Peter Allmark | Sheffield Hallam University (original) (raw)

Papers by Peter Allmark

The article examines ethical challenges that arise with clinical lung cancer research focusing on... more The article examines ethical challenges that arise with clinical lung cancer research focusing
on design, recruitment, conduct and dissemination. Design: problems related to equipoise can arise in lung
cancer studies. Equipoise is an ethics precondition for RCTs and exists where there is insufficient evidence
to decide which of two or more treatments is best. Difficulties arise in deciding what level of uncertainty
constitutes equipoise and who should be in equipoise, for example, patients might not be even where
clinicians are. Patient and public involvement (PPI) can reduce but not remove the problems. Recruitment:
(I) lung cancer studies can be complex, making it difficult to obtain good quality consent. Some techniques
can help, such as continuous consent. But researchers should not expect consent to be the sole protection
for participants’ welfare. This protection is primarily done elsewhere in the research process, for example, in
ethics review; (II) the problem of desperate volunteers: some patients only consent to a trial because it gives
them a 50/50 option of the treatment they want and can be disappointed or upset if randomised to the other
arm. This is not necessarily unfair, given clinical equipoise. However, it should be avoided where possible,
for example, by using alternative trial designs; (III) the so-called problem of therapeutic misconception: this
is the idea that patients are mistaken if they enter trials believing this to be in their clinical best interest. We
argue the problem is misconceived and relates only to certain health systems. Conduct: lung cancer trials
face standard ethical challenges with regard to trial conduct. PPI could be used in decisions about criteria for
stopping rules. Dissemination: as in other trial areas, it is important that all results, including negative ones,
are reported. We argue also that the role of PPI with regard to dissemination is currently under-developed.

No abstract: editorial concerns justice and luck in relation to illness

Nursing Philosophy, Jan 1, 2010

In this paper, we consider three arguments for the irrelevance of the doctrine of double effect ... more In this paper, we consider three arguments for the irrelevance of the
doctrine of double effect in end-of-life decision making.The third argument
is our own and, to that extent, we seek to defend it. The first
argument is that end-of-life decisions do not in fact shorten lives and that
therefore there is no need for the doctrine in justification of these decisions.
We reject this argument; some end-of-life decisions clearly shorten
lives.The second is that the doctrine of double effect is not recognized in
UK law (and similar jurisdictions); therefore, clinicians cannot use it as
the basis for justification of their decisions. Against this we suggest that
while the doctrine might have dubious legal grounds, it could be of
relevance in some ways, e.g. in marking the boundary between acceptable
and unacceptable practice in relation to the clinician’s duty to
relieve pain and suffering. The third is that the doctrine is irrelevant
because it requires there to be a bad effect that needs justification. This
is not the case in end-of-life care for patients diagnosed as dying. Here,
bringing about a satisfactory dying process for a patient is a good effect,
not a bad one.What matters is that patients die without pain and suffering.
This marks a crucial departure from the double-effect doctrine; if the
patient’s death is not a bad effect then the doctrine is clearly irrelevant.
A diagnosis of dying allows clinicians to focus on good dying and not to
worry about whether their intervention affects the time of death. For a
patient diagnosed as dying, time of death is rarely important. In our
conclusion we suggest that acceptance of our argument might be problematic
for opponents of physician-assisted death.We suggest one way in
which these opponents might argue for a distinction between such practice
and palliative care; this relies on the double-effect doctrine’s distinction
between foresight and intention.

Public Health Ethics and Practice, Jan 1, 2010

FIVE the evaluation of public health education initiatives on smoking and lung cancer: an ethical... more FIVE the evaluation of public health education initiatives on smoking and lung cancer: an ethical critique Peter Allmark, Angela Tod and Jo Abbott The focus of this chapter is on ways in which public health information is communicated to the public. In particular it argues that the ...

Nursing standard, Jan 1, 2009

Myths have developed surrounding the law and ethical principles in end of life care, which can ma... more Myths have developed surrounding the law and ethical principles in end of life care, which can make care provision at the end of life complex and fraught with potential dilemmas. This article examines three of the most common myths related to the provision of palliative care and highlights their inadequacy when set against the ethical and legal principles on which end of life care pathways are based.

Objectives: To assess whether continuous consent, a process whereby information is given to resea... more Objectives: To assess whether continuous consent, a process whereby information is given to research participants at different stages in a trial, plus clinician training in that process was effective when used by clinicians gaining consent to the TOBY trial. The TOBY trial is a randomised controlled trial investigating the use of whole body cooling for neonates with evidence of perinatal asphyxia. Obtaining valid informed consent for TOBY is difficult; as such, it is a good test of the effectiveness of continuous consent.

Methods: Semi-structured interviews were conducted with 30 sets of parents who gave consent to TOBY and with 10 clinicians who sought it using the continuous consent process. Analysis focused on the validity of parental consent based upon the consent components of competence, information, understanding and voluntariness.

Results: 19/27 (70%) couples had no significant problems with consent validity at the point of signature. Problems lay mainly with the parents’ competence and understanding. Mothers particularly had competence problems in the early stages of consent. The understanding problems were primarily to do with side effects. Problems in both areas (competence and understanding) reduced markedly, particularly for mothers, in the post signature phase when further discussion took place. Randomisation was generally understood but unpopular. Clinicians did not always give information in stages during the short period of time available before parents gave consent. However, most clinicians were able to give follow up information.

Discussion: The consent validity compares favourably with similar trials examined in a comparable study (the Euricon study).

Conclusion: Researchers should consider adopting elements of the continuous consent process and clinician training in RCTs, particularly where they have concerns about the quality of consent they are likely to obtain using a conventional process.

Aim. This paper is a report of a study to identify factors influencing delay in reporting symptom... more Aim. This paper is a report of a study to identify factors influencing delay in reporting symptoms of lung cancer. Background. Lung cancer accounts for approximately 5% of deaths in the Western world. For up to 80% of patients, their disease is inoperable because it has been diagnosed too late. Method. This suggests that reducing diagnostic delay could reduce mortality. This qualitative study was conducted from July 2005 to May 2006 in community and hospital settings in the United Kingdom. A purposive sample of people diagnosed with lung cancer in the previous 6 months (n = 18), and two 18-month survivors took part in individual interviews. Findings. Participants reported a range of interrelating factors that influenced delay in reporting symptoms of lung cancer. Barriers to symptom reporting included symptom experience, lack of knowledge and fear. Blame and stigma because of smoking were also prevalent influences, as well as cultural factors, non-standard patterns of healthcare utilization and underlying stoical attitudes. The only factor to emerge as helpful in overcoming delay was the role families played. Conclusion. Lack of knowledge and awareness about lung cancer could be addressed by better education of the public. Social marketing is a way of developing education messages which tackle cultural influences on treatment-seeking delay. Nurses have a potential role in developing and disseminating those messages.

British Journal of Social …, Jan 1, 2009

This article explores the professional boundaries guidance for social workers. It presents resear... more This article explores the professional boundaries guidance for social workers. It presents research findings from the formal literature, from agency codes of practice, from telephone interviews with regulatory and professional bodies and from an exercise using ‘snowballing techniques’ in which informants responded to brief scenarios illustrating boundary dilemmas. The findings suggest that formal research plays little part in the guidance that individuals use to help them determine professional boundaries. Similarly, only 10–15 per cent of informants made regular reference to regulatory and professional codes of practice, with an even smaller percentage quoting specific sections from these codes. A slightly larger group (15–20 per cent) made fairly regular reference to their agency's policy documents. However, a clear majority relied on their own sense of what is appropriate or inappropriate, and made their judgements with no reference to any formal guidance. Agency guidance tended to ignore the ambiguous areas of practice and seemed to act as an insurance policy, brought out and dusted off when something goes awry. The authors caution against ever-increasing bullet points of advice and prescription, and advance a notion of ethical engagement in which professionals exercise their ethical senses through regular discussion of professional boundary dilemmas.

"Lay epidemiology" is a term used to describe the processes through which health risks are unders... more "Lay epidemiology" is a term used to describe the processes through which health risks are understood and interpreted by laypeople. It is seen as a barrier to public health when the public disbelieves or fails to act on public health messages. Two elements to lay epidemiology are proposed: (a) empirical beliefs about the nature of illness and (b) values about the place of health and risks to health in a good life. Both elements have to be dealt with by effective public health schemes or programmes, which would attempt to change the public's empirical beliefs and values. This is of concern, particularly in a context in which the lay voice is increasingly respected. Empirically, the scientific voice of standard epidemiology should be deferred to by the lay voice, provided a clear distinction exists between the measurement of risk, which is empirical, and its weighting, which is based on values. Turning to engagement with values, health is viewed to be an important value and is discussed and reflected on by most people. Public health professionals are therefore entitled and advised to participate in that process. This view is defended against some potential criticisms.

Journal of advanced nursing, Jan 1, 2005

Aim. The aim of this paper is to suggest that the study of ethics and ethical theories can enhanc... more Aim. The aim of this paper is to suggest that the study of ethics and ethical theories can enhance nursing practice. Discussion. Knowledge of ethical theories can be of practical use to nurses in at least three ways. First, it can help nurses uncover to what extent a problem is an ethical one. The questions faced in practice can be empirical, formal or philosophical. Very often, a practical decision requires us to tackle all three types. In the example of a 'Do not attempt resuscitation' order, deciding on whether such an order is appropriate requires us to answer empirical questions such as how likely any attempt is to achieve success. It also requires us to answer formal questions such as whether the law permits such an order in the present circumstance. Finally, it requires us to answer ethical/philosophical questions, such as how we should weigh up quality of life against quantity. Second, it can enable practitioners to develop skills and tools to tackle ethical/philosophical questions. In this paper I describe two such tools: Socratic questioning and Aristotelian dialectic. Third, it can help practitioners to develop the soundness of their ethical values and beliefs. All ethical reasoning requires us to use our values and beliefs, and attending to them enhances the quality of our reasoning. Conclusion. The study of ethics can enhance nursing practice.

Seminars in Fetal and Neonatal Medicine, Jan 1, 2007

Clinical trials in neonatology often raise complex ethical problems. This paper suggests that in ... more Clinical trials in neonatology often raise complex ethical problems. This paper suggests that in tackling these it is useful to identify and separate out those elements of the problem that are genuinely ethical (e.g. can I enter a child into a trial if I am not in personal equipoise?) from those that are empirical (e.g. what is the evidence for a treatment's effectiveness?) and those that are formal (e.g. what do codes or the law permit?) The genuinely ethical elements are examples of philosophical problems and must be tackled in a way appropriate to such problems. In practice this usually means some form of systematic argument. This is often frustrating to clinicians who are more used to the assuredness of empirical research. The paper next examines two ethical problems that arise frequently in neonatal trials. The first is equipoise and the related issue of recruiting parents who are not in equipoise because they strongly desire that their baby get the active treatment. We briefly defend the recruitment of such "desperate volunteers". The second is informed consent. We discuss the nature and value of informed consent and suggest that clinicians can often obtain worthwhile consent even in very difficult trials. The final section of the paper uses the example of clinical trials for brain injury to illustrate the difficulties.

Nursing standard, Jan 1, 2009

This article examines the permissions and approvals required for nurses and other health professi... more This article examines the permissions and approvals required for nurses and other health professionals to conduct research in the NHS in the U.K. today. A fictitious example of a research study conducted by a nurse who did not obtain NHS research ethics committee (REC) approval is provided. The current position regarding the REC approval process, including the role of ethics in research governance, is explored. The differences between research, audit and service evaluation are explained. Finally, the main ethical issues to be addressed in an application for REC approval are summarised.

Br J Nurs, Jan 1, 2002

Abortions in those under 16 years of age raise the issue of what to do in the face of a request t... more Abortions in those under 16 years of age raise the issue of what to do in the face of a request that the young person's parents not be involved. The first question in such cases is whether or not the young person is competent to request confidentiality. A younger person who is competent is owned the same duty of confidentiality as an adult. In practice this means that some such requests can be granted straightforwardly. However, in many cases the teenager's pregnancy raises concern about child abuse. In the face of a serious crime the obligation to respect confidentiality is overridden. This creates a dilemma. We cannot respect confidentiality fully in such cases, but a policy of failing to do so may lead young people to seek (illegitimate) help elsewhere. Therefore, reform of the current system may be needed.

Medicine, Health Care and Philosophy, Jan 1, 2005

Bayes’ rule shows how one might rationally change one’s beliefs in the light of evidence. It is t... more Bayes’ rule shows how one might rationally change one’s beliefs in the light of evidence. It is the foundation of a statistical method called Bayesianism. In health care research, Bayesianism has its advocates but the dominant statistical method is frequentism.

There are at least two important philosophical differences between these methods. First, Bayesianism takes a subjectivist view of probability (i.e. that probability scores are statements of subjective belief, not objective fact) whilst frequentism takes an objectivist view. Second, Bayesianism is explicitly inductive (i.e. it shows how we may induce views about the world based on partial data from it) whereas frequentism is at least compatible with non-inductive views of scientific method, particularly the critical realism of Popper.

Popper and others detail significant problems with induction. Frequentism’s apparent ability to avoid these, plus its ability to give a seemingly more scientific and objective take on probability, lies behind its philosophical appeal to health care researchers.

However, there are also significant problems with frequentism, particularly its inability to assign probability scores to single events. Popper thus proposed an alternative objectivist view of probability, called propensity theory, which he allies to a theory of corroboration; but this too has significant problems, in particular, it may not successfully avoid induction. If this is so then Bayesianism might be philosophically the strongest of the statistical approaches. The article sets out a number of its philosophical and methodological attractions. Finally, it outlines a way in which critical realism and Bayesianism might work together.

Research Ethics …, Jan 1, 2009

This paper reports a literature review on the topic of ethical issues in in-depth interviews. Th... more This paper reports a literature review on the topic of ethical issues in
in-depth interviews. The review returned three types of article:
general discussion, issues in particular studies, and studies of
interview-based research ethics. Whilst many of the issues discussed
in these articles are generic to research ethics, such as confidentiality,
they often had particular manifestations in this type of research. For
example, privacy was a significant problem as interviews sometimes
probe unexpected areas. For similar reasons, it is difficult to give full
information of the nature of a particular interview at the outset, hence
informed consent is problematic. Where a pair is interviewed (such as
carer and cared-for) there are major difficulties in maintaining
confidentiality and protecting privacy. The potential for interviews to
harm participants emotionally is noted in some papers, although this
is often set against potential therapeutic benefit. As well as these
generic issues, there are some ethical issues fairly specific to in-depth
interviews. The problem of dual role is noted in many papers. It can
take many forms: an interviewer might be nurse and researcher,
scientist and counsellor, or reporter and evangelist. There are other
specific issues such as taking sides in an interview, and protecting
vulnerable groups. Little specific study of the ethics of in-depth
interviews has taken place. However, that which has shows some
important findings. For example, one study shows participants are
not averse to discussing painful issues provided they feel the study is
worthwhile. Some papers make recommendations for researchers.
One such is that they should consider using a model of continuous (or
process) consent rather than viewing consent as occurring once, at
signature, prior to the interview. However, there is a need for further
study of this area, both philosophical and empirical. [291 words]

We will consider an Aristotelian account of individual autonomy. Individual autonomy is the capa... more We will consider an Aristotelian account of individual autonomy. Individual
autonomy is the capacity of the individual to make and act upon
judgments for which he is held morally accountable. This sense of
autonomy may be contrasted to a number of other senses. Of these, the
most important are political or legal autonomy and Kantian principled
autonomy. Political or legal autonomy concerns the environment in
which an individual operates. It exists where individuals are able to
operate reasonably freely.1 For the most part, we will not consider this
sense except insofar as it is necessary to explain the importance placed on
respecting individual autonomy. Kantian principled autonomy has been
described recently by Onora O’Neill in a series of writings.2 On this account,
autonomy is seen as a characteristic of the principle behind action
rather than of action per se and is not a characteristic of agents at all.

Twenty-First Century …, Jan 1, 2009

There is increasing recognition in the UK that social science research should generate an evidenc... more There is increasing recognition in the UK that social science research should generate an evidence base that reflects the ethnic diversity of the population and informs positive developments in public policy and programmes for all. However, describing and understanding ethnic diversity, and associated disadvantage, is far from straightforward. In practice, the ethical and scientific arguments around whether and how to incorporate ethnicity into policy-relevant social research are complex and contentious. In particular, untheorised or insensitive inclusion of data on ethnic 'groups' can have negative consequences. The present investigation begins to explore the extent to which social scientists have access to advice and guidance in this area of research. Specifically, the paper examines how ethnic diversity is explicitly or implicitly considered within the research ethics and scientific standard guidance provided by UK social science Learned Societies to their members. The review found little in the way of explicit attention to ethnic diversity in the guidance documents, but nevertheless identified a number of pertinent themes. The paper compiles and extrapolates these themes to present a tentative set of principles for social scientists to debate and further develop.

Randomised controlled trials (RCTs) sometimes recruit participants who are desperate to receive t... more Randomised controlled trials (RCTs) sometimes recruit participants who are desperate to receive the experimental treatment. Some claim this practice is unethical for at least three reasons. The first is that the notion of equipoise, which is often used as a justification for running a RCT, is subjective and value-based. Desperate volunteers are clearly not in equipoise and it is their values that should take precedence. The second is that clinicians who enter patients onto trials are disavowing their therapeutic obligation to deliver the best treatment to patients; they are following trial protocols rather than delivering individualised care. Research is not treatment; its ethical justification is different. Consent is crucial. This leads to the third reason: desperate volunteers do not give a proper consent; they are, in effect, coerced. We begin our reply by advocating a notion of equipoise based on, first, expert knowledge and, second, widely shared values. Where such collective, expert equipoise exists there is a prima facie case for a RCT. Next we argue that trial entry does not involve clinicians’ disavowing their therapeutic obligation; individualised care based on whims and fancies is not in patients’ best interest. Finally, we argue that where equipoise exists it is acceptable to limit access to experimental agents. In the cases desperate volunteers are not coerced because their desperation does not translate into a right to receive what they desire.

No abstract: editorial concerns justice and luck in relation to illness

Nursing Philosophy, Jan 1, 2010

Public Health Ethics and Practice, Jan 1, 2010

Nursing standard, Jan 1, 2009

Discussion: The consent validity compares favourably with similar trials examined in a comparable study (the Euricon study).

British Journal of Social …, Jan 1, 2009

Journal of advanced nursing, Jan 1, 2005

Seminars in Fetal and Neonatal Medicine, Jan 1, 2007

Nursing standard, Jan 1, 2009

Br J Nurs, Jan 1, 2002

Medicine, Health Care and Philosophy, Jan 1, 2005

Research Ethics …, Jan 1, 2009

Twenty-First Century …, Jan 1, 2009