Mairi Levitt

A well placed trust?: Public perceptions of the governance of DNA databases

Biobanks that are run on an opt-in basis depend on people having the motivation to give and to trust in those who control their samples. Yet in the UK trust in the healthcare system has been in decline and there have been a number of health-related scandals that have received widespread media and public attention. Given this background, and the previous public consultations on UK Biobank, the paper explores the way people express their trust and mistrust in the area of medical and genetic information through discussions in six focus groups held in different areas of Britain. The themes that emerged in the discussion were the special character of genetic data; the ease with which information spreads; the public/private divide in genetic research; the potential of genetic information to harm people; choice, consent and lack of control; and the difficulty of establishing trustworthy governing arrangements. The expert agenda of policy-makers and medical ethics does not address the broader concerns expressed by participants. It seems that public consultation and the language of openness and transparency may not be sufficient to establish trust in the governance of genetic databases. Donors will be asked to give freely without any return but the participants’ perception of those using the samples is that they are motivated by success and profit rather than healthcare priorities. In this context altruism seems naive and even dangerous. In order to place their trust well people need evidence of a relationship with obligations and expectations on both sides.

Public Consultation in Bioethics. What's the Point of Asking the Public When They Have Neither Scientific Nor Ethical Expertise?

With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public(s) need to be equipped to deal with the choices that the new technologies will offer them, although this does not necessarily include a role for the public in influencing their development and regulation. This paper considers the methods and purpose of public consultations in the area of genetics including large-scale surveys of opinion, consensus conferences and focus groups. Consultation has been undertaken to enable the researchers/policy makers to see what the public do not know and plan more public education to make up the deficiency, to check on areas of concern so that public education can be used to address them or to gain a public mandate for a planned policy. An alternative and more recent approach is to find out what the public(s) do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use.

My genes made me do it? The implications of behavioural genetics for responsibility and blame.

The idea of individual responsibility for action is central to our conception of what it is to be a person. Behavioural genetic research may seem to call into question the idea of individual responsibility with possible implications for the criminal justice system. These implications will depend on the understandings of the various agencies and professional groups involved in responding to violent and anti-social behaviour, and, the result of negotiations between them over resulting practice. The paper considers two kinds of approaches to the question of responsibility and ‘criminal genes’ arising from a sociological and philosophical perspective respectively. One is to consider the social context and possible practical implications of research into ‘criminal genes’ which will later be examined through interviews and discussions with a range of experts including lawyers and social workers. A second and different kind of approach is to ask whether the findings of behavioural genetics ought to have implications for attributions of responsibility. Issues of genetic influence are central to both approaches.

The ethics and impact on behaviour of knowledge about one's own genome

“People need to know about their genes and be aware of diseases that may occur”; “the more information available the more informed choices are.” These positive comments on the value of genetic testing came from two visitors to a drop-in “gene shop” which gave information about genetics at Manchester airport, funded as part of the Euroscreen 2 project with staff from the Royal Manchester Children’s Hospital Trust. They were typical of the visitors who were enthusiastic about testing for themselves and their partners. The Genetic Interest Group, many of whose members come from families affected by genetic disorders, is similarly enthusiastic arguing that “genetic services offer people the potential to acquire information about their genetic make up [which] although it might be bad news, at least allows them to plan out their lives and make informed reproductive decisions.” For those who are aware that they are at risk, a genetic test for a specific disorder may well be empowering—it will provide either reassurance or confirmation of that risk. But what would knowledge of their own genetic make up mean for the general population?

Gene Week: a novel way of consulting the public

Within academic circles, the “deficit” model of public understanding of science has been subject to increasing critical scrutiny by those who favor more constructivist approaches. These suggest that “the public” can articulate sophisticated ideas about the social and ethical implications of science regardless of their level of technical knowledge. The seminal studies following constructivist approaches have generally involved small-scale qualitative investigations, which have minimized the pre-framing of issues to a greater or lesser extent. This article describes the Gene Week Project, sponsored by the Wellcome Trust, which attempted to extend this work to a large-scale consultation on genetics and health through the medium of a local daily newspaper. Readers were invited to respond to a set of open-ended questions that accompanied stimulus material published each day for five consecutive weekdays. The articles were written with the intention of extending the limited range of discourses around genetics and biotechnology that are usually presented by the popular media (hope, fear, tragedy and bravery). Responses raised overarching issues about the place of emerging health technologies in society reminiscent of previous open-ended consultations in this field. The paper ends with a critical discussion about the potential of this method to contribute to the further development of open-ended public consultations.

Genetic technology : a threat to deafness?

The Human Genome Project is providing information on the role of genes in all sorts of diseases and conditions and seems to offer the potential for unlimited medical benefits: to relieve human beings of the burden of genetic disease. The need for research into progressive, terminal diseases like Tay-Sachs and Huntington’s is obvious and sufferers and their families hope for a means of prevention and ultimately a cure. But as it becomes possible to detect a condition before birth questions are raised as to whether such tests should be carried out. Deafness is just one condition which cannot be assumed to be undesirable. Some deaf people consider themselves to be members of deaf culture, with its own language, customs and values and see genetic technology as a potential threat to their minority culture. Others, particularly those who become deaf in later life, would welcome any ‘cure’. This paper is in two parts; the first part looks at the likely outcomes of work in deaf genetics and their social impact. The second part examines the philosophical arguments surrounding genetic intervention in the case of deafness.

Relating to participants: how close do biobanks and donors really want to be?

Modern biobanks typically rely on the public to freely donate genetic data, undergo physical measurements and tests, allow access to medical records and give other personal information by questionnaire or interview. Given the demands on participants it is not surprising that there has been extensive public consultation even before biobanks in the UK and elsewhere began to recruit. This paper considers the different ways in which biobanks have attempted to engage and appeal to their publics and the reaction of potential and actual donors. Whilst those organising biobanks presumably want to be as close to their publics as they need to be in order to successfully recruit and sustain participation in sufficient numbers, the closer the relationship the more obligations and expectations there are on both sides.

Assisted Reproduction: Managing an Unruly Technology

Technology is “unruly” because it operates in a social context where it is shaped by institutions, organisations and individuals in ways not envisaged when it was first developed. In the UK assisted reproductive technology has developed from strictly circumscribed beginnings as a treatment for infertility within the NHS, to a service which is more often offered by commercial clinics and purchased by clients who are not necessarily infertile. The article considers the process by which assisted reproductive technology has been created and developed, a process which is ideological rather than technical, and the social implications of its ever expanding use. In a society where the discourse around reproduction and family life is one of choice and acceptance of diversity of life styles, the conditions are set for further “unruliness” supported by clinicians and commercial interests. The HFEA, public consultations and media coverage tend to subscribe to the way ethical issues are framed by those interested parties, an approach that favours increased liberalisation.

When Drug Treatment in the Elderly Is Not Cost Effective An Ethical Dilemma in An Environment of Healthcare Rationing

SummaryIn light of moves towards the view that rationing of healthcare resources is inevitable, the question arises as to whether age is a relevant consideration. To hold age as relevant in this context attracts the charge of agism; however, age may be related to some other characteristic(s) that are pertinent.In the context of drug treatment of the elderly, there is evidence to suggest that there are important differences between older and younger patients in terms of adverse responses to drugs because of factors such as physiological changes and multiple health problems, which occur with aging. On the other hand, some studies show beneficial effects of drug therapy.There is a need for more empirical data on cost effectiveness. Ethics arguably have to take into account factors other than cost effectiveness, such as equity. A central question is whether what is required is a set of criteria in addition to cost effectiveness, or an interpretation of cost effectiveness sensitive to broader considerations, such as quality of life (QOL). In relation to the latter, the issue of age-specific measurements of QOL remains problematic.

Could the organ shortage ever be met

The organ shortage is commonly presented as having a clear solution, increase the number of organs donated and the problem will be solved. In the light of the Northern Ireland Assembly’s consultation on moving to an opt-out organ donor register this article focusses on the social factors and complexities which impact strongly on both the supply of, and demand for, transplantable organs. Judging by the experience of other countries presumed consent systems may or may not increase donations but have not met demand. Donation rates have risen considerably in all parts of the UK recently but there is also an increasing demand for organs. Looking at international donation rates and attitudes, future demand for organs and education on donation, the question is whether the organ shortage could ever be met. The increase in longevity, in rates of diabetes and obesity and in alcohol related liver disease all contribute both to increased demand for transplants, and re-transplants, and a reduction in the number of usable organs. It is unlikely that demand could ever be met, since, if supply was unlimited, the focus would move to financial resources and competing demands on the health care budget in a publicly funded health system. These factors point to the need to focus on ways of reducing, or at least stabilizing, demand where lifestyle factors contribute to the underlying disease.