Introduction

Bioethics remains a highly contested field, and perhaps nowhere more so than in its relationship with genetics and genomics. The dedicated funding for research on ethical, legal and social issues (ELSI) in relation to the Human Genome Project (and the analogous ELSA programme in Europe) gave a high profile to the field of study, giving rise to extensive discussion about the results, and about the future of bioethics. The contested nature of the field arises partly from disagreements about whether it is a branch of applied ethics, in turn a type of applied philosophy, or whether it is a multidisciplinary field of study open to many approaches, or whether, again, it is developing as a discipline in its own right. In some of its manifestations it is criticised for being insufficiently attentive to social context, or for having a particular agenda. In this section, for example, Jackie Leach Scully writes of the uneasy interactions between bioethics and disability. Arguably, however, both have been disadvantaged by a tendency to overlook the heterogeneity in each of them. Bioethics is sometimes represented as if it is one approach to developments such as have

taken place in genetics and genomics, even sometimes just as the so-called ‘four principles’ of biomedical ethics. Criticisms may then be directed to this approach (as represented), without being alive to the diversity of the field, evidenced for example in the debates internal to bioethics between feminist bioethics, virtue ethics approaches and Kantian approaches. This is not intended to be an exhaustive list. Towards the end of her paper, Scully draws attention to this diversity, which, she surmises, offers the hope of a more fruitful relationship between bioethics and disability in the future. While the term ‘bioethics’ is usually attributed to Van Rensselaer Potter (1971), who

used it to refer to issues relevant to the biosphere as a whole, the development of bioethics as a distinct field of study is normally traced to developments in the 1960s, including both advances in health care itself (such as kidney dialysis and organ transplantation) that gave rise to new issues that needed to be addressed; and to social and political movements concerning individual and group rights, leading to liberalisation regarding homosexuality and abortion, among other things. In its earliest manifestations it was largely concerned with relationships between health care professionals and individual patients, and with allocation of resources. The focus of bioethical thinking, given its roots, was primarily individualistic. Towards the end of the twentieth century, however,

the field of bioethics expanded its scope and reviewed its theoretical repertoire, and this coincided with and was arguably influenced by rapid developments in the field of genomics, as population genetic research became increasingly high profile. Public health perspectives became more prominent, and explicit attention was given to the ways in which ethical thinking was shifting (for example, Knoppers and Chadwick 2005). Discussion of ethical aspects of medicine, of course, preceded the emergence of

bioethics as a distinct field, and the history of discussion of genetics in particular has been a fraught one, because of the legacy of social and political circumstances in which genetics has been misused. The issues surrounding ethics and disability, therefore, have a considerably longer history than that which we find since the development of the distinct field of bioethics. The history of eugenics, and responses to that, however, have arguably been other factors in the predominance of the framing of individualism and the rhetoric of choice, to be found in bioethical discussion of genetics prior to the shifts to a population-wide perspective mentioned above. The history of the ethical debates, from eugenics to human genetic engineering, is traced in the illuminating chapter in this section by Evans and Schairer. Their contribution demonstrates the ways in which interventions are made respectable by bringing them within the circle of ‘medicine’. Despite other scientific developments, such as stem cell research, the prospect of gene therapy continues to constitute an interesting case study of a much hoped-for intervention that promised much at an early stage and fell into controversy surrounding failed experiments, including the death of Jesse Gelsinger, and concerns about conflict of interest in research. As Evans and Schairer show, however, certain distinctions (which are questionable) such as the distinction between therapy and enhancement, are used to lend respectability to some aspects of gene transfer. It is interesting to track also, both the ways in which the new population perspectives distance themselves from the older, explicitly eugenic, ones, and the ways in which emphasis on the importance of the study of human variation attempts to avoid the problems encountered by the Human Genome Diversity Project. Advances in science and technology can produce a situation in which it is no longer

possible to think in a certain way, and this leads to the requirement to rethink the meaning of certain concepts. Obvious examples include the definition of death; the meaning of parenthood; the understanding of the term ‘embryo’. A prominent example of an ethical concept that has come under increasing scrutiny in the context of genetics and genomics is that of privacy. Privacy has been under pressure, first within the genetic clinic, in the light of the dilemmas of disclosure, e.g. of non-paternity or of health status, then in the context of population genetic research, in the light of the establishment of databases on a large scale. These include both electronic databases (as in the Human Variome Project) and the collection of biological samples linked to personal information, biobanks, with associated debates about anonymisation and coding. Beyond the developments in research themselves, however, other social and political changes in the post 9/11 world are also relevant, as interest in security moves centre-stage, with concomitant developments in biometric identification technologies. Hence it is important to examine critically the ways in which privacy is being rethought, and this subject is addressed in the contribution to this section by David Weisbrot. While his chapter deals explicitly with the Australian context, it has implications that are far-reaching. Animal biotechnology, and animal issues more generally, have arguably been under

represented in the bioethics literature. This might appear strange, as one of the early pioneers in the field was Peter Singer, who also published the ground-breaking book Animal Liberation in the 1970s (Singer 1975). The importance of animal issues is

highlighted by developments in genomics: with regard to transgenic animals, not only are there animal welfare considerations to consider but attention is increasingly turning to issues of the dignity of the animals in question. While ‘dignity’ has been a hotly contested concept in human bioethics, the employment of the concept in the context of animal bioethics raises important issues that go beyond suffering, such as the ability of the animal to live according to its natural kind. Comparative genomics, moreover, has implications for the identity of species and of our own relations with other species, in the light of the ongoing search for what, if anything, makes humans unique. As new technologies come on the scene as candidates for ethical discussion, such as

nanotechnology, a question frequently asked is ‘What’s new?’ Genetics and genomics have to a certain extent become a reference point against which further developments are measured, as regards the ethical aspects. While much has been learned from the genomics debates, however, thinking in this area is far from settled, as both concepts and methodologies in bioethics are continually open to development.