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. (shrink)

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. (shrink)

With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public 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 do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use. (shrink)

New genetic technologies promise to generate valuable insights into the aetiology of several psychiatric conditions, as well as a wider range of human and animal behaviours. Advances in the neurosciences and the application of new brain imaging techniques offer a way of integrating DNA analysis with studies that are looking at other biological markers of behaviour. While candidate 'genes for' certain conditions, including schizophrenia and bipolar disorders, are said to be 'un-discovered' at a faster rate than they are discovered, many (...) studies are being conducted on personality traits such as aggressiveness and anti-social traits. The clinical applicability and implications of these studies are often discussed within the scientific community. However, little attention has so far been paid to their possible policy implications in relation to criminality management and to Criminal Law itself. Similarly, the related ethical issues arising in the field of crime control, and the tensions between enhancing security for society and protecting civil liberties, are currently under-explored. This paper investigates these ethical issues by focusing on the views of those professionals – including judges, lawyers, probation officers and social workers – who work with individuals 'deemed at risk' of violent and aggressive behaviours. It also discusses and problematizes mainstream rhetoric and arguments around the notion of 'risky individuals'. (shrink)

This volume contains essays which cover a range of aspects in the debate over genetic testing. It looks at both the advantages and disadvantages involved in knowing or not knowing whether one is a carrier of certain genetic traits.

Objectives—The development of predictive genetic tests provides a new area where consumers can gain knowledge of their health status and commercial opportunities. “Over-the-counter” or mail order genetic tests are most likely to provide information on carrier status or the risk of developing a multifactorial disease. The paper considers the social and ethical implications of individuals purchasing genetic tests and whether genetic information is different from other types of health information which individuals can obtain for themselves.Design—The discussion is illustrated by findings (...) from a questionnaire survey of university students as potential consumers. Topics covered included what health tests they had already used, expectations of genetic tests, willingness to pay, who should have access to the results and whether there need to be restrictions on such tests.Sample—Six hundred and fifteen first-year students in the universities of Leuven, Cardiff, Central Lancashire, Vienna and Nijmegen studying either medicine or a non-science subject.Results—Students were enthusiastic about genetic tests and had high expectations of their accuracy and usefulness but most thought they should be available through the health service and a minority thought that some tests, for example for sex selection, should not be available at all. There were few differences in responses by sex or subject of study but some by country. The paper also considers ethical and social issues outside the scope of a questionnaire survey of this type.Conclusion—To address some of these issues the sale of genetic tests to individuals can be made subject to ethical guidelines or codes of practice, for example to protect vulnerable groups, but there are fundamental social and ethical questions which such guidelines cannot address. (shrink)

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. (shrink)

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. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers (...) the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

As the technosciences, including genomics, develop into a global phenomenon, the question inevitably emerges whether and to what extent bioethics can and should become a globalised phenomenon as well. Could we somehow articulate a set of core principles or values that ought to be respected worldwide and that could serve as a universal guide or blueprint for bioethical regulations for embedding biotechnologies in various countries? This article considers one universal declaration, the UNESCO Declaration on Bioethics and Human Rights ( 2005a (...) ). General criticisms made in a recent special issue of Developing World Bioethics are that the concepts used in the Declaration are too general and vague to generate real commitment; that the so-called universal values are not universal; and, that UNESCO should not be engaged in producing such declarations which are the domain of professional bioethicists. This article considers these and other criticisms in detail and presents an example of an event in which the Declaration was used: the request by the Republic of Sakha, in Siberia, for a UNESCO delegation to advise on the initiation of a bioethics programme. The Declaration was intended to provide an adequate “framework of principles and procedures to guide states in the formulation of their legislation, policies and other instruments in the field of bioethics” (article 2a). The Declaration was produced, and principles agreed upon, in an interactive and deliberative manner with world-wide expert participation. We argue that the key issue is not whether the general principles can be exported worldwide (in principle they can), but rather how processes of implementation and institutionalisation should take shape in different social and cultural contexts. In particular, broader publics are not routinely involved in bioethical debate and policy-making processes worldwide. (shrink)

Introduction: This article discusses ethical, legal and social issues raised by the collection, storage and use of DNA in forensic databases. Review: The largest and most inclusive forensic database in the world, the UK National DNA database, leads the worldwide trend towards greater inclusivity. The performance of the NDNAD, criteria for inclusion, legislative framework and plans for integrating forensic databases across Europe are discussed. Comparisons are drawn with UK biobank that has started collecting DNA samples linked to medical records and, (...) unlike the NDNAD, requires informed consent from volunteers, allows withdrawal of samples and only includes adults. The potential uses of research into genes associated with violent and ‘antisocial’ behaviour are discussed in the context of an increasing degree of surveillance in the UK. Conclusion: It should not be assumed that the benefits of forensic databases will necessarily override the social and ethical costs, regardless of changes to the criteria for inclusion or the permitted uses of samples and profiles. The expansion of forensic databases raises issues of relevance to the medical profession. (shrink)

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. (shrink)

Trying to separate out nature and nurture as explanations for behaviour, as in classic genetic studies of twins and families, is now said to be both impossible and unproductive. In practice the nature-nurture model persists as a way of framing discussion on the causes of behaviour in genetic research papers, as well as in the media and lay debate. Social and environmental theories of crime have been dominant in criminology and in public policy while biological theories have been seen as (...) outdated and discredited. Recently, research into genetic variations associated with aggressive and antisocial behaviour has received more attention in the media. This paper explores ideas on the role of nature and nurture in violent and antisocial behaviour through interviews and open-ended questionnaires among lay publics. There was general agreement that everybody’s behaviour is influenced to varying degrees by both genetic and environmental factors but deterministic accounts of causation, except in exceptional circumstances, were rejected. Only an emphasis on nature was seen as dangerous in its consequences, for society and for individuals themselves. Whereas academic researchers approach the debate from their disciplinary perspectives which may or may not engage with practical and policy issues, the key issue for the public was what sort of explanations of behaviour will lead to the best outcomes for all concerned. (shrink)

Ethical issues surrounding research are complex and multifaceted. There are issues concerning: the methods used, the intended purpose, the foreseen and unforeseen effects, the use and dissemination of findings, and, not least, what is and what fails to be researched. - In this article we break down the issues into two main categories: (I) how the research itself is done; and (II) how it is determined by and in turn affects a wider context. In the first section we discuss familiar (...) issues such as the need for methodologically sound investigation, appropriate protections for the human subjects of research, as well as issues arising in collaborative research. The second set of issues is less well investigated and, indeed, particularly difficult to address; these are issues that extend well beyond the control of the researcher(s) or, quite often, any one individual or organization. We discuss the selection of research topics, research funding, publication and, finally, the role of external ethical guidelines and their institutional setting. (shrink)

For the legal system to function effectively people are generally viewed as autonomous actors able to exercise choice and responsible for their actions. It is conceivable that genetic traits associated with violent and antisocial behaviour could call into question an affected individual’s responsibility for acts of criminal violence. Evidence concerning genes associated with violent and antisocial behaviour has been introduced in criminal courts in USA and Italy, either alone or with associated environmental factors. One example of a ‘genetic defence’ is (...) based on low levels of monoamine oxidase A activity, with a prevalence of around thirty percent in Caucasian males. In countries with trial by jury it is particularly relevant to consider the views of publics on criminal liability and the significance they assign to evidence citing genetic influences on behaviour. This article draws on largely qualitative research looking at participants’ explanations of, and assigning of responsibility for, violent and antisocial behaviour where environmental or genetic influences are claimed. Genetic factors were not viewed deterministically by participants but were considered by most to be irrelevant to personal responsibility. Notions of human agency, free will and choice were crucial to explanations of problem behaviours and ensured that offenders could be held responsible despite evidence on environmental and genetic factors. (shrink)

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. 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. (shrink)

Much of the current genetic research into aggressive and violent behaviour focuses on young people and might appear to offer the hope of targeted prediction and intervention. In the UK data is collected on children from various agencies and collated to produce ‘at risk of offending’ identities used to justify intervention. Information from behavioural genetic tests could conceivably be included. Regulatory frameworks for collecting, storing and using information from DNA samples differ between the health service and the police particularly in (...) the need for consent and the treatment of children. This paper draws on discussions with professionals involved with ‘problem’ young people to consider their views on the utility of genetic research for tackling violent/aggressive behaviour and the impact an identification of genetic susceptibility might have on their clients. (shrink)

The last 10 years has seen the development and deployment of new biotechnologies not just as potential treatments but also as potential enhancements. The definition and differentiation of treatment from enhancement is an ongoing clinical, ethical and social debate that ranges across a proliferating number of convergent technologies. Many of these innovations will ‘come-on-line’ as present generations of young people will be reaching adulthood and considering parenthood. This paper reports on a project that explored the possibilities for human enhancement with (...) young people in order to gather their attitudes towards enhancement and the types of arguments/reasoning they employ when thinking about the possibilities and the techniques. The project focused on if/how distinctions are made between treatment and enhancement, between the different techniques that might be used for enhancement and perceptions of risks and benefits. The young people’s viewpoints, their methods of reasoning and underlying values are compared with those of bioethicists writing on the topic. (shrink)

Empirical research with young people in Finland, Germany, Spain and Britain was carried out as part of the BIOCULT project funded by the European Union. The project focused on their attitudes to biotechnology and, in particular, the formation of arguments about risk and safety. This paper looks at the responses of 14–18 year olds to a story about the so called anti-obesity gene, in the form of advice to a friend who is taking it. The majority advised against taking it (...) with some differences by gender and country. Most reservations were on grounds of safety and the feeling that ‘natural’ ways to lose weight are better: A minority questioned the idea of striving for a ‘perfect’ body. The types of arguments used by the young people reveal underlying perspectives on the place of human beings in the world and whether they have a right to manipulate nature and their own bodies. (shrink)

Are sociologists always critical about genetics? Are philosophers always more supportive? This is the impression of many sociologists in the United Kingdom who argue that contemporary British philosophers criticise genetic technologies and applications in ways that scientists and medical doctors can deal with. They emphasise matters like informed consent, but pay less or no attention to the wider social consequences of technologies, practices and policies. Philosophers in their turn may see sociologists as irrationally hostile to science and medical practice. Some (...) of them refuse to criticise genetics, arguing that there is nothing to criticise. Others feel that their criticisms are in fact more accurate than the concerns raised by sociologists. And yet others point out that the impression of uncritical support can only be true of a certain specific group. Philosophers have so many internal disagreements among themselves that the generalisation can hardly be justified. In this paper an attempt is made by a sociologist and a philosopher to understand how sociological and philosophical perspectives on bioethics may differ in discussions about genetics. The paper, which proceeds in dialogue form, is based on our email correspondence on the advantages and disadvantages of genetic technologies and their applications, and on the idea of social consequences as understood by scholars from two different disciplines. (shrink)

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. (shrink)

Despite the recent increased emphasis on ethics in health care, the subject of community health care is rarely specifically addressed. Yet it is in the community that many ethical issues arise, both in the particular practice situation and in the wider social issues connected with changes in government policy. This edited text discusses these questions and looks at the whole range of community health nursing in the UK. The multidisciplinary group of contributors explore the issues of theory and practice that (...) arise in community health care. They encourage critical reflection on the differences between hospital-based care and community care. Everyday issues are addressed that confront health practitioners working in the community, such as discrimination, mental health, standard setting, rationing in health care, public health, health promotion and discharge decision making. This book will be essential reading for practitioners on post-registration courses in community health and students following courses in health care ethics and nursing studies. (shrink)

Analysis and comparison of genetic screening programs shows that the extent of development of programs varies widely across Europe. Regional variations are due not only to genetic disease patterns but also reflect the novelty of genetic services. In most countries, the focus for genetic screening programs has been pregnant women and newborn children. Newborn children are screened only for disorders which are treatable. Prenatal screening when provided is for conditions for which termination may be offered. The only population screening programs (...) for adults are those for thalassaemia carrier status in Cyprus, Greece and Italy. Social responses to genetic screening range from acceptance to hostility. There is a fundamental tension between individual and communi ty in the debates in various European countries about implementation of screening programs. Opposition to genetic screening is frequently expressed in terms of arguments about "eugenics" with insufficient regard to the meaning of the term and its implications. Only a few countries have introduced explicit legislation on genetic screening. Legislation to address discrimination may provide more safeguards than legislation protecting genetic information itself. (shrink)

The project Euroscreen 2 has examined genetic screening and testing with particular reference to implications for insurance, commercialization through marketing of genetic tests direct to the public, and issues surrounding raising public awareness of these and other developments in genetics, including the practical experiment of a Gene Shop. This paper provides a snapshot of the three year project. The study groups work included monitoring developments in different European countries and exploring possibilities for regulation in insurance and commercialization together with public (...) attitudes to regulation. The success or failure of different strategies is not independent of public awareness. Exploration of policy, however, also requires examination of fundamental concepts such as solidarity and geneticization. (shrink)

Objectives—The development of predictive genetic tests provides a new area where consumers can gain knowledge of their health status and commercial opportunities. “Over-the-counter” or mail order genetic tests are most likely to provide information on carrier status or the risk of developing a multifactorial disease. The paper considers the social and ethical implications of individuals purchasing genetic tests and whether genetic information is different from other types of health information which individuals can obtain for themselves.Design—The discussion is illustrated by findings (...) from a questionnaire survey of university students as potential consumers. Topics covered included what health tests they had already used, expectations of genetic tests, willingness to pay, who should have access to the results and whether there need to be restrictions on such tests.Sample—Six hundred and fifteen first-year students in the universities of Leuven, Cardiff, Central Lancashire, Vienna and Nijmegen studying either medicine or a non-science subject.Results—Students were enthusiastic about genetic tests and had high expectations of their accuracy and usefulness but most thought they should be available through the health service and a minority thought that some tests, for example for sex selection, should not be available at all. There were few differences in responses by sex or subject of study but some by country. The paper also considers ethical and social issues outside the scope of a questionnaire survey of this type.Conclusion—To address some of these issues the sale of genetic tests to individuals can be made subject to ethical guidelines or codes of practice, for example to protect vulnerable groups, but there are fundamental social and ethical questions which such guidelines cannot address. (shrink)

We explore the meaning and implications of Bourdieu’s construct of the field of power and integrate it into a wider conception of the formation and functioning of elites at the highest level in society. Corporate leaders active within the field of power hold prominent roles in numerous organizations, constituting an ‘elite of elites’, whose networks integrate powerful participants from different fields. As ‘bridging actors’, they form coalitions to determine institutional settlements and societal resource flows. We ask how some corporate actors (...) become hyper-agents, those actors who ‘make things happen’, while others remain ‘ordinary’ members of the elite. Three hypotheses are developed and tested using extensive data on the French business elite. Social class emerges as persistently important, challenging the myth of meritocratic inclusion. Our primary contribution to Bourdieusian scholarship lies in our analysis of hyper-agents, revealing the debts these dominants owe to elite schools and privileged classes. (shrink)

Since its introduction in the 1980s, futility as a concept has held contested meaning and applications throughout medicine. There has been little discussion within the psychiatric literature about the use of futility in the care of individuals experiencing severe and persistent mental illness, despite some tacit acceptance that futility may apply in certain cases of psychiatric illness. In this paper, we explore the literature surrounding futility and argue that its connotation within medicine is to describe situations where patients believe that (...) interventions will almost certainly provide no meaningful benefit. We then provide two arguments in support of the use of futility within the care of individuals experiencing SPMI: that some SPMI can be considered a terminal illness, and that the risk-benefit ratio is a dynamic entity such that futility can help describe what Gillett calls the ‘risk of unacceptable badness’ when it comes to considering how an intervention might impact a patient’s quality of life. We posit that capacity should not pose an obstacle to declaring futility when caring for individuals experiencing SPMI and explain how futility is not antithetical to recovery in mental health. Finally, we describe how using futility within psychiatric practice can allow for a reorientation of care by signalling the need to shift to a palliative approach. (shrink)