Journal of Medical Ethics current issue

[The concise argument] The concise argument

Holm, S. — 2009-06-30

[Editorial] More than cautionary tales: the role of fiction in bioethics

Chan, S. — 2009-06-30

[Eyewitness] Eyewitness in Erewhon Academic Hospital

de Beaufort, I, Meulenberg, F — 2009-06-30

[Papers] HIV testing of junior doctors: exploring their experiences, perspectives and accounts

Salkeld, L R, McGeehan, S J, Chaudhuri, E, Kerslake, I M — 2009-06-30

Objective:

To explore the accounts and perspectives of junior doctors who were offered an HIV test by their employing National Health Service (NHS) trust and discuss ethical issues posed by this new policy.

Design:

Qualitative in-depth interview study.

Setting:

4 NHS hospital trusts.

Participants:

24 junior doctors who had been offered an HIV test as part of their pre-employment occupational health checks.

Results:

The manner in which HIV tests were offered to junior doctors varied both between and within the NHS trusts. Overall, the doctors were highly critical of the way the HIV test was offered. Recurrent themes surrounding a lack of discussion and information regarding the indications for the test and implications of a positive result influenced the the doctors’ perception of their experiences. As a consequence of the shortcomings of how the test was offered, most of the doctors held the misperception that HIV testing was mandatory and many felt unable to decline the test. The majority of doctors referred to patient protection as adequate justification for being offered an HIV test.

Conclusions:

Junior doctors offered an HIV test under new Department of Health occupational health guidance were disparaging about how the test was offered. The findings of this study affect thousands of junior doctors in the UK, and the impact of these results is extensive. Participants’ suggestions regarding how the process of offering an HIV test can be improved are discussed and ethical issues regarding the new Department of Health policy are highlighted.

[Papers] The ethics of the placebo in clinical practice revisited

Louhiala, P — 2009-06-30

Three recent empirical studies on the use of placebos and two papers arguing for the deliberate use of placebos in clinical practice are analysed. Empirical studies demonstrate that placebos are commonly used. The concept of the placebo is currently understood in different ways, many of which do not refer to inert substances or treatments. The papers arguing for the use of placebos are shown to fail to make their case.

[Papers] Reconsidering prenatal screening: an empirical-ethical approach to understand moral dilemmas as a question of personal preferences

Garcia, E, Timmermans, D R M, van Leeuwen, E — 2009-06-30

In contrast to most Western countries, routine offer of prenatal screening is considered problematic in the Netherlands. The main argument against offering it to every pregnant woman is that women would be brought into a moral dilemma when deciding whether to use screening or not. This paper explores whether the active offer of a prenatal screening test indeed confronts women with a moral dilemma. A qualitative study was developed, based on a randomised controlled trial that aimed to assess the decision-making process of women when confronted with a test offer. A sample of 59 women was interviewed about the different factors balanced in decision-making. Participants felt themselves caught between a need for knowledge and their unwillingness to take on responsibility. Conflict was reported between wishes, preferences and ethical views regarding parenthood; however, women did not seem to be caught in a choice between two or more ethical principles. Participants balanced the interests of the family against that of the fetus in line with their values and their personal circumstances. Therefore, we conclude that they are not so much faced with an ethical dilemma as conflicting interests. We propose that caregivers should provide the opportunity for the woman to discuss her wishes and doubts to facilitate her decision. This approach would help women to assess the meaning of testing within their parental duties towards their unborn child and their current offspring.

[Papers] Bone marrow transplantation in the prevention of intellectual disability due to inherited metabolic disease: ethical issues

Louhiala, P — 2009-06-30

Many inherited metabolic diseases may lead to varying degrees of brain damage and thus also to intellectual disability. Bone marrow transplantation (BMT) has been used for over two decades as a form of secondary prevention to stop or reverse the progress of the disease process in some of these conditions. At the population level the impact of BMT on the prevalence of intellectual disability is minute, but at the individual level its impact on the prognosis of the disease and the well-being of the patient can be substantial. The dark side of BMT use is the burden of side effects, complications and transplantation-related mortality in less successful cases. The ethical issues involved in this therapy are discussed in this review.

[Papers] Understanding respect: learning from patients

Dickert, N W, Kass, N E — 2009-06-30

Background:

The importance of respecting patients and participants in clinical research is widely recognised. However, what it means to respect persons beyond recognising them as autonomous is unclear, and little is known about what patients find to be respectful.

Objective:

To understand patients’ conceptions of respect and what it means to be respected by medical providers.

Design:

Qualitative study from an academic cardiology clinic, using semistructured interviews with 18 survivors of sudden cardiac death.

Results:

Patients believed that respecting persons incorporates the following major elements: empathy, care, autonomy, provision of information, recognition of individuality, dignity and attention to needs.

Conclusions:

Making patients feel respected, or valued as a person, is a multi-faceted task that involves more than recognising autonomy. While patients’ views of respect do not determine what respect means, these patients expressed important intuitions that may be of substantial conceptual relevance.

[Papers] Exploring morally relevant issues facing families in their decisions to monitor the health-related behaviours of loved ones

Gammon, D, Christiansen, E K, Wynn, R — 2009-06-30

Patient self-management of disease is increasingly supported by technologies that can monitor a wide range of behavioural and biomedical parameters. Incorporated into everyday devices such as cell phones and clothes, these technologies become integral to the psychosocial aspects of everyday life. Many technologies are likely to be marketed directly to families with ill members, and families may enlist the support of clinicians in shaping use. Current ethical frameworks are mainly conceptualised from the perspective of caregivers, researchers, developers and regulators in order to ensure the ethics of their own practices. This paper focuses on families as autonomous decision-makers outside the regulated context of healthcare. We discuss some morally relevant issues facing families in their decisions to monitor the health-related behaviours of loved ones. An example – remote parental monitoring of adolescent blood glucose – is presented and discussed through the lens of two contrasting accounts of ethics; one reflecting the predominant focus on health outcomes within the health technology assessment (HTA) framework and the other that attends to the broader sociocultural contexts shaping technologies and their implications. Issues discussed include the focus of assessments, informed consent and child assent, and family co-creation of system characteristics and implications. The parents’ decisions to remotely monitor their child has relational implications that are likely to influence conflict levels and thus also health outcomes. Current efforts to better integrate outcome assessments with social and ethical assessments are particularly relevant for informed decision-making about health monitoring technologies in families.

[Papers] Is all fair in biological warfare? The controversy over genetically engineered biological weapons

Appel, J M — 2009-06-30

Advances in genetics may soon make possible the development of ethnic bioweapons that target specific ethnic or racial groups based upon genetic markers. While occasional published reports of such research generate public outrage, little has been written about the ethical distinction (if any) between the development of such weapons and ethnically neutral bioweapons. The purpose of this paper is to launch a debate on the subject of ethnic bioweapons before they become a scientific reality.

[Papers] Genetic enhancements and expectations

Sorensen, K — 2009-06-30

Some argue that genetic enhancements and environmental enhancements are not importantly different: environmental enhancements such as private schools and chess lessons are simply the old-school way to have a designer baby. I argue that there is an important distinction between the two practices—a distinction that makes state restrictions on genetic enhancements more justifiable than state restrictions on environmental enhancements. The difference is that parents have no settled expectations about genetic enhancements.

[Papers] Belgian euthanasia law: a critical analysis

Cohen-Almagor, R — 2009-06-30

Some background information about the context of euthanasia in Belgium is presented, and Belgian law on euthanasia and concerns about the law are discussed. Suggestions as to how to improve the Belgian law and practice of euthanasia are made, and Belgian legislators and medical establishment are urged to reflect and ponder so as to prevent potential abuse.

[Papers] Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer

Koffman, J, Morgan, M, Edmonds, P, Speck, P, Higginson, I J — 2009-06-30

Introduction:

Vulnerability is a poorly understood concept in research ethics, often aligned to autonomy and consent. A recent addition to the literature represents a taxonomy of vulnerability developed by Kipnis, but this refers to the conduct of clinical trials rather than qualitative research, which may raise different issues.

Aim:

To examine issues of vulnerability in cancer and palliative care research obtained through qualitative interviews.

Method:

Secondary analysis of qualitative data from 26 black Caribbean and 19 white British patients with advanced cancer.

Results:

Four domains of vulnerability derived from Kipnis’s taxonomy were identified and included: (i) communicative vulnerability, represented by participants impaired in their ability to communicate because of distressing symptoms; (ii) institutional vulnerability, which referred to participants who existed under the authority of others—for example, in hospital; (iii) deferential vulnerability, which included participants who were subject to the informal authority or the independent interests of others; (iv) medical vulnerability, which referred to participants with distressing medical conditions; and (v) social vulnerability, which included participants considered to belong to an undervalued social group. Participants from both ethnic groups populated all these domains, but those who were black Caribbean were more present among the socially vulnerable.

Conclusions:

Current classifications of vulnerability require reinterpretation when applied to qualitative research at the end of life. We recommend that researchers and research ethics committees reconceptualise vulnerability using the domains identified in this study and consider the research context and interviewers’ skills.

[Papers] Limits to research risks

Miller, F G, Joffe, S — 2009-06-30

Risk–benefit assessment is a routine requirement for research ethics committees that review and oversee biomedical research with human subjects. Nevertheless, it remains unclear how to weigh and balance risks to research participants against the social benefits that flow from generating biomedical knowledge. In this article, we address the question of whether there are any reasonable criteria for defining the limit of permissible risks to individuals who provide informed consent for research participation. We argue against any a priori limit to permissible research risks. However, attention to the uncertainty of potential social benefit that can be derived from any particular study warrants caution in exposing prospective research participants to a substantial likelihood of serious harm.

[Papers] Split views among parents regarding children's right to decide about participation in research: a questionnaire survey

Swartling, U, Helgesson, G, Hansson, M G, Ludvigsson, J — 2009-06-30

Based on extensive questionnaire data, this paper focuses on parents’ views about children’s right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.

[Response] To kill is not the same as to let die: a reply to Coggon

McLachlan, H V — 2009-06-30

Coggon’s remarks on a previous paper on active and passive euthanasia elicit a clarification and an elaboration of the argument in support of the claim that there is a moral difference between killing and letting die. The relevant moral duties are different in nature, strength and content. Moreover, not all people who are involved in the relevant situations have the same moral duties. The particular case that is presented in support of the claim that to kill is not the same as to let die is based upon a rejection of consequentialism.

[Ethics briefings] Ethics briefings

Chrispin, E, English, V, Sheather, J, Sommerville, A — 2009-06-30