The growing use of genetic tests in medical practice has a strong influence on some widespread notions of health and unhealth. Two consequences of this phenomenon are: (i) important changes in the meaning of these current notions and, therefore, (ii) the arrival of a new taxonomy or rearrangement for the so-called “health-concepts”. This paper attempts to demonstrate that both facts fuel a theoretical change that might be considered a model of scientific Kuhnean change in a fundamental aspect. On the other (...) hand, this theoretical shift process offers the basis for approaching a present-day controversy, i.e. whether Western society is going through a period of geneticization or not, from a new perspective. (shrink)

ABSTRACT Pharmacogenetics is a rapidly expanding area of research exploring the relationship between inter‐individual genetic variation and drug response, with the goal of developing genetically optimised therapies. Slippery slope arguments claim that a particular action should be rejected (or supported) because it might be the first step onto a slippery slope leading to undesirable (or desirable) consequences. In this article, several slippery slope arguments relevant to the context of pharmacogenetics are evaluated under consideration of underlying reasons for their popularity. The (...) author concludes that although the examined arguments are unconvincing as slippery slope arguments, they do matter in this context. While positive slippery slope arguments serve as a driving force to fuel the development of pharmacogenetics, their negative counterparts play an important role to sensitise policy makers and the public to potential problems. (shrink)

In the present paper, we focus on the role that the concept of geneticization has played in the discussion about health care, bioethics and society. The concept is discussed and examples from the evolving discourse about geneticization are critically analyzed. The relationship between geneticization, medicalization and biomedicalization is described, emphasizing how debates about the latter concepts can inspire future research on geneticization. It is shown how recurrent themes from the media coverage of genetics portray typical traits of geneticization and thus (...) contribute to the process. We look at examples of small-scale studies from the literature where geneticization of medical practice has been demonstrated. Methodological disputes about the relevance of empirical evidence for the geneticization thesis and the normative status of the concept are discussed. We consider arguments to the effect that ideas from mainstream bioethics have facilitated geneticization by emphasizing individualistic notions of autonomy and responsibility while ignoring the role of genetics in the wider social context. It is shown how a concept like geneticization, which can be used to draw the attention of philosophers, social scientists and others to challenges that tend to be neglected by mainstream bioethics, also has the potential to move people’s attention away from other pertinent issues. This may happen if researchers become preoccupied with the transformative effects of genetics, and we argue that a wider reading of geneticization should inspire critical analysis of the sociocultural preconditions under which genetics is currently evolving. (shrink)

This paper discusses the issue of whether we have responsibilities to future generations with respect to genetic screening, including for purposes of selective abortion or discard. Future generations have been discussed at length among scholars. The concept of ‘Guardianfor Future Generations’ is tackled and its main criticisms discussed. Whilst germ-line cures, it is argued, can only affect family trees, genetic screening and testing can have wider implications. If asking how this may affect future generations is a legitimate question and since (...) we indeed make retrospective moral judgements, it would be wise to consider that future generations will make the same retrospective judgements on us. Moreover such technologies affect present embryos to which we indeed can be considered to have an obligation. (shrink)

Although principles, as a framework to resolving moral dilemmas are still debated and seem to be in a philosophical quagmire, there are strong arguments that by specification one can resolve case-specific dilemmas in certain areas of bioethics. When it comes to genetic screening and testing however, the problem at the base is a moral disagreement on higher-order principles—such as the status of the embryo and parental issues. No amount of specification can resolve these issues without a dose of relativism. We (...) explore a possibility of agreement on debatable areas specifically in regard to genetics—such as conferring status to the embryo solely for purposes of preventing genetic selection; but it is difficult to see how this can be incorporated into law without extrapolation to other areas. We conclude therefore that the four-principles approach, albeit valuable for expounding opposing views and discussing issues, cannot either alone or by specification, help resolve issues of genetic screening and testing without agreeing on higher order principle. This does not seem to be a possibility in the near future. (shrink)

Is genetic information different from other types of medical information and is therefore a special treatment required because of its special features? This question has been discussed since the mid-1990s under the label of genetic exceptionalism. This article discusses the essential arguments of the genetic exceptionalism discourse and analyzes their ethical reach. The primary question of this paper is whether the arguments of the current debate, with its predominantly scientific focus, are capable of solving the ethical questions raised by genetic (...) exceptionalism in such a way as to do justice to the normative scope and epistemological complexity. The author argues that the current genetic exceptionalism discourse is restrictive and offers little opportunity for exploring viable and ethically justifiable solutions regarding the implementation of genetic information in medical practice. Discourses on genetic exceptionalism should not only adhere to scientifically consistent criteria but also reflect individual perceptions and cultural values, enriched by adequate historical reflection. (shrink)

Individual autonomy is a concept highly appreciated in modern Western societies. Its significance is reflected by the central importance and broad use of the model of informed consent in all fields of medicine. In predictive genetic testing, individual autonomy gains particular importance, for what is in focus here is not so much a concrete medical treatment but rather options for taking preventive measures and the influence that the test results have on long-term lifestyle and preferences. Based on an analysis of (...) autonomy-related issues in predictive genetic diagnosis and genetic screening programmes, this contribution stresses the central relevance of a broad notion of autonomy for the discussion of ethical issues raised in connection with predictive genetic testing and genetic screening programmes. Only against the background of such a broad notion of autonomy, which stresses not only free and informed decision-making but also the relevance of long-term prospects for leading a self-determined life in familial and social contexts, can the manifold autonomy-related issues linked to predictive genetic testing be given adequate consideration. (shrink)

This philosophical inquiry examines the nature of the technology of genetic predisposition testing and its relation to patients as whole persons. The bioethical principles of nonmaleficence, beneficence, autonomy and justice are judged insufficient to resolve issues associated with use. A new principle of ‘sustained being’, drawn from philosophical propositions of Pellegrino, is suggested. The new principle is suited to an evolving practice and is compatible with consequentialist, deontological and relational ethics theories. The notion of ‘taking care’ is related to nursing (...) in genetic health care to form a standard of conduct and a moral imperative to ‘safeguard being’. (shrink)

Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced (...) itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals’ freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in (...) common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)