Gelbman and Gelbman argue correctly that, as currently used, "DNR"
orders are confusing and could lead patients to have appropriate therapy
withheld. Their suggestion that we use more transparent orders, such as
"no chest compressions," merits consideration.
However, I disagree with their contention that defibrillation is not
extraordinary or heroic. Unlike their other examples- intubation and
vasoactive me...
Gelbman and Gelbman argue correctly that, as currently used, "DNR"
orders are confusing and could lead patients to have appropriate therapy
withheld. Their suggestion that we use more transparent orders, such as
"no chest compressions," merits consideration.
However, I disagree with their contention that defibrillation is not
extraordinary or heroic. Unlike their other examples- intubation and
vasoactive medications- defibrillation, by definition, is restricted to
use in arrest settings for ventricular fibrillation. Cardioversion, as
used for tachyarrhythmias in non-arrest settings, would be a better
example.
Without question, our obligation to ensure appropriate use of life
support depends on widespread consensus regarding the intent and meaning
of language used when we enter orders.
This argument looks like a straw man to me and one framed with
the golden aura of "ethics". Most modern medicine and healthcare is
"life extension" and I don't see population control advocates
suggesting modern medical practices be stopped. The exception might be
IVF using some reasonable arguments that infertility is not a medical
condition worthy of heroic, expensive, and/or insurance reimbursable
efforts.
This argument looks like a straw man to me and one framed with
the golden aura of "ethics". Most modern medicine and healthcare is
"life extension" and I don't see population control advocates
suggesting modern medical practices be stopped. The exception might be
IVF using some reasonable arguments that infertility is not a medical
condition worthy of heroic, expensive, and/or insurance reimbursable
efforts.
From your abstract: "If the threat of overpopulation creates a
rights conflict between the right to come into existence, the right to
reproduce, the right to more opportunities and space (if, indeed, these
rights can be successfully defended), and the right to life, the latter
ought to be given precedence."
There is no inherent right to reproduce. (The assumption that there
is appears to be an unstated and undefended one.) A better argument might
be made that there is a right to found a family unit of some kind, but
doing so does not require biological reproduction. Rather the
requirement is the intention and ability to rear children. This is the
difference between "I want a baby" and "I want to actively be an
excellent parent for 18+ years". There is no unlimited right to produce
children whom one is incapable of rearing well or whom one will beat or
starve or kill.
Further, if unlimited reproduction threatens the future survival of
the group, or significantly increases future harm and suffering of greater
numbers of people (which is exactly what adding to overpopulation does)
then there is certainly no right to reproduce. Doing so in such a
scenario would be clearly unethical. To argue otherwise is to argue
in favor of future greater suffering of more people for personal selfish
reasons.
For more on these matters I suggest www.paulchefurka.ca
In the article ‘Should we force the obese to diet?’, Giordano[1] drew
similarities between the anorexics and the obese, suggesting that if
people could accept it ‘ethical to force people to maintain “a proper
diet” in the anorexics, there could also be similar justifications to
force the obese to diet. There are problems with this premise. First of
all, even though anorexia and obesity are both related to problems with
e...
In the article ‘Should we force the obese to diet?’, Giordano[1] drew
similarities between the anorexics and the obese, suggesting that if
people could accept it ‘ethical to force people to maintain “a proper
diet” in the anorexics, there could also be similar justifications to
force the obese to diet. There are problems with this premise. First of
all, even though anorexia and obesity are both related to problems with
eating and diet, and that people with anorexia may share some symptomatic
features with people who are obese, they are necessarily different
problems attracting different strategies of intervention. Medline Plus
defines anorexia nervosa as primarily an eating disorder
(http://www.nlm.nih.gov/medlineplus/ency/article/000362.htm#Definition,
accessed July 30, 2008). People who suffer from it are not uncommonly
driven by ‘an intense fear of weight gain and a distorted body image’.
Although the condition is complex and its cause multi-factorial, the
mental component seems significant. On the other hand, obesity simply
describes a condition of excess body fat
(http://www.nlm.nih.gov/medlineplus/obesity.html, accessed July 30, 2008).
Although it is often associated with over eating, its cause is also
diverse with a strong socio-economic component. Unlike anorexia though, it
is unlikely that most obese people have been driven to it as a result of a
distorted body image.
The predominant mental component of anorexia would appear to explain
the rationale behind the provision for force feeding as an exceptional
treatment strategy under the Mental Health Act 1983. Force feeding is
reserved for those anorexics who have lost so much body weight that vital
body organs stop functioning properly and death becomes imminent. That
forced feeding is considered potentially and immediately life saving is
not a sufficient justification in itself to override a person’s autonomy
to refuse feeding. Many examples attest to this, for example society does
not necessarily accept force feeding an individual with a terminal disease
who refuses feeding, or an individual who chooses starvation as a form of
peaceful political manifestation. Both Western ethical traditions and
Anglo-American law uphold individual autonomy as a fundamental principle
in human relations.[2] Individuals are recognised to be their own agents
with the rights to pursue their own goals and interests in life free from
external interference. In their pursuit, individuals may sometimes
undertake actions that could endanger their health or even their lives.
Nevertheless, this does not immediately provide cause for intervention.
External interference may be considered justified when an individual
lacks the capacity for self-determination. Competence depends on the
person’s ability to understand basic information that will allow him or
her to reason out his or her preferences in accordance with a relatively
consistent set of values. Competence is task specific. A person who is
incompetent to make one decision may be competent to make other decisions.
Furthermore, decisions that have potentially serious consequences for the
person often demand a higher level of competence while less significant
decisions will require less.[3] An anorexic who starves himself or herself
to the point of imminent death in pursuit of a distorted body image would
not appear to be a person competent enough to make decisions concerning
his or her own feeding needs. Many people would therefore accept
temporarily overriding their right to self-determine, force feeding them
under the circumstances. The urgency of the matter is also taken into
consideration.
Obesity is undoubtedly an important risk factor for serious diseases
such as cardiovascular diseases and diabetes. Yet, the association is not
straight forward and the development takes place over a prolonged period
of time. While it may be true to say that over eating is an important
reason for obesity, it is certainly not the only reason. Eating foods high
in unsaturated fats or carbohydrates with poor nutritional value
constitute other important reasons.[4] Nevertheless, even though it is
possible to educate people to eat more healthily, personal responsibility
is not the only nor perhaps even the primary determining factor for
success. Indeed, considering that people live in complex social situations
that can potentially limit their courses of action, long term health may
not even be the individual’s priority concern in life.
By stating that ‘the drastic measures needed to reverse the alarming
pandemic are as yet purely voluntary’, Giordano situates the problem of
obesity primarily on the individual. The implication seems to be that
dieting will reverse the problem of obesity, and if individuals cannot be
relied to undertake the responsibility themselves to eat a proper diet,
they could be considered mentally incompetent providing justification for
others to discipline them. The discourse reflects a reductionistic way of
understanding the human condition. It ignores the intricate relationships
between individuals and their social environments. By focusing solution on
the individual, it distracts society from examining social realities and
social practices that are potentially unhealthy and that could equally
contribute to the obesity epidemic. It perpetuates the illusion that
individual’s health is primarily and directly a result of individual
appropriation through rational choice, and that ‘we can as individuals
control our own existence’.[5] Thus, failing to conduct our lives
according to predetermined standards is not only a reflection of personal
incompetence but also of moral inadequacy. This opens individuals to moral
blames and reprisals that justify the removal of their basic rights for
self-determination since they are no longer regarded as equal moral
beings.
While there is no doubt that reducing obesity can reduce people’s
sufferings from serious biological diseases, it is questionable as to
whether draconian measures such as force dieting which remove people’s
right for self-determination and render them inferior moral beings, will
genuinely bring them improved health and well-being over time.
The author acknowledges the support of the University of Otago
Research Committee, by means of The University of Otago Postgraduate
Publishing Bursary (PhD)
References
1. Giordano, S. Should we force the obese to diet? J. Med. Ethics
2008;34:319
2. President's Commission for the Study of Ethical Problems in Medicine
and Biomedical and Behavioral Research. In: Mappes TA and Degrazia D, eds.
Biomedical ethics. New York: McGraw-Hill 2001:97-102.
3. Buchanan, A.E. and Brock D.W. Standards of competence. In: Mappes TA
and Degrazia D, eds. Biomedical ethics. New York: McGraw-Hill 2001:109-
114.
4. The Pan American Health Organization. Regional strategy and plan of
action on an integrated approach to the prevention and control of chronic
diseases. Washington D.C.: The World Health Organization 2007
5. Crawford, R. Healthism and the medicalization of everyday life. Int. J
Health Serv. 1980;10(3): 365-388.
Modern genetics differs crucially from the old eugenics, despite the
sad fact that they coexisted for few decades in the respected countries
like Sweden and Canada, where thousands of coercive sterilizations of
mentally ill were taking place until early 1970s (1). Fortunately, the
focus has shifted in the meantime from the genetic health of the
population to that of an individual, and even more importantly -
individual...
Modern genetics differs crucially from the old eugenics, despite the
sad fact that they coexisted for few decades in the respected countries
like Sweden and Canada, where thousands of coercive sterilizations of
mentally ill were taking place until early 1970s (1). Fortunately, the
focus has shifted in the meantime from the genetic health of the
population to that of an individual, and even more importantly -
individual autonomy is now highly respected, with non-directiveness as a
“dogma” of genetic counseling. But on the other hand, through accumulation
of many private choices, the effects of the modern genetics could
nevertheless be “genuinely” eugenic.
For instance, over 90% of pregnant women who are given a Down
syndrome (DS) diagnosis choose to have an abortion, which is in
consequence substantially decreasing the number of people with DS (2).
Smaller community of people with DS (being less “heard”) means not only
less opportunities and services provided for them, but also decreased
research interest in (improving) their condition. Furthermore, elimination
of DS and other genetic “defects” slowly changes perception society has
about disabled, being increasingly seen as something “abnormal”,
“preventable”, their birth even as “irresponsible” (3). Diminishing
opportunities for disabled, changed societal perceptions and its
pressures, combined with the routinisation of genetic testing, prevent
parents from making really autonomous choice. (Some disabled rights
advocates even argue that it is unlikely that prenatal testing would be
resourced to the existing degree only to provide more informed choice,
which would mean that state has (financial) interests in diminishing
number of disabled people.) The result is – arguably - a systematic bias
against the birth of genetically disabled children. The costs of prenatal
testing programs are sometimes compared to the financial savings in the
reductions of individuals requiring extensive medical and social services
(3). On one hand, this is quite usual thing to be done in a modern health
care system. But on the other, it can further influence the attitude of
modern genetics and society towards the disabilities (which could be seen
primarily as a “cost”), and also impede parent’s autonomy (thinking that
decision to keep disabled child is irresponsible).
Any pressures (e.g. societal, professional and financial) to limit
individual’s choice in the issues of genetics and reproduction and giving
up the non-directiveness of genetic counseling, meet not just emotional
but also rational criteria to be qualified as eugenic.
Competing interests
None.
Literature
1. D..J. Kevles. Eugenics and human rights. BMJ 1999; 319: 435-438.
2. C. Mansfield, S. Hopfer & T.M. Marteau. Termination rates
after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and
Turner and Klinefelter syndromes: a systematic literature review. European
Concerted Action: DADA (Decision-making After the Diagnosis of a fetal
Abnormality). Prenat Diagn. 1999:808-12.
3. A. Asch. Prenatal Diagnosis and Selective Abortion: A Challenge to
Practice and Policy. American Journal of Public Health. 1999: 1649-1657.
Professor Bock's thorough determination of medically valid religious
belief overlooked the role played by the physician's personally held
beliefs. The physician population is not a monolithic science identity.
For example, a specialist does not see the world the same as the general
practitioner. Overly stereotypical, the oncologist assumes that the
general practitioner just wants to comfort their patients rather than...
Professor Bock's thorough determination of medically valid religious
belief overlooked the role played by the physician's personally held
beliefs. The physician population is not a monolithic science identity.
For example, a specialist does not see the world the same as the general
practitioner. Overly stereotypical, the oncologist assumes that the
general practitioner just wants to comfort their patients rather than
pursue a cure; and the general practitioner feels the the oncologist
doesn't see the "whole" person.
Even among Pediatric ICU Consultants their differences were noticable
to families when one took over the MRP from the previous. Agreement about
treatment issues that had been settled were re-opened with supposedly "new
evidence". I found it interesting that the test results were identical to
the results that the previous consultant had.
I am not advocating for a "neutral science" physician, but an
awareness of the "religious beliefs" of the physician and treatment team.
The religious interpreter sometimes needs to assist in evaluating the
physician's medically valid religious beliefs.
I thank David Hunter for his response to my ‘somewhat vitriolic
attack on its central premises and conclusions’; and may I say that in the
context of an informality of logic my overriding vitriolic or critical
concern was with his arguments, and my conclusion is still that they are
ineffective in serving his purpose.
There are some minor points of misunderstanding on Hunter’s part
which may be helpful to conside...
I thank David Hunter for his response to my ‘somewhat vitriolic
attack on its central premises and conclusions’; and may I say that in the
context of an informality of logic my overriding vitriolic or critical
concern was with his arguments, and my conclusion is still that they are
ineffective in serving his purpose.
There are some minor points of misunderstanding on Hunter’s part
which may be helpful to consider before assessing the value of his
arguments based on an idea of mathematical proof. He thinks I am not
correct to attribute to him the view that ‘the NRES system is the worst of
this type of delegated authority’. The context for our discussion was a
comparison between the REC and the NRES triage: to imagine an even worst
system does not necessarily involve one with this type of delegated
authority, eg to imagine an anti-research group evaluating research. For
Hunter to offer an example of a form of pre-review which is not even of
this type of delegated authority fails to address my comment. Regarding
my analogy to the triage nurse he has not dealt well with it for the REC
too acts in a ‘situation of need’, and of course, being human may make a
mistake; but he is clearly mistaken in thinking this would be avoided had
an entire care team done the job. We have too many counter examples of
this; and the triage nurse often makes a correct ‘final decision’ in
bandaging a patient’s finger.
Hunter mistakenly thinks my comments about his second argument
‘rather uncharitable’ because he believes they suggest his evidence was
merely personal to him, but my comments in this paragraph clearly referred
to committees and their members. The more important point here, however,
is that he does not attempt to deal with my counterargument to an idea of
‘blindness on some issues’: he has not shown that NRES Advisers will miss
ethical issues. Regarding his current view that ‘50% of REC members have
had this experience’ of ethical icebergs, or missing ethical issues, he
says ‘many eyes make light work’. This is poor evidence, for 50% of REC
members refers to members from many RECs; in the REC considering an
application it may be 100% missing the ethical issue, eg Northwich Park.
He attempts to clarify his third argument, saying RECs ‘are supposed
to represent the general populace if some views aren’t represented then
they are failing in their jobs’. This is either an argument that each REC
ought to contain a Dr Shipman, or there is some unclarity in his
interpretation of ‘represents’. Second, ignoring the opacity of colour,
his view that people’s ethical views colour what issues they see as
ethically important...’ is either necessarily true, or necessarily false:
ie the view is the issue, or the view does not have a positive or negative
attitude to the issue, eg one supports the innocent but can’t tell if A is
innocent.
His denial that ‘the ethicist is the paradigm person ...’ who will
apply ethical theories to issues is weak, for he understands the debates
in REC meetings as a clash of different ethical theories, ie the
ethicist’s repertoire represents the views which others strive to attain.
It seems that Hunter’s perspective is that in the way that clinicians’
knowledge represents the technical requirements of the REC, the ethicists’
knowledge would represent the ethical dimension. He believes the ideal
REC has a mixed membership with different expertise: exactly, and given
this view some may wonder whether the status of the lay ethicist should be
raised to that of expert in the REC. But of rather more importance and in
a setting with some semantic darkness, he seeks to deny the priority of
moral concern relative to theories of ethics with ‘What I am claiming is
that different people have different ethical views, some of which can be
expressed in terms of different ethical theories’. As a response to
clarify his position this statement cannot be distinguished from a
tautology. Incidentally, he does say that ‘we do not currently know which
ethical theory, if any, is the correct position to take...’. The question
is, the correct position to take on what. Ethical theories may be part of
an academic exercise but moral conduct is not. He concludes: ‘If there
are many different ethical views, then a few people are unlikely to serve
as appropriate representatives ...’. He cannot see the priority of the
moral life which each of us is faced with: it is this which gives us our
perspective, ie the qualification of the NRES Advisers on this particular
point is that they are human.
Hunter’s last argument which is finally to offer evidence for his
view of the superior efficacy of the REC as opposed to the NRES triage, is
an appeal to political theory; it compares a nation’s citizenry with a
small group, ie the REC, to show that the smaller group, the NRES
Advisers, are less reliable. Given the variability in intellect and
attitude and a host of other variables it is not justifiable to bestow any
relevant characteristics of the mass onto a smaller group to conclude that
they are more reliable than an even smaller group. This is clearly an
article of faith with Hunter: ‘it will in general be more reliable...’.
But this is the very point at issue: he offers no evidence for it. No
evidence except a ‘mathematical proof’ which to be expected is not a
mathematical proof.
His so-called mathematical proof is ‘based on the idea that the more
times the event is iterated the more likely it is that the average outcome
will occur’. Now, this is alright for tossing a coin, but it says nothing
about any supposed superiority in a democratic system. Hunter continues:
‘If the average outcome is more likely to be right (ie greater than 50%)
than wrong then the more iterations the more likely the right answer will
be reached by the process’. This is a tautology, but can we make anything
out of it?’ First, the system is unlike the idea it is supposed to be
based on, ie the average (right) outcome is greater than 50% but in the
coin example the average outcome of 50% occurs. Second, the proof is
limited to ‘an expert-driven environment since each individual chooser
must have a greater than 50% chance of arriving at the correct answer’.
Disregarding the low expectations of our experts this proof says nothing
about the numbers of experts required to meet this standard; it does not
distinguish the REC from the NRES Advisers.
It seems that Hunter has attempted to replace Condorcet’s calculus of
probabilities with a calculus of certainty but also he relies on what he
calls an allegation about Condorcet’s Jury Theorem as if he did not
believe it: this untutored authoritarianism would leave the Frenchman
turning in his grave. But Hunter’s final statement is his tour de force:
it is that ‘the collective performance of a group in arriving at a correct
judgement on the basis of majority rule will be superior to the average
individual performance’. We must of course first amend this statement to
‘the average collective performance ...’ but the statement is built on his
prior assumptions about ‘greater than 50%’ and the ‘51% expert’ and all it
says is that the collective chooses, not how it chooses correctly. The
statement does not describe how REC’s come to a decisions, eg how the real
expert’s initially minority view brings a majority to her view. A minor
conclusion here is that coin tossing is not a good analogy for intelligent
decision making, and the mathematical content tells us no more than that a
decision is made. A major conclusion is that Hunter’s theorem has nothing
to say about the quality or effectiveness of any collective performance,
ie it offers no comparison of the REC and the NRES triage.
But as Hunter is keen to use a mathematical proof to show that the
NRES triage as a class is likely to be less efficacious than a REC let us
look again at his perspective. If we note the distinction between process
and outcome in the work of committees and consider his ‘the collective
performance ...’ statement as referring to process, we see on this basis
that the committee is always right, for not all individuals will agree in
some of the cases, ie the statement under this interpretation is a
tautology. However, if we consider the outcome of a committee’s work and
the occasions when the committee qua committee chooses wrongly, ie against
the wishes of some individuals, then the statement is false. It is clear
that Hunter’s statement, ‘the collective performance ...’ is necessarily
true, or necessarily false; it cannot help him to justify his view about
the superiority of the REC in this context. A continuous difficulty in
the melange of mathematics and politics has been a lack of plausible
argument. As I said in my original response to Hunter’s article the
triage method has not been shown by him to be relatively ineffective.
Author’s affiliations
C Parker Leeds (East) Research Ethics Committee, Lay Member
Clinical Sciences Building, Room 5.2, St James’s University Hospital,
Beckett Street, Leeds LS9 7TF
Competing interests: none
REFERENCES
1. Hunter D, Proportional ethical review and the identification of
ethical issues. J Med Ethics 2007; 33: 241-245. Doi:10.1136/jme.2006.
016782
2. Parker C, Is triage incoherent? J Med Ethics 2008; E-letter:
http://jme.bmj.com/ cgi/eletters/33/4/241.
3. Hunter D, In response to ‘Is triage incoherent?’ J Med Ethics
2008; E-letter: http:jme.bmj.com/cgi/eletters/33/4/241#1967,9Jan2008
4. Department of Health. Report of the Ad Hoc Advisory Group on the
Operation of NHS Research Ethics Committees. June 2005.
5. Central Office for Research Committees. Summary of Comments on
AHAG Report, January 2006:4.
6. Association of Research Ethics Committees. AREC Council Response
to “Implementing the recommendations of the Report of the Ad Hoc Advisory
Group on the Operation of NHS Research Ethics Committees: a consultation”.
COREC/NPSA publication, January 2006. April 2006.
7. Hunter D, The roles of research ethics committees: implications
for membership. Research Ethics Review 2007; 3-1, 24-26.
The way to study the problem of coercion of Wertheimer and Miller,1
is certainly correct and arrive at a conclusion very acceptable: The offer
of financial payment does not coerce because it cannot coerce.
They claim finally that the question as to when the offer of
financial payment constitutes an undue inducement, is a topic that merits
separate analysis.
However, we believe that the payment for research...
The way to study the problem of coercion of Wertheimer and Miller,1
is certainly correct and arrive at a conclusion very acceptable: The offer
of financial payment does not coerce because it cannot coerce.
They claim finally that the question as to when the offer of
financial payment constitutes an undue inducement, is a topic that merits
separate analysis.
However, we believe that the payment for research participation is an
act absolutely ethical and respectful of the rights of potential
participants.
Participation in research without financial reward, would require
from participants an act of altruism that would be the only one that occurred
throughout the process.
The public knows that in scientific research are moving large sums of
money and it is not logical to ask them to be face more or less certain
risks without any reward, only by altruism.
There is no altruism in companies that promote research, and they
expect to get great benefits.
There is no altruism in the researchers who developed the projects,
as they have financial rewards, in addition to the academic ones.
There is no altruism in the centres to which researchers belong
because, in addition to prestige, they also have some involvement in the
economic sphere.
There is no altruism in health care workers who subsequently used the
drug has been approved.
There is no altruism in pharmacists who sell the product in its
pharmacies.
So? Why should only the participant who has to face the risks have to be altruistic?
We therefore believe that the payment for research participation is ethically acceptable.
We declare that we have not conflict of interest.
1. Wertheimer A, Miller FG. Payment for research participation: a
coercive offer? J Med Ethics 2008;34:389-392. doi:10.1136/jme.2007.021857
I agree with Baines [1] that there are difficulties with the
application of the four principles approach to incompetent children.
Baines says that the most important principle – respect for autonomy – is
not directly applicable to incompetent children and the principle of
beneficence is complicated by difficulties in assessing what a child’s
interests are. Moreover there are other problems with the four principles
appro...
I agree with Baines [1] that there are difficulties with the
application of the four principles approach to incompetent children.
Baines says that the most important principle – respect for autonomy – is
not directly applicable to incompetent children and the principle of
beneficence is complicated by difficulties in assessing what a child’s
interests are. Moreover there are other problems with the four principles
approach. Infancy, like adolescence, represents the most delicate season
of the existence of every human being, in the measure in which it can be
seen like that one critical existential situation of passage from the
indefinite contours and the uncertain contents through which it is passed
in order to arrive to the adult age. The child and the adolescent in fact
have not still caught up that one the psychical maturity and the
responsibility that are own of the new condition of adult. In this
dimension it makes the process of emancipation from the figures ancestral
celebrations explicit, than help from "greater" responsibilities the
child, then also he is educated to responsible actions, but like not
demanded the adult, than instead he chooses, he judges and he decides in
independent way. The separation and the removal from the ancestral
figures, that they grow with to the child, then imply inner uncertainty of
the own identity, uneasiness and marginalities, conflicts and anxiety. New
points of reference are attempted therefore, as an example, in the group
and in the friends and to the horizon the acquisition of a new one is
outlined ethos. This ethos, often, but not always, is inferior to that
enforced one in family. However there is of positive that already in
infancy is begun to acquire autonomy and responsibility in active way, or
better in first person [ 2 ]. The moral education is called to value these
new experiences and to sharpen a critical spirit of verification of the
ethos that it comes to it proposed. Then an educational role important is
given from ideal models in which the adolescent it tries to identify
itself. As ulterior positive data has the tendency to the search of a
specific and particular identity. Here the role of the bioethics and the
relative theoretical formulation assumes importance for the doctors and
for their role. Bioethics, in fact, plays an important role and has
remarkable implications on all those who operate in the field of
Pediatrics at all levels. The forma mentis and the modus operandi that
bioethics offers to each operator and educator will surely bring benefits
towards the prevention of illness and the general well-being of children
and adolescents, who will be tomorrow’s adults. In another paper[3], I
analyzed problems related to adolescence, such as corporeity, sexuality,
health and education, underlines the need to consider them from a
bioethical perspective. There and here among the various bioethical
approaches I support the importance of the Aristotelian-Thomistic virtues
theory. This ethical theory is highlighted and should be preferred when
dealing with the overall health, both physical and moral, of everyone and
especially of every children and adolescent.
References
1. Baines P, Medical ethics for children: applying the four principles to
paediatrics, J Med Ethics 2008; 34: 141-145. doi:10.1136/jme.2006.018747
2. Gatti G., Adolescenza, voce, Dizionario di Bioetica. Leone S, Privitera
S (Ed.) Acireale-Bologna: EDB-ISB; 1994
3. Soldini M, [Bioethics and adolescence. Reflections about corporeality,
sexuality, health, education], Ann Ist Super Sanita. 2004;40(3):373-7
In the recent article by Draper et al. the authors highlight the
increasingly difficult task of patient involvement in medical student
practical, technical and hands on learning (1).
The authors continue by suggesting that ALL patients should be willing to
provide practical experience for medical student learning. The suggestion
that a "new and more explicit agreement is needed" to perhaps strongly
support or perhaps enf...
In the recent article by Draper et al. the authors highlight the
increasingly difficult task of patient involvement in medical student
practical, technical and hands on learning (1).
The authors continue by suggesting that ALL patients should be willing to
provide practical experience for medical student learning. The suggestion
that a "new and more explicit agreement is needed" to perhaps strongly
support or perhaps enforce such a policy treads upon murky legal ground. I
could foresee consequences: 1) where a patient's rights to refuse to
participate may hinder their access to medical services at a teaching
hospital or 2) from a public policy viewpoint that if patients were given
the choice, they would refuse treatment and perhaps compromise the
training of medical students (2). The ethics of consent traverses between
training our future physicians and deceiving our patients.
1. Draper H,Ives J,Parle J,Ross N. Medical education and patients’
responsibilities: back to the future? J Med Ethics 2008; 34: 116-119
2. Williams CT, Fost N. Ethical considerations surrounding first time
procedures: a study and analysis of patient attitudes toward spinal taps
by students. Kennedy Inst Ethics J. 1992 Sep;2(3):217-31.
For a variety of reasons attempts to introduce commercial testing
services in Europe have so far proved rather unsuccessful. Currently,
testing for genetic disease or susceptibility is still mainly offered
through medical genetics departments in major university hospitals. In
this context, genetic testing is restricted to individuals who are
considered at (high) risk for this specific disorder and for whom the test
would...
For a variety of reasons attempts to introduce commercial testing
services in Europe have so far proved rather unsuccessful. Currently,
testing for genetic disease or susceptibility is still mainly offered
through medical genetics departments in major university hospitals. In
this context, genetic testing is restricted to individuals who are
considered at (high) risk for this specific disorder and for whom the test
would be medically indicated. (1)
Parrticularly in the United States, however, direct-to-consumer
genetic tests have been advertised and sold direct-to-consumer. Whether or
not European national legislation prohibits direct-to-consumer genetic
tests, the internet provides a framemork for an international market in
genetic services. Also non-U.S citizens can easily provide a mouth swab
that is then sealed in an envelope and mailed to the company for analysis.
Proponents have advanced that this evolution will increase individual
freedom and create greater consumer autonomy and empowerment, as well as
enhanced privacy of the information obtained. (2) However, this case shows
at least two problems that are related to the provision of direct-to-
consumer genetic services.
Firstly, direct-to-consumer genetic services cannot ensure that the
person who submits the saliva samples to the company for analysis is also
the person whose saliva samples are analysed. In this case, the patient’s
husband took a sample from his wife and sent it out for analysis. This
case shows that direct-to-comsumer genetic services cannot ensure that
samples are obtained unobtrusively and sent without consent to a
laboratory. Although one can argue that it cannot be the responsibility of
the laboratory to ensure this, it is clear that the provision of direct-to
-consumer services without the intervention of a health care professional
can increase the number of non-consensual testing. Legal protection
measures and punishments should be developed for the non-consensual or
deceitful obtaining and/or analysis of personal genetic information.
Secondly, when a genetic test is offered in usual clinical practice
adequate pretest and posttest counselling will be offered. This will
inform before the test the patient about the nature of the test and the
disease being tested for and will present eventually treatment options and
risk information. After the test counselling will help people to interpret
the information and to incorporate it in their personal and family lives.
Although direct-to-consumer companies mostly offer free counselling for
predictive genetic tests, there is no control on the quality of the
counselling. In this case, it became clear that if staff had not been
excluded from the process, predictive genetic testing might have been
considered through the UK NHS system. There was in this case even no need
to by-pass the health care professionals. That the person felt this need
to order a direct-to-consumer postal diagnosis of Huntington, might be
partly explained by the fact that the existing healthcare system (i.c. the
general practitioners) were not able to address this issue with the
concerned person. It is unclear what might have motivated this person for
such testing, except the fact that in one or another his concerns were not
adequately treated by healthcare professionals from the public healthcare
system. The fact that the healthcare professionals were not participating
in this process goes against the suggested code of practice: “Tests for
late onset disorders should not be supplied direct to the public. Any
medically qualified person requesting or providing genetic testing for
late onset disorders should ensure that they, or another suitably
qualified medical practitioners, are actively involved in the process.”(3)
The extent and nature of the impact of direct-to-consumer testing has
on genetic counsellling and people seeking genetic health information
still remains an open normative and empirical question. However, the
possibility that this approach to genetic testing will increase in the
future makes exploration of these issues relevant. Various questions will
needed to be answered: what is the quality and reliability of the genetic
tests that are offered directly?; what kind of information do individuals
receive when a test is carried out?; what is the clinical validity and
utility of the test?; how can the confidentiality of the personal data
obtained be guaranteed?; what are the implications of direct-to-consumer
services for the public healthcare system?; which regulations are needed
to protect the consumers?
Reference List
(1) Williams-Jones B. Re-framing the discussion: commercial genetic
testing in Canada. Health Law J 1999;7:49-67.
(2) Hudson K, Byers P, Burke W, Javitt G. ASHG Statement on Direct-
to-Consumer Genetic Testing in the United States. Am J Hum Genet
2007;81(3):635-7.
(3) Advisory Committee on Genetic Testing. Report on genetic testing
for late onset disorders. http://www.dh.gov.uk/Home/fs/en; 1998.
Gelbman and Gelbman argue correctly that, as currently used, "DNR" orders are confusing and could lead patients to have appropriate therapy withheld. Their suggestion that we use more transparent orders, such as "no chest compressions," merits consideration.
However, I disagree with their contention that defibrillation is not extraordinary or heroic. Unlike their other examples- intubation and vasoactive me...
This argument looks like a straw man to me and one framed with the golden aura of "ethics". Most modern medicine and healthcare is "life extension" and I don't see population control advocates suggesting modern medical practices be stopped. The exception might be IVF using some reasonable arguments that infertility is not a medical condition worthy of heroic, expensive, and/or insurance reimbursable efforts.
From...
In the article ‘Should we force the obese to diet?’, Giordano[1] drew similarities between the anorexics and the obese, suggesting that if people could accept it ‘ethical to force people to maintain “a proper diet” in the anorexics, there could also be similar justifications to force the obese to diet. There are problems with this premise. First of all, even though anorexia and obesity are both related to problems with e...
Modern genetics differs crucially from the old eugenics, despite the sad fact that they coexisted for few decades in the respected countries like Sweden and Canada, where thousands of coercive sterilizations of mentally ill were taking place until early 1970s (1). Fortunately, the focus has shifted in the meantime from the genetic health of the population to that of an individual, and even more importantly - individual...
Professor Bock's thorough determination of medically valid religious belief overlooked the role played by the physician's personally held beliefs. The physician population is not a monolithic science identity. For example, a specialist does not see the world the same as the general practitioner. Overly stereotypical, the oncologist assumes that the general practitioner just wants to comfort their patients rather than...
I thank David Hunter for his response to my ‘somewhat vitriolic attack on its central premises and conclusions’; and may I say that in the context of an informality of logic my overriding vitriolic or critical concern was with his arguments, and my conclusion is still that they are ineffective in serving his purpose.
There are some minor points of misunderstanding on Hunter’s part which may be helpful to conside...
The way to study the problem of coercion of Wertheimer and Miller,1 is certainly correct and arrive at a conclusion very acceptable: The offer of financial payment does not coerce because it cannot coerce.
They claim finally that the question as to when the offer of financial payment constitutes an undue inducement, is a topic that merits separate analysis.
However, we believe that the payment for research...
I agree with Baines [1] that there are difficulties with the application of the four principles approach to incompetent children. Baines says that the most important principle – respect for autonomy – is not directly applicable to incompetent children and the principle of beneficence is complicated by difficulties in assessing what a child’s interests are. Moreover there are other problems with the four principles appro...
In the recent article by Draper et al. the authors highlight the increasingly difficult task of patient involvement in medical student practical, technical and hands on learning (1). The authors continue by suggesting that ALL patients should be willing to provide practical experience for medical student learning. The suggestion that a "new and more explicit agreement is needed" to perhaps strongly support or perhaps enf...
For a variety of reasons attempts to introduce commercial testing services in Europe have so far proved rather unsuccessful. Currently, testing for genetic disease or susceptibility is still mainly offered through medical genetics departments in major university hospitals. In this context, genetic testing is restricted to individuals who are considered at (high) risk for this specific disorder and for whom the test would...
Pages