Heather Widdows

Conceptualising Health: Insights from the Capability Approach

This paper suggests the adoption of a ‘capability approach’ to key concepts in healthcare. Recent developments in theoretical approaches to concepts such as ‘health’ and ‘disease’ are discussed, and a trend identified of thinking of health as a matter of having the capability to cope with life’s demands. This approach is contrasted with the WHO definition of health and Boorse’s biostatistical account. We outline the ‘capability approach’, which has become standard in development ethics and economics, and show how existing work in those areas can profitably be adapted to healthcare. Cases are used to illustrate the value of adopting a capability approach.

The right not to know: the case of psychiatric disorders

This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments for and against acquiring knowledge about the results of genetic testing for conditions such as breast cancer and Huntingtons disease, and examine whether similar considerations apply to disclosing to clients the results of genetic testing for psychiatric disorders such as depression and Alzheimers disease. The right not to know will also be examined in the context of the diagnosis of psychiatric disorders that are associated with stigma or for which there is no effective treatment.

Disparities in parenting criteria: an exploration of the issues, focusing on adoption and embryo donation

This paper examines the consistency of parent selection procedures, focusing on adoption and embryo donation. It outlines the current methods of selection and their disparities, and considers reasons for these disparities; namely, the intentionality of the parents, the gestational experience, and the technological imperative. This discussion is followed by an analysis of the ethical validity of these reasons, in terms of their consistency and how well they meet standards of equity and justice. The paper concludes that current approaches to parent selection are unsystematic and inadequate, and discusses the implications of this assessment.

Between the individual and the community: the impact of genetics on ethical models

This paper discusses how genetics is influencing ethical frameworks with particular focus on the effectiveness and appropriateness of individual and communal models. It suggests that genetics supports a relational understanding of the person and therefore that genetic ethics requires ethical models which respect both individuals and groups. First, the inadequacy of individualistic frameworks – at conceptual, ethical and practical levels – is outlined. Second, the “communal turn” in genetic ethics in both clinical and population ethics is considered. Third, it is claimed that this communal turn is applicable to genetic ethics in general and to illustrate this two further examples are explored: those of UK Biobank and personalized medicine. The paper concludes that ethical frameworks in genetic ethics must accommodate both group and individual concerns.

The ethics of biobanking: key issues and controversies

The ethics of biobanking is one of the most controversial issues in current bioethics and public health debates. For some, biobanks offer the possibility of unprecedented advances which will revolutionise research and improve the health of future generations. For others they are worrying repositories of personal information and tissue which will be used without sufficient respect for those from whom they came. Wherever one stands on this spectrum, from an ethics perspective biobanks are revolutionary. Traditional ethical safeguards of informed consent and confidentiality, for example, simply don’t work for the governance of biobanks and as a result new ethical structures are required. Thus it is not too great a claim to say that biobanks require a rethinking of our ethical assumptions and frameworks which we have applied generally to other issues in ethics. This paper maps the key challenges and controversies of biobanking ethics; it considers; informed consent (its problems in biobanking and possibilities of participants’ withdrawal), broad consent, the problems of confidentiality, ownership, property and comercialisation issues, feedback to participants and the ethics of re-contact.

The Governance of Genetic Information: Who Decides?

Introduction Heather Widdows and Caroline Mullen Section I. Problematising Governance of Genetic Information: 1. The medium and the message: tissue samples, genetic information and data protection legislation Neil C. Manson 2. Me, myself, I: against narcissism in the governance of genetic information Soren Holm 3. Decisions, consent and expectations of the individual Caroline Mullen Section II. Ethical Frameworks of Governance: 4. Constructing communal models of governance: collectives of individuals or distinct ethical loci? Heather Widdows 5. Rights, responsibility and stewardship: beyond consent Roger Brownsword 6. Who decides what? Relational ethics, genetics and well-being Sarah Wilson Section III. Redesigning Governance: 7. Involving publics in biobank governance: moving beyond existing approaches Kathryn G. Hunter and Graeme T. Laurie 8. Genetic information and public opinion Andrew Edgar 9. Harmonisation and standardisation in ethics and governance: Conceptual and practical challenges Ruth Chadwick and Heather Strange.

Conceptualising the Self in the Genetic Era

This paper addresses the impact of genetic advances and understandings on our concept of the self and the individual. In particular it focuses on conceptions of the ‘autonomous individual’ in the post-Enlightenment tradition and in bioethics. It considers the ascendancy of the autonomous individual as the model of the self and describes the erosion of substantial concepts of the self and the reduction of the self to “the will”—with the accompanying values of freedom, choice and autonomy. This conception of the self as an isolated, autonomous individual, characterised by acts of ‘will’ is then critiqued drawing on both theoretical sources, particularly the work of Iris Murdoch, and practical sources, namely the difficulties raised by genetics.

Altered images: understanding the influence of unrealistic images and beauty aspirations

In this paper we consider the impact of digitally altered images on individuals’ body satisfaction and beauty aspirations. Drawing on current psychological literature we consider interventions designed to increase knowledge about the ubiquity and unreality of digital images and, in the form of labelling, provide information to the consumer. Such interventions are intended to address the negative consequences of unrealistic beauty ideals. However, contrary to expectations, such initiatives may not be effective, especially in the long-term, and may even be counter-productive. We seek to understand this phenomenon of our continued aspiration for beauty ideals we know to be unreal and even impossible. We draw on our respective disciplines to offer psychological and philosophical accounts for why this might be. We conclude that beauty ideals are deeply embedded in our aspirations, practices, and in our constructions of ourselves. Given this, it is not surprising that simply increasing knowledge, or providing information, will be insufficient to challenge them.

A Global Public Goods Approach to the Health of Migrants

This paper explores a global public goods approach to the health of migrants. It suggests that this approach establishes that there are a number of health goods which must be provided to migrants not because these are theirs by right (although this may independently be the case), but because these goods are primary goods which fit the threefold criteria of global public goods. There are two key advantages to this approach: first, it is non-confrontational and non-oppositional, and second, it provides self-interested arguments to provide at least some health goods to migrants and thus appeals to those little moved by rights-based arguments.

Revising global theories of justice to include public goods

Our aim in this paper is to suggest that most current theories of global justice fail to adequately recognise the importance of global public goods. Broadly speaking, this failing can be attributed at least in part to the complexity of the global context, the individualistic focus of most theories of justice, and the localised nature of the theoretical foundations of most theories of global justice. We argue – using examples (particularly that of protecting antibiotic efficacy) – that any truly effective theory of global justice must recognise the importance of global public goods. Global public goods confer significant benefits to individuals yet can only be effectively promoted and preserved through collective action and the restriction of individual choice; something which most theories of justice are structurally unequipped to sufficiently promote.