people views are
shaped by medicine, law and popular views of the time, people still have
autonomy. To certain extent we had already placed ourselves in the
metaphysics of efficiency, medicine didn't place us there. DNR, which
Dr.Bishop mentions is a good case point. Medicine may have appropriated
it, but patient groups asked for it. Whilst this does in no way
legitimatize such appropriation, medicine didn't ask for this option to
begin with. That a law might make more people consider death as an
'option' is likely and will enable such a metaphysical 'attitude' to be
all encompassing it was, however, there already.
Competing Interests: None
Reference
1. J P Bishop. Framing euthanasia. J Med Ethics 2006; 32:225-228.
In his response to our paper "A stronger policy of organ retrieval from cadaveric donors: some ethical considerations".[1] Professor Harris criticises our
position on
the matter of mandatory posthumous organ donation.[2]
Whilst some of his
comments are fair we believe others to be ill-judged. In this reply to
Harris we not
only defend our position but will raise a new argument to support our
conten...
In his response to our paper "A stronger policy of organ retrieval from cadaveric donors: some ethical considerations".[1] Professor Harris criticises our
position on
the matter of mandatory posthumous organ donation.[2]
Whilst some of his
comments are fair we believe others to be ill-judged. In this reply to
Harris we not
only defend our position but will raise a new argument to support our
contention that
organs should not be taken from the dead against their premortem wishes.
When this
further argument is taken into account, it will be seen that Harris'
proposal, although
perhaps intuitively attractive, does not stand up to scrutiny on either
moral or practical
grounds.
We will begin by conceding two points. First, Professor Harris states
that he is 'not
straightforwardly utilitarian' - we accept this and apologise for any
offence caused by
so describing him. Second, we also accept his criticism that the Internet
sources we
used may not have reflected accurately his views.
Having conceded the above points we now want to deal with Harris'
substantive
criticisms of our position.
1. There are precedents for insisting that the public make sacrifices Harris argues there are precedents for a policy of the sort he advocates,
accordingly he
cites examples of situations in which individuals are sometimes obliged to
make
sacrifices for the public good such as jury service and Coroner's post
mortem
examinations. In the former case he says, "They [the public] may be
called, and unless
excused by the court, must serve". [2] This is not quite true and so we
believe that this analogy fails: people may be fined or
imprisoned if they refuse to sit on a jury but they cannot be compelled to
sit.
Harris' other example, Coroner's PMs, is more powerful - it seems to
directly parallel
the situation under discussion. Harris says "The courts can order
examinations
without any consents being required and despite the fact that these
involve
interference with the dignity of a dead body and the removal of organs. Of
course post
mortems are not usually ordered out of simple curiosity, there are public
safety and
public policy considerations".[2] We wish to make three small points in
response.
The first is that Coroner's PMs are never solely in the public
interest. We accept
that public interest and the interests of future patients with the same
disease is part of
the reason why we seek the cause of death in unusual cases, but it is by
no means the
only reason. Coroner's PMs are often done in cases where foul play or
medical
negligence are suspected - in these circumstances the examination is not
done only for the
public (although the public obviously benefit if a murderer is caught) but
for the dead
person - so that action may be taken against the person who harmed him,
just as it
would be against someone who harmed a still-living person. Post-mortems
for teaching purposes could, perhaps, be said to be purely for the public
good but Coroners' PMs are, we contend, always conducted at least
partially on behalf of the deceased and his or her family.
The second point is that Coroner's post mortems are relatively rare:
hospital post mortems,
which the premortem patient or his relatives are free to refuse, are much
more
common. While the public may not object to having no right to refuse if
they think
that Coroner's PMs happen only rarely (or, as is also possibly the case,
while there is
no public outcry because it is not common knowledge that there is no right
to refuse
this sort of PM) Harris' proposal would involve a widespread use of the
dead and so
would be more likely to provoke public displeasure and so run counter to
the public good.
Thirdly, Coroners' PMs and organ removal for transplantation are not
analogous as, barring those notorious cases a few years ago, all organs
are returned to the
body for burial or cremation following a post mortem: although we do not
deny that
some relatives may well feel repugnance at the idea of the organs being
even
temporarily removed we imagine that some of this will be assuaged by their
return -
this obviously cannot happen in the case of organs removed for transplant.
So we would argue that the cases Harris offers are not wholly
comparable to
mandatory posthumous organ excision and so do not set a precedent for his
proposal. We also assert that there are many circumstances in which
individuals are not compelled to subsume their welfare (or even something
more trivial such as their wealth) for the sake of others. More on this in
section five.
2. Surviving Interests
Harris says "Hamer and Rivlin have spent the main part of their paper
articulating a
conception of posthumous interests that I (and many others) have also
articulated and
in establishing a point that I concede but, which I have argued has scant
moral force
when set against the harm that overriding such interests might prevent".[2] Yet it
seems to us that Harris does not share the view which we set out in our
original paper.
There we argued that the ‘antemortem person’ is harmed if his or her
'surviving
interests' are thwarted. In ‘Wonderwoman and Superman: The Ethics of Human
Biotechnology’ Harris says, “while…persisting interests may be damaged,
the person
whose interests they are cannot be harmed once they are dead”. [3] (our
italics).
Harris says that, during life, “you can harm (or benefit of course)
both the individual
and her interests. Once she is dead only her interests remain to be
harmed”. [3] But it
seems very odd to talk of interests as being ‘harmed’ without referring
back to an
interest-holder (the antemortem person we referred to in our original
paper).
‘Persisting interests’ under Harris’ system, seem like strange entities
indeed and it is
small wonder Harris thinks they are so easily brushed aside and should be
respected
"out of courtesy so to speak". [2] The surviving interests of the dead, on
our account,
carry greater weight than Harris gives them credit for. It is, of course,
open to Harris to say that by 'posthumous interests' he meant only a
person's plans, projects and the like. However, in that case, we contend
that the conception of posthumous interests which we set out in our
original paper was not one to which Harris subscribes.
3. Harris claims that the harms to the dead are 'trivial'. We strongly disagree with Harris here. One way that the dead can be harmed
is by
thwarting their life's wishes and values and doing this is, we claim, far
from trivial.
Throughout this debate both Harris and ourselves have made use of the case
of a
person with religious beliefs which prohibit organ donation without going
into any
further detail. Perhaps a concrete example from one religion, Judaism,
might make it
clear just what such people stand to lose.
According to Halakhah (Jewish law) the dead must be buried whole
unless an organ is
to be used immediately to save another person's life. The reason behind
this is
Pikku'ah Nefesh, i.e. the overriding duty of saving a life. Rabinovitch
writes, "Jewish
law is very strict in its probation of:
a) mutilating the lifeless body;
b) deriving any use or benefit from a cadaver and;
c) delaying the internment of any part of a
corpse ...
However, it is clear that where there is an immediate possibility of
saving a life, the
commandment to save life makes it not only permissible but even obligatory
to
suspend all prohibitions.[4] This would permit (even require) organ
donation under
some circumstances, the donation of a liver for instance to someone with
only hours
to live, but would not permit the donation of kidneys, organs for which
there are
adequate replacement therapy. For a religious Jew therefore, the removal
of his
kidneys would break halakhic law and would not be in the least trivial.
Even if we concede that such interests cannot 'trump' the interests
of the living this is
not the end of the matter.
4. A brief aside about how to compare harms
Professor Harris makes much of our throwaway comment about how difficult
it is to
compare such different harms as thwarted surviving interests and dying for
lack of an
organ. However, we wonder whether he has missed our point somewhat. He
says “we
do this [make such a comparison] in medicine everyday. We compare the
harms of
surgery (scarring, pain, the risks of anaesthesia etc.) with the gains
from the surgery; or
we compare the harms of chemotherapy with the expected gains in terms of
remission…What would we say of a medical team that lamely pleaded, “we are
at a
loss to know how to make this calculation?” [2]
We would agree wholeheartedly that such comparisons can be made when
the harms
and benefits all come to a single person. However, we contend, such a
decision is
difficult to make when the person suffering the harm is not the same
person who reaps
the benefit. To use an example from one of the authors' (Hamer) everyday
work; when a living person wishes to donate a kidney to a loved one, they,
the potential recipient, their families and the medical team engage in a
protracted and difficult debate about whether the donation should go
ahead. Comparing mortality and morbidity risks, possible financial
problems, family tension etc to the benefit of no longer needing to
dialyse is very difficult when the person undergoing the harm is not the
person who will reap the reward. It is hard to quantify the good of being
free from dialysis, and, even if it were quantifiable, it is a further
task to compare that to the harm of having a large scar, possible post
operative complications, a somewhat increased risk of hypertension and so
on - there simply doesn't seem to be any scale on which such differing
things can be weighed and arranged. If it is difficult when the donor
has freely consented to give an organ, how much more complicated would it
be when the donation is not voluntary?
Finally, we also contend, as stated in our earlier paper, it is
simply not appropriate to compare the harms to the donor and to the
thwarted recipient in the way Harris proposes for the following reason -
that we, ordinary citizens, are not compelled to do 'everything we can'
for those with failing organs.
5. The 'duty to rescue'
In the final section of his response, Professor Harris turns his attention
to our assertion
that the plight of those in need of organs does not entitle doctors to
take organs
against the pre-mortem wishes of the dead. Harris says "I have to say that
someone
who does not see that the remediable suffering of others creates
obligations is simply
not a moral agent". [2] Our position does not entail this.
The question to be addressed here is where to draw the line in our
duty to help. We,
and probably a great many other people, would agree with Harris that,
faced with the
situation of the Samaritan in the parable, we should act, and act
immediately. We
may even agree that those who fail to act in this situation should receive
judicial
punishment (see the ‘bad Samaritan’ laws enacted in some European
countries). In
these clear cut cases, where rescue is easy and we are the only ones who
can help,
suffering does (often) engender an immediate duty to help.
We would also agree that help should always be forthcoming from those
who, by the
role they have adopted in society, have a special obligation towards those
in need.
For example, we would usually consider a doctor who refused to help an end
-stage
organ disease patient placed in his care to have failed in his duty to
that patient.
Again, we may consider legal action an appropriate recourse against such a
failure.
However, not all cases of suffering are like this. A great many
people, perhaps most,
feel compelled to provide some help to those in need whose plight is less
immediately
presented than in the case of the Samaritan. Images on television and in
the
newspapers move us to render assistance to those starving in other
countries, by
giving money to aid charities and suchlike. But the obligations generated
in this sort
of case, where the problem is more ‘chronic’, and where we are not
uniquely placed
to assist, are those of charity not justice. We may think it regrettable
if people choose
not to give, or not to help, but this does not give us licence to take
from them by force.
Even among those who give to charity, very few people give so much as to
seriously
alter their lifestyle, even though they know that lives could be saved
with the money.
Yet most people (with the possible exception of Harris and similarly-
minded thinkers)
do not believe that the government (or other agency) is entitled to
forcibly appropriate
our spare cash, even to achieve the laudable aim of saving more lives. We
believe
that the case of patients dying for lack of transplants falls into this
second category. It
may be a shame if someone does not wish to donate their organs but at
worst they are
guilty of a failure to give charity. This brings us to our last point.
6. The ‘Donkey Sanctuary’ Argument
We mentioned in the introduction that we have an additional argument
against Harris’
proposed policy of enforced organ donation. It is this. If Harris wishes
us to ignore the
wishes of the dead in the interests of saving people who are alive, then
it seems that
he is committed to saying that any will in which a bequest is made to
causes other
than that of saving human lives must also be changed and the deceased's
wishes
ignored. If a person left money to for instance the Donkey Sanctuary, the
Battersea
Dogs Home, the Cats Protection League or the Scottish Railway Preservation
Society,
the beneficiary would have to be changed to a charity such as Oxfam or the
NSPCC.
On further reflection we think Harris must go even further. It seems to us
that he
would have to agree that nobody would be permitted to leave any money to
anyone [2]
unless that money was going to be used to save lives. This is as absurd as
it is
unworkable.
It would of course be nonsensical to bring in such laws, but it seems to
us that if
Harris wants to bring in a law that would enable people’s wishes to be
changed to
enable organs to be forcibly removed, he would also be committed to bring
in
legislation to forcibly change any will.
Harris has a response to this point: in a conversation with one of the
authors (Hamer)
he pointed out that there is a precedent for appropriating at least a
portion of dead
people's estates, i.e. death duties. To the response that death duties
take only a
proportion of an estate (in the UK this presently stands at 40% of an
estate above a
tax-free threshold of £255,000), he replied that the organs retrieved
under his scheme
form less than 40% of the total body. But our bodies are not like our estate: they are us, not simply our
belongings. In
many cultures to desecrate a corpse is considered at least as bad a crime
as stealing
from a person's estate. One has only to think of the abhorrence when it
was
discovered a few weeks ago that a Muslim woman’s body was defiled in a
hospital
mortuary.
Secondly, death duties do not apply to all of one's estate, in fact, as
they only apply to
the portion of the estate above a tax-free threshold, in many cases they
do not apply at
all. Even above this threshold, there are ways of avoiding or mitigating
the tax.[2]
However, Harris' proposal would apply to all suitable dead bodies, and
with no get out
clause: this is the source of our objections. Moreover, what Harris
appears not to
have taken account of is that it is the whole of a person’s wish that is
being ignored,
therefore, for him, to talk of percentages in this context makes no sense.
To conclude, to a great extent we agree with Harris that there is a good
case for a
stronger policy of organ retrieval. However, for the reasons given above
we have
shown that not only does Harris require too much by insisting that organ
excision be
mandatory but that his proposal has serious flaws.
Acknowledgement
We would like to thank Professor John Harris for his discussions with the
authors and
his suggestions concerning a draft of this paper. We would also like to
thank Dr Mark
Nelson, School of Philosophy, University of Leeds and to the anonymous
reviewer for their helpful comments.
.
References
(1) Hamer CL, Rivlin MM. A stronger policy of organ retrieval from
cadaveric
donors: some ethical considerations. J Med Ethics 2003; 29:196-200.
(2) Harris J. Organ procurement: dead interests, living needs. J Med
Ethics; 2003;
29:130-4.
(3) Harris J. Wonderwoman and Superman: The Ethics of Human Biotechnology.
Oxford: Oxford University Press, 1992:100.
(4) Rabinovitch, NL. What is the Halakhah for organ transplants? In:
Carmell A,
Domb C, eds. Challenge. Torah views on science and its problem. Jerusalem:
Fieldham Publishers, 1978:482-90.
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.
Dear Editor
It may be most convenient to respond to Dr Andreae’s points[1] in turn:
1. Unless the claim that a child should determine its own genetic characteristics before it is conceived or born is intended to be flippant, it is logically incoherent. Conception is a decision that only a prospective parent can make. The editorial argument is that denial of choice of sex contributes to preventable maternal...
Dear Editor
We thank Derek Narendra for his carefully considered response to our recent article.[1] We are pleased that our work stimulated such a thoughtful reply.
Narendra criticises our analysis on two major grounds. First, he suggests that a survey such as ours cannot identify patients’ "considered moral judgments," and therefore that the data are not valid for the purpose we put them to. Second, he...
Dear Editor,
Udo Schuklenk wants to denude all physicians of any jewelry, clothing, or office accouterments that identify them as a member of a religion, political party, or sexual orientation. (1) Why? Because some wary patients will see these as barriers between themselves and their physicians. In consequence, adolescent patients struggling with sexuality or patients with drug problems may not trust their phy...
Dear Editor
In his article ‘Deafness, culture and choice’, Neil Levy argues that ‘the deaf will always be cut off from the buzz of conversation, always restricted to a narrower range of jobs, always slightly alienated from the mainstream of political, social, and cultural life.’[1]
He argues that deaf children will always be somewhat worse off than hearing children, because ‘We are, in many ways, a logocen...
Dear Editor
The comments of Marang and Kievit are interesting, but are they relevant?[1]
I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.
1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in cour...
Dear Editor,
I very much enjoyed Dr.Bishop paper and I agree on most points, I am against euthanasia, and do believe that by legalising assisted dying we place death in a 'metaphysics of efficiency', and that leaving death 'open' would be preferable.
To be sure, making it a law gives death a different status, one of a medical 'option', and a certain legitimacy as being merely 'an option'. However, ther...
Dear Editor
In his response to our paper "A stronger policy of organ retrieval from cadaveric donors: some ethical considerations".[1] Professor Harris criticises our position on the matter of mandatory posthumous organ donation.[2]
Whilst some of his comments are fair we believe others to be ill-judged. In this reply to Harris we not only defend our position but will raise a new argument to support our conten...
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...
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