The Queen of Hearts she made some tarts all on a summer's day;
The Knave of Hearts he stole the tarts and took them clean away.
The King of Hearts called for the tarts and beat the Knave full sore;
The Knave of Hearts brought back the tarts and vowed he'd steal no more.
The Queen of Hearts she made some tarts all on a summer's day;
The Knave of Hearts he stole the tarts and took them clean away.
The King of Hearts called for the tarts and beat the Knave full sore;
The Knave of Hearts brought back the tarts and vowed he'd steal no more.
Nursery Rhyme (traditional)
"Off with their heads" - the Queen of Hearts, Alice in Wonderland
(chapter 8)
Lewis Carroll's jabberwocky-laden satire on justice in Victorian
society refashions the cozily domestic tart-baking Queen of Hearts into a
ruthless and stupid ruler who responds to every annoyance with the
command: "Off with their heads!". The queen is stymied, however, when she
orders the beheading of the Cheshire cat who magically appears and
disappears as a large head with a grinning face. The royal executioner
refuses an impossible order. The king says that anything with a head can
be beheaded. The executioner insists that beheading requires the subject
to have a body. While they argue it out the Cheshire cat slips away. At
least Lewis Carroll was mindful of Kant's categorical imperative
concerning the ontological status of the body as an integrated assemblage
of unalienable parts!
The original Queen of Hearts, however, was the Biblical Judith, an
exemplary Old Testament figure, who was praised for her courage and faith
in defending the Israelites against a conquering army sent by the Assyrian
king, Nebuchadnezzar. Judith's image was memorialized as the 'Queen of
Hearts' on French playing cards appearing in the early 17th century. So,
like Princess Diana, who preferred to be her country's 'Queen of Hearts'
than the Queen of England, I am content to be satirized by Taylor as a
Queen of Hearts in defending the body against rogue markets.
In the following response I will treat each of Taylor's objections of
my anti-organs market arguments.
1. An Assumed Right to Buy
Taylor argues that I mischaracterize pro-market positions and the
medical and economic realities underlying organs markets. But the reverse
is the case. Taylor mischaracterizes my arguments which are not with moral
philosophers and academic bio-ethicists,(except when asked to review their
books!) or when drafted into a debate (like this one). While I read what
moral philosophers and bioethicists and economists have to say about
markets in bodies, my arguments are not with or about them, but with the
organs brokers, kidney buyers, medical insurance companies and rogue
surgeons involved in illegal transplants with organs procured through
unregulated black markets. My arguments are also with Ministries of
Health, medical credentialing boards, international transplant societies
and policing institutions that have generally failed to interrupt,
correct, disbar, and/or prosecute those involved in breaking existing laws
as well as international regulations.
Moral philosophers argue from a disciplined obedience to reason,
anthropologists argue from empirical observations of social life as
lived in the real life contexts under study. I have argued that a
'right to buy' and 'right to [quality of] life' perspective fuels illicit
transplant transactions on the ground. Hundreds of participants in
'transplant tourism' -- buyers, surgeons, brokers and others -- actively
defend in taped and in videotaped interviews, a 'right to life' and a
'right to buy' perspective. More recently, I have argued that these
consumer and market-oriented principles have begun to affect altruistic
living donation as old patients grandparents are asking for kidneys from
adult children and grandchildren. In March 2007 at Mass General Hospital
in Boston I encountered a 64 year old hospital volunteer whose 87 year
old mother had asked for a kidney. The mother was shocked at her
daughter's gentle refusal and she chided her: "Isn't this what any sick
parent can expect from her own child?"
Taylor may not have used a right to buy principle in his work, but a
great many pro-market scholars and bioethicists, including Janet Radcliffe
-Richards , Abdullah Daar , and Arthur Matas have defend a 'right to
buy and to sell organs' based on principle of individual liberty and
autonomy. Some, like Daar, also argue from a principle of life-saving.
Daar has said that banning kidney sales is tantamount to issuing a death
sentence against patients suffering from end stage kidney disease. The
late Michael Friedlander, a transplant nephrologists at Hebrew University
in Jerusalem, announced that over time he had gradually come to accept "
a right to buy and sell a kidney".
Of course there are divided opinions on this among proponents of
organs markets. But while Taylor accuses me of misrepresenting his own
views with respect to an "assumed right to buy" [an organ], in my review
of his book, Stakes and Kidneys, I write that " while defending the
individual's right to sell, neither author [Taylor and Mark Cherry]
articulates the individual's 'right to purchase life' in the form of a
kidney (or another organ) from a stranger." By not dealing with this
ethical principle (so often articulated by those involved in kidney
markets) a 'right to buy' might function implicitly in their arguments.
2. Are transplant organs luxury goods?
My research in a dozen countries, with varying levels of regulation and of
institutional capacity to monitor the harvesting and distribution of
organs, has led me to conclude that in many global contexts organs
waiting lists are frightfully flawed, lack transparency, and are filled
with error. Even in the United States with its generally excellent
organization under UNOS, initial reviews of the data on the official
waiting list
show redundancies ( as some enterprising patients double and triple list
in different regions of the country), include many 'inactive' patients,
and in the absence of the application of older medical ethical principles
such as futility, the fastest growing population group on the US waiting
list are people over 70 years old, many with complicating medical
conditions that should render them ineligible for transplant. There is a
glaring need for independent review and surveillance of the UNOS waiting
list.
Data from interviews with transplant tourist patients, their doctors,
and brokers as well as observations of the shifting locations for
transplant tours indicate that organs buyers demand quality 'products'
and they are willing to pay more for 'fresher' and 'healthier' kidneys.
Kidney buyers demand personal, ethnic, medical, and social profiles of
their suppliers so they can select the 'best quality' organ. If Stacy
refuses to believe my reports, he can search the Internet under, for one
example: http://www.liver4you.org/ an international organs brokerage
firm that promises quality products , from both live and caderveric
donors, at market prices. Until I complained, the group used to
advertise even more crudely: "Want to wait years for a cadaver organ
or buy a fresh one from a living donor in just two weeks?"
I have absolutely never said or implied that there is no need for
transplant. In referring to an 'invented' or 'artificial' scarcity I am
using the language of deconstruction to suggest that medical needs and
waiting lists are socially as well as medically produced.
3. Concentration camps and invisible sacrifice.
I have argued, based on empirical work in forensic institutes,
hospitals, and police mortuaries in several countries, but that
especially under authoritarian and police state, the dead bodies of the
shantytown poor, township residents, the body of the enemy and the
mentally deficient, have been used as non-consenting organs and tissue
donors.
Implicit laws of 'presumed consent' based on longstanding and
widespread practices of using the 'unidentified' bodies of presumed to be
unclaimed paupers, obtain in many medical-legal institutes and police
morgues in the first and the third world.
I never equate these deviant or at best semi-legal practices in
public morgues with organized, normative and transparent policies of
presumed consent (opting out) as exist in central Europe and as was
attempted ( in good faith) in Brazil in 1997 and as Argentina has just
implemented. Rather, I have argued in many articles (uncited by Taylor)
that presumed consent would be the best possible solution to the need for
transplanatable organs, but that nations (like the US) with vast racial,
class and ethnic divisions, and in the absence of a national health
care system is not in a good position to ask for social solidarity nor to
demand generosity at death from bodies of the medically uninsured who were
not cared for while they were alive.
More recently, I have examined bio-piracy in global tissue
trafficking including the involvement of funeral parlors and ad hoc
tissue banks in New York City and New Jersey that lead to police
investigations and arrests.
4. The Trade in Living Organs
Taylor makes the leap from my discussions of tissues harvesting
from the dead to living, voluntary sale of organs. As these cannot be
subsumed under the same heading, I have supplied one. I have only one
question: What is Taylor evidence for the blanket assertion that
"voluntary trades in human organs that take place between consenting
adults, untainted by force or fraud, make all parties to them better off".
Where are the empirical studies to support his claim? It is, I fear, the
philosopher's speculation that in the best of all possible worlds this
would or could possibly be the case.
To date, however,all empirical studies of living kidney donors
indicate varying degrees of coercion, deception, feelings of exploitation,
shame, and resentment following arranged kidney sales. In addition to my
research are studies conducted by Lawrence Cohen , Sheila and David
Rothman , Goyal, Schneiderman and Sehgal and Zargooshi There are also
as yet unpublished doctoral dissertations by medical anthropologists
working in Iran, Turkey, Eqypt, and the Philippines with similar
findings. While selling a kidney means different things and has
different medical, social, and psychological consequences, depending on
many factors ( including access to medical after care, attitudes toward
the body, religious and cultural beliefs about gifting, sales, and
reciprocity, living and work conditions, and so on) thus far the data show
negative consequences. Most kidney sellers report lower wages and
decreased income in the first years after the sale. Since the sale of one
kidney per family is never enough, the temptation is strong in many areas
where kidney selling has almost become routine ( as in Manila) for
families to pass along the role of kidney seller from father to his sons.
Would regulation of black markets in organs solve matters?
The only test case we have to draw on is Iran. Iran's government
regulated system of kidney sales for transplant surgeries is highly
contested within the Iranian medical profession. Internal medical critics
of the system say that easy access to the bodies of poor people has
prevented the development of a deceased donor system in Iran and has
eroded living kidney donation among loving family members. They report
that kidney sellers are often treated, like deceased donors, as anonymous
suppliers of medical material. There is in Iran today no medical registry
of paid donors and no medical accountability, mandatory reporting of
mishaps, or seller follow up. Regulation in Iran has not ended the
black market, it has simply made it an official policy. Living donors are
still recruited by middlemen and payments are negotiated behind the
scenes. More affluent transplant patients demand healthier, better-off
donors, and are willing to pay an additional price for a 'higher quality'
kidney. While regulation is generally preferable to an underground black
market, it is contradictory for governments and Ministries of Health
to weaken one previously healthy segment of the population in the
interest of a sicker and wealthier section.
5. Scheper-Hughes's Anti-Market Arguments
I have never used the word 'repulsive' or any word resembling
'repulsive' with respect to markets in kidneys. I have used the
adjectives: exploitative, unfair, unjust, and unsafe for buyers and
sellers because that is what I have been able to see and hear and
document in the field and on the ground. Anthropologists are inclined
to think like the Greek philosopher (was it Tertullian? )who said:
"Nothing that is human disgusts me".
References:
Scheper-Hughes, N. The Tyranny of the Gift: Sacrificial Violence in
Living Donor Transplant. American Journal of Transplant 2007; 7:1-5.
Radcliife-Richards, J. Commentary. An ethical market in human
organs.
J Med Ethics. 2003 Jun;29(3):139-40; Radcliffe- Richards J, Daar AS,
Guttmann RD, Hoffenberg R, Kennedy I, Lock M, Sells RA, Tilney N. The case
for allowing kidney sales. International Forum for Transplant Ethics.
The Lancet. 1998 Jun 27;351(9120):1950-1952.
Daar AS . Money and organ procurement: narratives from the real
world. In: Theo Gutmann, AS Daar, R Sells, W Land ( eds). Ethical, Legal
and Social Issues in Organ Transplantation. Munich: Pabs Publishers, in
press.
Matas, Arthur J . The Case for Living Kidney Sales: Rationale,
Objections and Concerns. American Journal of Transplantation. 2004
4(12):2007-2017, December 2004 ; Matas, Arthur J. Schnitzler, Mark .
Payment for Living Donor (Vendor) Kidneys: A Cost-Effectiveness Analysis.
American Journal of Transplantation 2004 4(2):216-221, February.
Friedlaender, Michael. "The Right to Sell or Buy a Kidney: Are we
failing Our patients?" The Lancet vol. 359, March 16, 2002.
Scheper-Hughes, Nancy. 2005. Book Review: "The Ultimate Commodity".
The Lancet 366: 1349-1350, October 15.
Scheper-Hughes, N. Alistair Cooke's Bones: A Morality Tale.
Anthropology Today 22(6) December: 3-8; Scheper-Hughes, N. Biopiracy and
the Global Quest for Human Organs. NACLA: Report on the Americas 2006
39(5)/ March-April.
Scheper-Hughes, N. "Organs Trafficking: the Real, the Unreal and the
Uncanny. Annals of Transplantation 2006 11(3): 16-30. Publication of
the Polish, Czech, and the Hungarian Transplantation Societies. Editor:
W.A. Rowinski; Scheper-Hughes, N. "Consuming Difference: Post-Human
Ethics, Global (in) Justice, and the Transplant Trade in Organs", in Keith
Wailoo, Julie Livingston, and Peter Guarnaccia, eds. A Death Retold:
Jessica Santillan, the Bungled Transplant, and Pardoxes of Medical
Citizenship, 2006: 205-234. Chapel Hill: University of North Carolina
Press; Scheper-Hughes, N. 2006 "Kidney Kin: Inside the Transatlantic
Kidney Trade". Harvard International Review (winter):62-65.
Cohen L. Where it hurts: Indian material for an ethics of organ
transplantation. Daedalus 1999; 128: 135-165.
S.M. Rothman and D.J. Rothman. The Hidden Cost of Organ Sale.
American Journal of Transplantation, 6(7); 1524-1529.
Goyal M, Mehta RL, Schneiderman LJ, Sehgal AR. Economic and health
consequences of selling a kidney in India. J AmMed Assoc 2002; 288: 1589-
1593.
Zargooshi J. Quality of life of Iranian kidney "donors". J Urol 2001
166: 1790-1799.
Nancy Scheper-Hughes
Vera N. Schuyler Institute Fellow
RADCLIFFE INSTITUTE FOR ADVANCED STUDY
Harvard University
34 Concord Avenue
Cambridge, MA 02138
Professor of Medical Anthropology
and
Director Organs Watch
Department of Anthropology
232 Kroeber Hall
University of California
Berkeley, California 94720
David Bohm (physicist) wrote several books which resonate with the
concerns raised about problems inherent in discussions about ethical
issues. His emphasis was similar to that of Kenneth Boyd - the
importance
of open ended dialogue rather than discussions imposed by an agenda.
David
Bohm taught how this leads to deeper levels of meaning and the
possibility
of coming to better solutions than those impo...
David Bohm (physicist) wrote several books which resonate with the
concerns raised about problems inherent in discussions about ethical
issues. His emphasis was similar to that of Kenneth Boyd - the
importance
of open ended dialogue rather than discussions imposed by an agenda.
David
Bohm taught how this leads to deeper levels of meaning and the
possibility
of coming to better solutions than those imposed by holding onto
positions
or those skewed by conflict in discussion. The emphasis is on
collaboration which can be achievd with goodwill, practice and teachable
skills. One drawback is in that only relatively small groups in society
have access to courses where these skills can be learned, and even fewer
sit on committees etc where decisions are made. This in itself could be
seen to be unethical, that those few in positions of influence may
impose
important restrictions and conditions on the majority. It is also the
case that at times, some of those who sit on committees and who are
constantly included in formal debates which lead to the formation of
ethical guidelines, hold personal opinions which do not necessarily
reflect the wishes of society. Ethics do not only change with changes
in
society but are also involved with shifting degrees of power. For
example
between religion, the state and women's power over issues such as
termination of pregnacy. Surely it would be healthier to widen the
inclusion of people in debates which take place through ethics journals
Machado and colleagues rightly argue that the concept of brain death
evolved independently of any social interests(1). However, they ignore the
fact that its social reception has indeed depended, and continues to
depend, on such interests.
The concept of brain death was canonised soon after the publication
of the report of the Harvard Committee in 1968(2). The committee, on which
two trans...
Machado and colleagues rightly argue that the concept of brain death
evolved independently of any social interests(1). However, they ignore the
fact that its social reception has indeed depended, and continues to
depend, on such interests.
The concept of brain death was canonised soon after the publication
of the report of the Harvard Committee in 1968(2). The committee, on which
two transplant surgeons sat, made no serious attempt to justify its
concept. For example, it made no reference to any neurological
research(3). That said, the opening remarks of its report were very clear
about the interests underlying its endorsement of the concept — meeting
the increasing demand for organ transplants (particularly hearts), and
containing the financial crisis in intensive-care following the
introduction of the ventilator. This point was later on made even more
explicit by the creator of the committee himself, the famous Dr. Henry
Beecher(4).
The concept of brain death is currently in no danger, but the
definition of death as cardiac arrest seems to be making an ironical
comeback, albeit through the back door. The Washington Post recently
reported that doctors are increasingly declaring patients dead within
minutes after their heart stops beating and without any evidence of brain
death, so that surgeons could remove their organs(5). The great
seventeenth century British philosopher Thomas Hobbes was apparently
right: we tailor our philosophy according to our interests, not the other
way around(6).
References:
1. Machado et al. The concept of brain death did not evolve to benefit
organ transplants. J Med Ethics 2007;33:197-200.
2. Report of the Ad Hoc Committee of the Harvard Medical School to
examine the definition of brain death. A definition of irreversible coma.
JAMA 1968;205:337-40.
3. Jonsen, A. R. The Birth of Bioethics. Oxford: Oxford University
Press. 1998: 238-244.
4. Beecher, H. Scarce resources and medical advancement: ethical
aspects of experimentation with human subjects. Daedalus 98. 1969;2:275-
313.
5. Stein, R. New trend in organ donation raises questions. Washington
Post
18 March, 2007: A03. Available at http://www.washingtonpost.com/wp-
dyn/content/article/2007/03/17/AR2007031700963_pf.html. Accessed 16 April,
2007.
6. Hobbes, T. 1996 [1651]. Leviathan. Oxford: Oxford University
Press. I.11.21
As Machado and colleagues point out(1), the idea that death of the
brain, while the body remains alive, might be considered the death of the
person did, indeed, develop in isolation from the practice of organ
transplantation. But there was no attempt to define brain death and
establish formal clinical testing for its diagnosis as a basis for the
certification of death(2,3) until that became necessary f...
As Machado and colleagues point out(1), the idea that death of the
brain, while the body remains alive, might be considered the death of the
person did, indeed, develop in isolation from the practice of organ
transplantation. But there was no attempt to define brain death and
establish formal clinical testing for its diagnosis as a basis for the
certification of death(2,3) until that became necessary for the legal
practice of human cardiac transplantation in 1967.
The concept remains the subject of vigorous philosophical debate(4).
The simplistic UK concept - irreversible loss of the capacity for
consciousness and spontaneous breathing alone - has never been universally
accepted. The purely bedside tests which are supposed to diagnose that
state are clearly inadequate for the purpose and are currently under yet
further review by a Working Group of the Academy of Medical Royal
Colleges(5) which was set up in 2004.
References:
1. Machado et al. The concept of brain death did not evolve to
benefit organ transplants.
J Med Ethics 2007;33:197-200
2. Report of the Ad Hoc Committee of the Harvard Medical School to
examine the definition of brain death. A definition of irreversible coma.
JAMA 1968;205:337-40
3. Conference of Medical Royal Colleges and their Faculties in the
UK. Diagnosis of brain death.
BMJ 1976 (2):1187-88
4. Finis Vitae - is Brain Death Still Life?
National Research Council of Italy. Ed. de Mattei R. Rubbettino
Editore,2006
5. Simpson P. Working Group on brain stem death.
Academy of Medical Royal Colleges,UK
Rennie and colleagues are to be welcomed for using the age of circumcision
as an ethical vantage point rather than looking at the science behind
circumcision as prophylaxis for the HIV infection. While recognising that the
authors have merely set up points for discussion rather than dogmatic
conclusions, the outcome of their approach is strongly dependent on the input
data. I would like to reexamine their work from the perspective of a charity
set up to represent the interests of patients who feel harmed by
circumcision.
Consent
Rennie and colleagues find assent “vexing”. They state that
“the older the child is, the more appropriate it seems to seek
his agreement. This is embodied in current BMA Guidance on male circumcision
which states “The BMA cannot envisage a situation in which it is
ethically acceptable to circumcise a competent, informed young person who
consistently refuses the procedure”.[1]Perhaps
circumcision is so often performed on normal unconsenting infants is because
adults fear that older children or adults would not agree to it. In the
absence of immediate therapeutic need, such procedures would normally be
limited to cases in which the individual affected is able to give informed
personal consent.
Feasibility
The question of feasibility is, I suggest, a red-herring in the context of
this ethical discussion. It may be highly feasible to circumcise
infants as part their mothers’ confinement but that would not make it
ethical. Conversely the introduction of cheap highly available condoms and
anti-viral drugs to poor countries would be highly ethical but its
feasibility is low in the current international climate.
Risk compensation
It is naive in the extreme to assume that risk compensation would not
affect populations circumcised in infancy. Those who are brought up to
believe that they had to be circumcised to prevent them acquiring HIV will
share the same feelings of invulnerability to infection likely to occur in
those circumcised as adults or adolescents. As such, risk compensation cannot
be discounted for a population circumcised in infancy and cannot be an
argument in favour of circumcision of normal unconsenting infants.
Epidemiological impact
There are two significant threats to the potential for beneficial
epidemiological impact of male circumcision in terms of reducing the
prevalence of HIV. First, it is possible that following circumcision of a
male infant for the purpose of HIV prevention, other less invasive
prophylactic procedures would become available and wipe out the benefits
before the 15 year delay for the infant to be old enough to benefit from the
circumcision. Second there is the question of the level of efficacy; a
reduction of 0.67 cases per 100 man-years may prove insignificant in the
global fight against HIV. Given the potential for risk compensation or
iatrogenic transmission of HIV during circumcisions it is quite possible that
the net epidemiological effect will be harmful.
HIV Testing
Ethical concerns about HIV testing cannot be wholly discounted for infant
circumcision. HIV transmission from mother to infant is possible and it would
raise ethical concerns to perform surgery on a child to prevent a disease he
already had. Sparing circumcision for boys found to be HIV positive at or
soon after birth would stigmatise boys who might otherwise not be identified
as HIV positive. Circumcising them creates an infection risk.
Burden on health services
The burden to health services of circumcision does not end with a simple
procedure integrated seamlessly into “reproductive care”. Bailey
reported a 1.5% complication rate including anaesthetic morbidity, pubic
abscess and impotence.[2]Gray reported
complications in 3.6%[3]. Complications
of circumcision generally include tetanus, loss of the glans, loss of the
entire penis and death.[4]These
complications are potentially devastating for the individual and may present
an intolerable future burden on health services in low income countries.
Equipoise may not be possible in the light of reported complication rates and
a reduction in absolute risk [Gray] of only 0.67 cases of HIV per 100 man
years. This is particularly so when taking account of the likelihood that the
complication rate will be much higher when circumcisions are performed in
realistic African settings.
Harms intrinsic to circumcision
Most authors on the subject of male circumcision disregard any possibility
that the circumcision could, in the absence of complications, be in any way
harmful. The minute that the surgeon cuts the skin, harm is done and the
benefits of treatment have to exceed the harm before the doctor is doing any
good.[5]Male circumcision permanently removes normal,
functional, specialised tissue. It removes specialised sensory tissue[6]half the penile skin[6] and removes the
normal gliding function of facilitating intromission.[7]The penis has its appearance permanently altered by
circumcision. These changes are not welcomed by all. While some consider
circumcision to be a beautification others consider it a disfigurement.
Discussion
Rennie and colleagues’ statement that neonatal male circumcision has
significant cost and public health advantages must not go unchallenged. The
evidence for the effectiveness of male circumcision in preventing diseases is
weak. Only four randomised controlled trials have been published and all but
one of these all relate to HIV. All of the HIV trials have been terminated
early based on criteria set by the authors. Trials terminated early tend to
overestimate the size of the effect.[8] The one RCT of
circumcision to prevent UTIs concluded that circumcision did not reduce the
number of recurrences of UTIs.[9]Evidence in
respect of all other health benefits from circumcision is either
contradictory or non-existent. There is a further contradiction inherent in
the hypothesis that specialised immunological tissue in the foreskin
facilitates HIV uptake while not helping to prevent other STIs or UTIs.
It is important to consider whether infant circumcisions performed with a
view to preventing HIV should be deemed therapeutic. The term
therapeutic normally implies the treatment of existing disease or deformity.
The term prophylactic is perhaps more appropriate for interventions
intended to prevent disease in future. Prophylactic surgery on normal
unconsenting children normally raises serious ethical concerns.[10]Therapeutic surgery is normally justified on the basis of
disease being present, non-invasive treatment being impossible, surgery being
effective and valid informed consent being present. Non-therapeutic surgery
is normally only acceptable when it is requested by an informed consenting
adult. In the case of circumcision it seems odd that the one procedure should
fit into both categories.
Rennie and colleagues seek to deny male children autonomy in respect of
circumcision on the grounds that granting children autonomy would prevent
childhood immunisations. While immunisations are invasive, they are minimally
so. They remove no tissue and, for the greater part, leave no scar. As such
they can be justified on an equipoise of the risks to the child from the
immunisation against the benefits to the individual and society from the
control of communicable disease. Such a line in the case of circumcision
would be unjustifiable since circumcision causes a life-long burden in the
loss of the normal specialised tissue, loss of the foreskin’s functions
and a permanent change to penile appearance. Not all men are happy to have
been reassigned as “round-heads” to meet the wishes or needs of
someone else. A discussion of the ethical issues surrounding immunisation and
infant circumcision has been presented by Hodges and colleagues.[11]
With regard to children and consent/assent, it would
appear symbolic of the status of children in our society that we seek to
inflict markings on their bodies that they may not agree to later. The change
in appearance to the body and the loss of function remain with the individual
as a life-long mark of their position in society. Why should any individual
suffer the lifelong burden of something which - however desirable to society
- was not actuallynecessary for the child? Dickenson has stated that
the right for children to give consent is meaningless without the right to
withhold consent.[12]
It is troubling that Rennie and colleagues further
seek to erode children’s autonomy on the grounds of “the vagaries
of adolescent decision making”. In societies where male circumcision is
practised as a pubertal right these “vagaries” manifest in boys
running away to circumcision “schools” against their
parents’ wishes. This parallels our society in which rebellious
teenagers seek invasive procedures and come home with unsightly tattoos and
piercings which they may later regret. Parents here seek to limit their
children’s autonomy for this reason. Moreover a concern that
irreversible procedures might later be regretted by the young person drove
the UK Parliament to pass the Tattooing of Minors Act 1969 which forbids
tattooing of under-18s with no provision for parental consent.[13]
A parent’s power of proxy decision making in
respect of their child stems from their duty to protect and nurture the
child. As such it is right for parents to give consent to medical procedures
which are in their child’s best interests; but it is also their duty to
withhold consent on behalf of the child where the procedure would not be in
the child’s interests. Here it is appropriate for the parents to
exercise substituted judgement in respect of whether a child should have an
intervention or not. In view of the fact that the vast majority of men
reaching adulthood with their foreskin intact choose to retain it, it is
difficult to see that parents have any legitimate right to consent to
circumcision of their child except where there is unavoidable therapeutic
need for the procedure. HIV prevention - even where the virus is endemic
cannot reasonably override this principle in view of the harm inherent in
circumcision and the lack of any certain epidemiogical benefit as noted above.
Rennie and colleagues appeal to a study in Botswana which finds that 55%
of parents believe that if male circumcision is to be performed for
HIV prevention then it should be performed on young children in a hospital
setting. They state that it cannot be ethically sound without
“community based research” into its acceptability. Should not
sound medical evidence and ethical justification take preference to parental
beliefs? Moreover community consent should never be allowed to trump
individual autonomy.
Introducing circumcision into societies that do not presently have it in
their culture should raise ethical concerns. Is it culturally appropriate to
introduce circumcision into cultures that do not perform it? Is it acceptable
to provide a therapeutic context - albeit without therapeutic need -
to circumcisions in cultures which presently practice circumcision as a
tribal rite? Is it right to reintroduce circumcision to cultures which have
moved beyond child circumcision? Is it right to change local circumcision
practices to introduce the American style of circumcision?
A further concern is that of the “circumcision apartheid” that
may be introduced if circumcision is deemed the right thing. Will boys be
cast out for “lack of circumcision”? Already there are reports of
boys being bullied at school because their peers are circumcised and they are
not. Sadly the boys who are victims of the bullying have been sent home until
they get circumcised.[14]Thus the school
colludes with the bullies to bring about the circumcision of these children
rather than protecting them from the bullying and allowing them to retain
their physical integrity.
It would of course be wrong to deny the introduction of circumcision on
the basis that it is genital mutilation. Many medical procedures are
mutilating and yet are still entirely appropriate in treatment practice
provided they form part of a treatment hierarchy in which least invasive
procedures are used in preference to more invasive ones and the mutilating
treatment options kept as a treatment of last resort. As such, non-invasive
measures such as ensuring that condoms, anti-viral drugs and vaccines (when
developed) are available to those in poor countries must take precedence over
the imposition of circumcision.
It is incumbent on the west to address the real problems of poor
countries. Poverty itself is a risk factor for HIV and we must deal with this
at source. We must ensure that African women are no so desperate that they
have to sell sex to feed their children. We must ensure that condoms and
pharmaceuticals are available to poor countries before we seek to impose
American cultural practices - such as male circumcision - upon them. What are
Africans to make of the fact that we demand that they don’t circumcise
their girls but that they must circumcise their boys?
While Africa remains poor it could be a grave mistake to seek to introduce
circumcision. The reality is that it will facilitate iatrogenic transmission
of HIV, encourage male to female transmission[15]and bring about
risk compensation. Another factor is that male circumcision may facilitate
HIV transmission by reducing production of Langerin - a natural barrier to
HIV transmission.[16]These factors
could more than offset the 0.66 cases of HIV per hundred man years saved by
introduction of male circumcision. We must never forget that the USA has the
highest prevalence of male circumcision in the developed world and the
highest prevalence of HIV. If in 20 years time male circumcision has made the
HIV problems of Africa worse, it will then be very difficult to eradicate the
practice.
Choudhury et al raise a very important point highlighting the missed
importunity in treating and preventing the spread of transmissible
infections detected in voluntary blood donors.The continuing lack of
counselling services even in a very literate Indian state like Kerala is
very disappointing. There is still widespread concern and apathy regarding
donating blood as I learned during my recent visit to...
Choudhury et al raise a very important point highlighting the missed
importunity in treating and preventing the spread of transmissible
infections detected in voluntary blood donors.The continuing lack of
counselling services even in a very literate Indian state like Kerala is
very disappointing. There is still widespread concern and apathy regarding
donating blood as I learned during my recent visit to Kerala and it is
common practice for blood donors to be paid by the recipient’s family. The
financial incentive and the difficulty in recruiting donors makes the
counselling process even more challenging from an ethical perspective.
Though the authors suggest rapid test kits as a solution, implementation
will be expensive. I hope the state government in Kerala will take up the
sensible recommendations made by the authors.
I am grateful to C Parker for his close reading and detailed
criticism of a paper of 2005 in which I suggested some possible advantages
of moving from controversy to conversation in medical ethics.1,2 His
arguments are incisive, but also illustrate what I was attempting to
articulate. In conversation of the kind I was commending, one’s aim is not
to defend or attack a thesis but to explore the possibilit...
I am grateful to C Parker for his close reading and detailed
criticism of a paper of 2005 in which I suggested some possible advantages
of moving from controversy to conversation in medical ethics.1,2 His
arguments are incisive, but also illustrate what I was attempting to
articulate. In conversation of the kind I was commending, one’s aim is not
to defend or attack a thesis but to explore the possibility of coming to a
shared understanding of agreement or disagreement on the subject under
discussion. To this end, a degree of negative capability about the
definition (and especially the stipulative definition) of one another’s
ideas may be necessary until, through the to-and-fro of conversation, each
has had confirmed by the other a clearer understanding of what these ideas
mean to them and of the contexts in which they find them meaningful.
Whether a commendation of the advantages of such an approach to medical
ethics can be successfully defended against the kind of skilful forensic
analysis employed by Mr Parker is doubtful however, not least because to
attempt such a defence would require abandoning the very approach one is
seeking to commend. Perhaps these advantages can only be shown, by
actually engaging in conversation.
These remarks should not be taken as indicating any lack of respect
for Mr Parker’s arguments, nor for what is a perfectly proper activity for
professional philosophers. In my paper I acknowledged that there are
occasions when the sharp edge of controversy is appropriate and that
controversies are unlikely to cease. Insofar as the aim of those engaged
in controversy is to mount a potentially successful attack or defence
however, this approach has some limitations in the multidisciplinary field
of medical ethics. Since ethics is not an exact science, and since
morality is essentially contestable, attempts to render moral arguments
invulnerable rarely succeed, and the consequent philosophical debates are
potentially interminable. In medical ethics however, awaiting the outcome
of all such debates sine die is not always possible or advisable. That is
not only because medical ethics is oriented to practice, but also because
a variety of different moral arguments, few of which in themselves are
conclusive or sufficient, often need to be considered before coming to a
fallible judgement. May I illustrate this last remark with reference to
two of Mr Parker’s criticisms of my paper.
First, Mr Parker dismisses my question about whether an in vitro
embryo is actually encountered “as a ‘you’ rather than an ‘it’” as a
‘test’ which is ‘vacuous’ and ‘not usable’. If that were the sole ‘test’
of whether or not an in vitro embryo is to be accorded the moral status of
a person, I would agree with him. But that was not the point of my
suggestion. I simply do not know whether any embryos in vitro are
persons, and I do not see how I could know, since to claim or deny that an
embryo is a person is to make a moral judgement. It is precisely because I
do not know, that I find the question of whether the embryo is actually
encountered “as a ‘you’ rather than an ‘it’” helpful. The point of my
question is not to elicit a knock-down argument about whether an embryo is
or is not a person, but rather to contribute to the formation of a
fallible moral judgement on the matter. In forming a moral judgement on a
matter about which there is no certainty, it is important to listen to
testimony, and allow it to question one’s own prejudices. If anyone can
testify that he or she actually encounters an embryo in vitro as ‘you’
rather than ‘it’, that is something that we must take very seriously
indeed in coming to a judgement.
Secondly, Mr Parker dismisses the appeal in my paper to the Golden
Rule, because it provides no ‘basis for a decision mechanism in moral
conflict’ and is ‘based on an assumption that one is comparing only
virtuous actions’. But in medical ethics that is an assumption which it
seems to me reasonable to make, namely that the Golden Rule is addressed
not to the ‘tough robber’ or ‘sadistic boxer’, but to the conscience of
responsible people of good will, called upon to make practical decisions,
and aware that whatever is decided may have a significant moral
opportunity cost. That, of course, may be yet another example of my
‘tendency to place exaggerated faith in individuals who do not deserve the
honour’, but where there is no agreed decision mechanism to take the place
of fallible judgement, as is commonly the case in medical ethics,
dispensing with the expectation of virtuous judges seems unwise.
K M Boyd
Professor of Medical Ethics University of Edinburgh
Medical School Teviot Place Edinburgh EH8 9AG
References:
1. Parker C. Perspectives on ethics. J Med Ethics 2007; 33:21-23.
2. Boyd KM. Medical ethics: principles, persons and perspectives: from
controversy to conversation. J Med Ethics 2005; 31:481-6.
The article by Kassirer outlines some of the inherent struggles
within the universal health care system of Canada (1). Additional
communications reinforce these struggles (2). Is the Canadian Medical
Association hiding behind the screen of autonomy while discussions of
private public health care are in the minds of the Canadian people and its
health care providers? (3).
The article by Kassirer outlines some of the inherent struggles
within the universal health care system of Canada (1). Additional
communications reinforce these struggles (2). Is the Canadian Medical
Association hiding behind the screen of autonomy while discussions of
private public health care are in the minds of the Canadian people and its
health care providers? (3).
References:
1. Kassirer JP. Assault on editorial independence: improprieties of
the Canadian Medical Association J Med Ethics 2007; 33: 63-66.
2. Tuohy CH. The costs of constraint and prospects for health care
reform in Canada. Health Aff (Millwood) 2002; 21(3):32-46 .
3. CBCnews (February 21, 2006). Canadian Medical Association Journal
fires 2 editors. Retrieved February 6, 2007, from
http://www.cbc.ca/health/story/2006/02/21/cmaj060221.html#skip300x250
In the article by Sokol and Car titled 'Patient confidentiality and telephone consultations: time for a password'(1), the authors express
their concerns re: access to a patients medical information and outline
a
strategy using passwords during telephone consultations to secure
patient
privacy and protect against the unauthorized access to private and
personal medical records/history. While we sympathize...
In the article by Sokol and Car titled 'Patient confidentiality and telephone consultations: time for a password'(1), the authors express
their concerns re: access to a patients medical information and outline
a
strategy using passwords during telephone consultations to secure
patient
privacy and protect against the unauthorized access to private and
personal medical records/history. While we sympathize with the author's
concerns these recommendations may only increase the access health care
personnel have to their patients, and furthermore increase the
frustration
patients incur during access to their personal information and
communication with their health care provider. Previous reports have
suggested a negative experience for nurses and their telephone
consultations with patients (2). It would appear that the addition of a
password system may increase patient dissatisfaction and decrease
overall
public perception in a medical system already plagued with inadequacies.
Perhaps a better alternative to telephone passwords would be
to directly involve patients and consumers of health care with regards
to
the access and distribution of patient information (3).
References:
1. Sokol DK, Car J. Patient confidentiality and telephone
consultations: time for a password J Med Ethics 2006; 32: 688-689.
2. Giesen P, Charante EM, Mokkink H, Bindels P, van den Bosch W,
Grol
R. Patients evaluate accessibility and nurse telephone consultations in
out-of-hours GP care: determinants of a negative evaluation. Patient
Educ
Couns. 2007; 65(1):131-6.
3. Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods
of
consumer involvement in developing healthcare policy and research,
clinical practice guidelines and patient information material. Cochrane
Database Syst Rev. 2006 Jul 19;3:CD004563.
The issue of transferring human research specimens across national
boundaries has become a hot issue especially for Developing Countries due
to fears of exploitation. Stories of "parachute, tourist and mosquito"
researchers are common in Africa and other Developing Countries. These
are researchers who come from Developed Countries to Developing Countries
just to collect specimens and then leave to go...
The issue of transferring human research specimens across national
boundaries has become a hot issue especially for Developing Countries due
to fears of exploitation. Stories of "parachute, tourist and mosquito"
researchers are common in Africa and other Developing Countries. These
are researchers who come from Developed Countries to Developing Countries
just to collect specimens and then leave to go back and work in their
laboratories. The next time one hears about these researchers is when
they are publishing. Researchers and institutions from Developing
Countries also complain of being "used" as specimen collection technicians
and specimen collection centres who are not in any way involved in the
analysis of data, writing, publication and sharing of other benefits.
In order to ensure that we minimise on the possibilities of
exploitation and promote partnership, material transfer agreements (MTAs)
are the way forward. We can no longer depend on trust alone since the
trust has been abused on so many occasions. A Material Transfer Agreement
(MTA) is a contract that governs the transfer of tangible research
materials between two institutions. It defines the rights of the provider
and the recipient with respect to the materials, and any derivatives. The
MTAs would have to spell out the exact specimens being transferred, the
quantities being transferred, the exact purpose for which they are being
transferred, issues relating to the maintenance of confidentiality, access
issues, continuation of partnership, publication and intellectual property
issues as well as the disposal of the specimens. The MTA would even
specify that no new study can be conducted using the stored specimens
without the involvement of the provider institution and without the
approval from the provider institution's ethics committee.
Because of some problems that have occured in the past, some
institutions in Developing Countries have been forced to upgrage their
storage facilities so as to be able to keep duplicates of specimens
transferred to other countries. Whilst this precautionary measure may make
sense to the institutions and researchers, to the research participant it
translates into "more of the specimen than is necessary for the specific
study".
Researchers are not the owners of human specimens that have been
kindly donated by research participants but are merely stewardes entrusted
with this resource on behalf of mankind. To this end, the Ethics
Committees in Developing Countries should review the MTAs on behalf of
communities and the "real" owners of the specimens so as to ensure that
the rights and welfare of research participants continue to be promoted
and protected. Instead of continuing to send specimens to other
countriues, international collaborative research should assist in building
the capacities of Developing Country institutions, laboratoties and
researchers so that in future they can conduct their own research
independently. That way local institutions and researchers can drive the
research agenda and conduct relevant and priority research.
Dear Editor,
The Queen of Hearts she made some tarts all on a summer's day;
The Knave of Hearts he stole the tarts and took them clean away.
The King of Hearts called for the tarts and beat the Knave full sore;
The Knave of Hearts brought back the tarts and vowed he'd steal no more.
Nursery Rhyme (traditional)
"Off with their heads" - the Queen of...
Dear Editor,
David Bohm (physicist) wrote several books which resonate with the concerns raised about problems inherent in discussions about ethical issues. His emphasis was similar to that of Kenneth Boyd - the importance of open ended dialogue rather than discussions imposed by an agenda. David Bohm taught how this leads to deeper levels of meaning and the possibility of coming to better solutions than those impo...
Dear Editor,
Machado and colleagues rightly argue that the concept of brain death evolved independently of any social interests(1). However, they ignore the fact that its social reception has indeed depended, and continues to depend, on such interests.
The concept of brain death was canonised soon after the publication of the report of the Harvard Committee in 1968(2). The committee, on which two trans...
Dear Editor,
As Machado and colleagues point out(1), the idea that death of the brain, while the body remains alive, might be considered the death of the person did, indeed, develop in isolation from the practice of organ transplantation. But there was no attempt to define brain death and establish formal clinical testing for its diagnosis as a basis for the certification of death(2,3) until that became necessary f...
Rennie and colleagues are to be welcomed for using the age of circ...
Dear Editor,
Choudhury et al raise a very important point highlighting the missed importunity in treating and preventing the spread of transmissible infections detected in voluntary blood donors.The continuing lack of counselling services even in a very literate Indian state like Kerala is very disappointing. There is still widespread concern and apathy regarding donating blood as I learned during my recent visit to...
Dear Editor,
I am grateful to C Parker for his close reading and detailed criticism of a paper of 2005 in which I suggested some possible advantages of moving from controversy to conversation in medical ethics.1,2 His arguments are incisive, but also illustrate what I was attempting to articulate. In conversation of the kind I was commending, one’s aim is not to defend or attack a thesis but to explore the possibilit...
Dear Editor,
The article by Kassirer outlines some of the inherent struggles within the universal health care system of Canada (1). Additional communications reinforce these struggles (2). Is the Canadian Medical Association hiding behind the screen of autonomy while discussions of private public health care are in the minds of the Canadian people and its health care providers? (3).
References:...
Dear Editor,
In the article by Sokol and Car titled 'Patient confidentiality and telephone consultations: time for a password'(1), the authors express their concerns re: access to a patients medical information and outline a strategy using passwords during telephone consultations to secure patient privacy and protect against the unauthorized access to private and personal medical records/history. While we sympathize...
Dear Editor,
The issue of transferring human research specimens across national boundaries has become a hot issue especially for Developing Countries due to fears of exploitation. Stories of "parachute, tourist and mosquito" researchers are common in Africa and other Developing Countries. These are researchers who come from Developed Countries to Developing Countries just to collect specimens and then leave to go...
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