Sara Fovargue

Warning: Health 'choices' can kill.

The White Paper Valuing People: A New Strategy for Learning Disability for the 21st Century, is shaped by the principles of Legal and Civil Rights, Independence, Choice and Inclusion. These principles are laudable, but this paper argues that in matters of health that are not within the experiences of adults with learning disabilities, a duty of care should override the elusive mantra of ‘choice’.

How much information is 'enough'?

In our first Five-Minute Focus on Law, we explore a question that lawyers are routinely asked by health-care practitioners: when seeking informed consent from patients, how much information about risks should be given? Interestingly, while health-care practitioners are rightly concerned with disclosing information on both the risks and benefits of a given procedure, to date the decided case law has focused solely on the issue of risks. It is this issue that we consider here.

WHEN SHOULD PRECAUTION PREVAIL? INTERESTS IN (PUBLIC) HEALTH, THE RISK OF HARM AND XENOTRANSPLANTATION

Xenotransplantation is an example of a developing biotechnology which highlights three differing interests in the health of the public; a specific interest in enhancing the health of individuals who require a particular procedure or treatment, a wider interest in protecting the health of us all by avoiding introducing biotechnologies which risk the health of the public, and a public interest in advancing medical knowledge and treatment. Here we explore how matters of private benefit and public risk can be appropriately reconciled and consider whether ideas of public health should take a more central role when deciding whether clinical xenotransplantation should proceed. The risks of xenotransplantation are not certain but the nature of the harm to individual and public health could be severe. The concept of risk is central to our analysis as xenotransplantation threatens potential future harm as well as possible benefit. We argue that it is sometimes legally and ethically necessary for the state to act in advance to protect the health of the public, and that xenotransplantation is such a case. In reaching this conclusion we adopt a precautionary approach; an approach which we modify by Mill’s harm principle.

Conscience and agent-integrity : a defence of conscience-based exemptions in the health care context

The issue of conscientious refusal by health care practitioners continues to attract attention from academics, and was the subject of a recent UK Supreme Court decision. Activism aimed at changing abortion law and the decision to devolve governance of abortion law to the Scottish Parliament both raise the prospect of altered provision for conscience in domestic law. In this article, building on earlier work, we argue that conscience is fundamentally connected to moral integrity and essential to the proper functioning of moral agency. We examine recent attempts to undermine the view of conscience as a matter of integrity and argue that these have been unsuccessful. With our view of conscience as a prerequisite for moral integrity and agency established and defended, we then take issue with the ‘incompatibility thesis’ (the claim that protection for conscience is incompatible with the professional obligations of healthcare practitioners). We reject each of the alternative premises on which the incompatibility thesis might rest, and challenge the assumption of a public/private divide which is entailed by all versions of the thesis. Finally, we raise concerns about the apparent blindness of the thesis to issues of power and privilege, and conclude that conscience merits robust protection.

Does the theoretical framework change the legal end result for mature minors refusing medical treatment or creating self-generated pornography?

The status that is and should be afforded to decisions made by those under 18 has been much debated, particularly in the context of health care. Ideas of rights, autonomy and the concept of best interests have been explored, and there appears to be an underlying concern that if minors are recognised as ‘fully’ autonomous individuals with legally enforceable rights, then this would conflict with the best interests (welfare) principle as espoused in the Children Act 1989. Similar concerns are identifiable with regards to provisions designed to protect children from sexual exploitation, which are largely framed around protection rather than rights. Concepts of vulnerability and exploitation are predominant in this context, making it easier to perceive minors as being in need of protection rather than as individuals with autonomy deserving of respect. In this article, we consider some of the concerns raised and expose the tensions that surround the decision-making (cap)ability of mature minors (those aged 16 and 17), and the implications for these adolescents. We explore whether the dominant paradigms of best interests and protectionism limit English law’s recognition of mature minors’ autonomy in two situations; refusing treatment and creating self-generated pornography. We thus test whether a ‘liberal’ position of recognising mature minors’ autonomy can be maintained in the face of potential harm to them.

The (Ab)use of Those with No Other Hope? Ethical and Legal Safeguards for Recipients of Experimental Procedures

The idea that all members of a society have a duty to help promote scientific and medical advances has been the subject of debate, 1 and it has recently been suggested that patients should be able to participate in ‘‘research that may be beyond the bounds of current clinical research practice’’ and that ‘‘even when greater-than-usual risks may be present, such research can be both ethically and scientifically justified.’’ 2 This is partly based on the argument that all of us are obliged to participate in research and that where there is ‘‘some reasonable likelihood [of] a beneficial effect’’ it is appropriate for ‘‘‘risky’ research’’ to proceed. 3 Here I do not dispute this contention but draw attention to some of the issues that are raised by involving those with no other hope in experimental procedures. These are important because of the position—desperately ill with no alternatives—such patients are in. The UK’s Nuffield Council on Bioethics has recognized that medical progress has sometimes been made at the ‘‘expense’’ of those who first received a new procedure, and that ‘‘[i]n some cases, it has been cruel to offer a possible life-saving procedure that resulted in a long drawn-out painful death, instead of a relatively peaceful end. The offer of such a procedure in itself puts pressure on patients to accept—and may distort judgement.’’ 4 I am not arguing that there should be a blanket ban on involving those with no other hope in experimental procedures; rather, I argue that, if they are to be involved, then they must be legally protected and that the use of such procedures is scientifically justified and ethically reviewed. In this article I examine international and national ethical and professional guidance on offering experimental procedures to those with no other hope and explore the common law on experimental procedures in England and Wales. The issues highlighted here are not jurisdiction specific; rather, the regulatory framework in England and Wales is used as a lens through which to explore and highlight the protection offered to those with no other hope. In so doing I question whether the existing regulatory structures appropriately protect those with no other hope and draw on ethical guidance from New Zealand that suggests ways to proceed. Care must be taken with involving such patients in experimental procedures because they may be particularly vulnerable and open to exploitation, even if this is not the deliberate or conscious aim of those seeking to perform the procedure for the first time. Despite this risk, selection issues in this context have rarely been considered. This may be because their involvement has been assumed This article is dedicated to Professor David Price, who was an inspirational and supportive academic, colleague, and mentor.

Xenotransplantation and risk : regulating a developing biotechnology

Some developing biotechnologies challenge accepted legal and ethical norms because of the risks they pose. Xenotransplantation (cross-species transplantation) may prolong life but may also harm the xeno-recipient and the public due to its potential to transmit infectious diseases. These transboundary diseases emphasise the global nature of advances in health care and highlight the difficulties of identifying, monitoring and regulating such risks and thereby protecting individual and public health. Xenotransplantation raises questions about how uncertainty and risk are understood and accepted, and exposes tensions between private benefit and public health. Where public health is at risk, a precautionary approach informed by the harm principle supports prioritising the latter, but the issues raised by genetically engineered solid organ xenotransplants have not, as yet, been sufficiently discussed. This must occur prior to their clinical introduction because of the necessary changes to accepted norms which are needed to appropriately safeguard individual and public health.

A plea for precaution with public health: the xenotransplantation example

In this paper we argue that while individual private interests such as autonomy and the need for a medical procedure or treatment are important in the provision and delivery of health care and the utilization of biotechnologies, these concepts need to be balanced with other interests such that in certain situations they do not take priority. We use as an example a particular developing biotechnology, xenotransplantation, to suggest that interest in the health of the public is such that this biotechnology should not be permitted to move to the clinical trial stage because of the particular risk of harm it poses to the potential xeno-recipient, their close contacts and the wider population. This is despite the interest of those in need of a transplant in allowing such clinical trials to proceed. We derive support for our position from John Stuart Mills harm principle.