Forum

Ethics and cancer

Ian Olver

Ethical justifications in alcohol-related health warning discourses

Emma Muhlack, Jaklin Eliott, Drew Carter, Annette Braunack-Mayer

Cancer is the second most common cause of alcohol-related death in both men and women in Australia. In view of this and other health risks, mandatory health warnings on alcoholic beverages have been proposed in Australia and introduced elsewhere. This paper reviews academic literature and statements from selected advocacy groups to identify the ethical justifications that are used in relation to mandatory health warnings on alcoholic beverages. The paper then analyses how these justifications relate to the ethics of public health interventions in the context of cancer prevention. This involves examining the potential tension between the utilitarian nature of public health interventions and the liberalism characteristic of many of the societies in which those interventions occur.

Ethical aspects of cancer screening

Stacy M Carter

Screening for cancer or cancer risk is well-established in high-income countries. This article considers ethical aspects of cancer screening. Ethical evaluation of screening depends on a contested evidence base, interacts with people’s fear of cancer, and their enthusiasm for technology in general and screening in particular. Cancer screening is both a clinical and a public health activity, and so the often-conflicting frameworks from both clinical ethics and public health ethics are relevant to its evaluation. Cancer screening is an intrusion by health services into the lives of well individuals and so requires strong justification. Cancer screening can and should prevent harms to physical health, but its ability to do so is contingent on many factors and finely balanced; screening can also affect psychological wellbeing. When communicating about screening programs, care must be taken to support rather than undermine the autonomy of people considering participation. The benefit offered by cancer screening programs should be large enough to justify the opportunity costs of screening and the consequent cascade of intervention. Treatment should be offered in a way that avoids creating financial strain for individuals. Other relevant ethical issues include equity of opportunity and outcome in screening and accountability to communities. It is not clear how population-level and individual-level outcomes and interests in cancer screening should be balanced; future work should focus on resolving these difficult issues.

Big data in an Indigenous health context: opportunities and obstacles

Gail Garvey, Nikki Percival, Liz Izquierdo, David Moodie, Suzanne Moore

The ability of health researchers to unearth previously unsuspected health risks, trends and commonalities at a population level through matching information across different datasets is well attested. However, as more of this type of research is conducted, the spotlight is being shone on the barriers to accessing these data. Less well known are the complexities experienced by researchers working with datasets in an Aboriginal and Torres Strait Islander health context. We present the insights of a number of researchers, clinicians and public sector representatives who have extensive experience of data linkage in the Aboriginal and Torres Strait Islander health sector, on key issues and practical and ethical implications of utilising big datasets. Obstacles are further highlighted in the experiences of a national multicentre cancer cervical screening study. While researchers must at all times respect the individuals whose information is contained within these datasets, and abide by the legislative structures governing their use, measures to streamline data linkage processes are required. Realising the potential of existing health data that previously has not been available may underpin significant improvements in indigenous health and ultimately life expectancy.

Ethical issues arising in the use of genomics in cancer

Margaret Otlowski

This paper examines ethical issues in relation to genomics that arise in connection with their use in cancer, focusing primarily on the clinical context. The role of genomics in cancer is investigated through the lens of ‘personalised medicine’ or ‘precision medicine’, and the implementation of contemporary genomics into mainstream clinical practice. The paper explores the impact that ‘next generation sequencing’ (high throughput sequencing) is having, including whole genome sequencing, exome sequencing and the use of cancer panel testing. It also examines a number of ethical-legal issues which regularly arise in the context of next generation sequencing technologies, in particular: consent; privacy; management of clinical findings and results back; and the scope of a physician’s/doctor’s duty to a patient over time and whether there is a duty to recontact. This is an area where medical technology is rapidly developing and ethical, as well as legal principles need to be reassessed from time to time so we can recalibrate to take account of these advancements. While next generation sequencing holds remarkable potential, some caution in its deployment is warranted so that there is good preparedness for the outcomes. To this end, cancer panel tests appear to be a good compromise to address the clinical questions at hand while avoiding the problem of too much information.

Negotiating limits to the funding of high cost cancer medicines

Wendy Lipworth, Narcyz Ghinea, Ian Kerridge

The cost of pharmaceuticals is overwhelming health budgets around the world. A growing proportion of this burden stems from the ever-increasing demand for subsidisation of cancer medicines. Those making decisions about which cancer medicines should be subsidised are often criticised by patients, clinicians and the pharmaceutical industry for withholding life-saving treatments from patients in desperate need. While their arguments are emotionally compelling, these critics often fail to recognise the complexity of resource allocation decisions, and the challenges faced by those making such decisions. In this article we describe two of these challenges: 1) the need for decision-makers to balance their desire to rescue those in desperate need against their responsibility to consider population-level opportunity costs and to make decisions based on solid evidence of cost-effectiveness; and 2) their need to negotiate ‘fair’ prices for medicines when they lack negotiating power, and when prices seem to be more reflective of what the ‘market will bear’ than what the medicines are really ‘worth’. We conclude that, while there is no easy solution to these challenges, there is a need for greater transparency and procedural fairness, so that stakeholders are both more alert to the complexity of decisions about funding high cost cancer medicines, and more willing to accept the outcomes of these decisions.

What consent model is ethically justifiable in cancer population research?

Vicki Xafis

The important role that explicit informed consent plays in the conduct of research cannot be denied. Inhumane medical research has prompted over many decades the articulation of guidelines, legislation, and codes to ensure that research participants are protected from the harms inherent in some forms of research. However, there are now certain kinds of research, such as large epidemiological studies or data linkage studies, which offer potentially great benefits for whole populations but which, at the same time pose minimal, if any, harms to those included. These forms of research should not be required to adhere to the traditional informed consent requirements for the reasons articulated in this paper. The paper focuses on consent options for cancer population studies and examines the ethical issues associated with each model.

Ethical issues around phase I and phase III clinical trials in cancer

Martin HN Tattersall

The results of phase III (randomised) cancer clinical trials underpin evidence-based clinical practice. A standard comparator (control arm) is crucial so that the real value of an intervention can be tested. The goal of phase I trials is to assess the toxicity of a new drug and to determine the maximally tolerable dose to be recommended for subsequent studies to identify efficacy. Guidelines on informed consent intend to inform patients considering enrolment in clinical trials, but surveys of patients participating in cancer trials indicate that patient misunderstanding is common.

Current ethical issues in advanced cancer care

Lynn Gillam

Despite continuing advances in treatment, cancer continues to be a major cause of suffering and death, and so symptom management and end of life care will continue to be an important aspect of cancer care for the foreseeable future. An integral part of providing this care, for all clinicians involved, is understanding and managing the ethical dimensions of such care, and meeting the challenges of patient and public expectations – for relief of pain and other suffering, and for dignity and control at the time of death. This paper will highlight two aspects of care of patients with advanced cancer which are current, ethically contentious and need to be considered by all health professional working with these patients. These are medical use of cannabis and terminal sedation.

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