In this article we provide an in-depth description of a new model of informed consent called ‘meta consent’ and consider its practical implementation. We explore justifications for preferring meta consent over alternative models of consent as a solution to the problem of secondary use of health data for research. We finally argue that meta consent strikes an appropriate balance between enabling valuable research and protecting the individual.

In an analysis of recent work on nudging we distinguish three positions on the relationship between nudging founded in libertarian paternalism and the protection of personal autonomy through informed consent. We argue that all three positions fail to provide adequate protection of personal autonomy in the clinical context. Acknowledging that nudging may be beneficial, we suggest a fourth position according to which nudging and informed consent are valuable in different domains of interaction.

In this paper I examine the prospects for a rights-based approach to the morality of pure risk-imposition. In particular, I discuss a practical challenge to proponents of the thesis that we have a right against being imposed a risk of harm. According to an influential criticism, a right against risk-imposition will rule out all ordinary activities. The paper examines two strategies that rights theorists may follow in response to this “Paralysis Problem”. The first strategy introduces a threshold for when a (...) risk-imposition is a rights violation. The second strategy drops the claim that rights are absolute and maintains that all rights infringements generate compensation duties. It is argued that both strategies face significant practical problems of their own and that the Paralysis Problem seems fatal for a right against risk-imposition in the absence of an adequate account of the morally relevant threshold risk. (shrink)

Background Several studies suggest that deviations from proper authorship practices are commonplace in medicine. The aim of this study was to explore experiences of and attitudes towards the handling of authorship in PhD theses at medical faculties in Denmark, Norway, and Sweden. Methods Those who defended their PhD thesis at a medical faculty in Scandinavia during the second half of 2020 were offered, by e-mail, to participate in an online survey. Survey questions dealt with experiences of violations of the first (...) three of the ICMJE authorship criteria and misuse of authorship order in the thesis articles, as well as respondents’ attitudes to these matters. Both questions with fixed response alternatives and questions with free-text responses were used. Quantitative data were analysed statistically using the Table functions in SPSS 25 and Chi-2 tests. Free-text responses were analysed qualitatively using manifest content analysis. Results 287 valid questionnaires were returned (response rate: 34.1%). Almost half (46.0%) of the respondents reported that the ICMJE authorship criteria were not fully respected in at least one of the papers in their thesis, while a vast majority (96.7%) found it important that authorship is handled according to the ICMJE authorship criteria. 24.4% reported inadequate handling of authorship order in at least one paper. The qualitative results provide a wide spectrum of examples of how the ICMJE authorship criteria are circumvented. Conclusion Despite increasing educational efforts to reduce deviations from good research practice at Scandinavian universities, the handling of authorship in medical papers remains problematic. (shrink)

In this paper I examine the connection between accounts of biological teleology and the biocentrist claim that all living beings have a good of their own. I first present the background for biocentrists’ appeal to biological teleology. Then I raise a problem of scope for teleology-based biocentrism and, drawing in part on recent work by Basl and Sandler, I discuss Taylor and Varner’s responses to this problem. I then challenge Basl and Sandler’s own response to the scope problem for its (...) reliance on a selectionist account of organismic teleology. Finally I examine the prospects for a biocentrist response to the problem of scope based on an alternative organisational account of internal teleology. I conclude by assessing the prospects for teleology-based biocentrism. (shrink)

This article introduces the notion of ‘routinisation’ into discussions of informed consent. It is argued that the routinisation of informed consent poses a threat to the protection of the personal autonomy of a patient through the negotiation of informed consent. On the basis of a large survey, we provide evidence of the routinisation of informed consent in various types of interaction on the internet; among these, the routinisation of consent to the exchange of health related information. We also provide evidence (...) that the extent of the routinisation of informed consent is dependent on the character of the information exchanged, and we uncover a range of causes of routinisation. Finally, the article discusses possible ways of countering the problem of routinisation of informed consent. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper (...) is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)

The increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent (...) or not at all. This study investigates whether meta consent preferences can be successfully elicited by a smartphone application in the adult Danish population. A smartphone app was developed for the elicitation of meta consent preferences. An invitation to use the app was distributed to a stratified, representative sample of the Danish adult population. The meta consent choices, the use of the app, user experience data, and demographic data were logged and analysed statistically using IBM SPSS version 20. Of 1000 potential respondents 221 used the app. One hundred eighty-eight of the respondents were female and 103 male. The age range was 19 to 79 years with an average of 51 years. Most users indicate 1) that they find the choices they are asked to make easy to understand, 2) that the application is easy to use, and 3) that this kind of choice should be offered to people. It is possible to collect meta consent preferences in the general, adult population using a smartphone app. (shrink)

This paper discusses a recent solution to the problem of artifact phantom functions by Beth Preston. A phantom function is a function associated with a kind of artifact that it is structurally incapable of performing. Preston proposes a criterion of artifact proper function according to which phantom functions can be proper functions. This paper argues that Preston’s criterion cannot ground the teleological and normative aspects definitive of proper functions and that the proposed criterion is not consistent with Preston’s account of (...) how copies of novel prototypes acquire proper functions. The paper defends an understanding of phantom functions suggested in earlier work by Preston. (shrink)

This paper discusses the use of the Milgram obedience experiments and the Tuskegee syphilis study in the bioethical literature. The two studies are presented and a variety of uses of them identified and discussed. It is argued that the use of these studies as paradigms of problematic research relies on a reduction of their complexity. What is discussed is thus often constructions of these studies that are closer to hypothetical examples than to the real studies.

The relationship between first and second language literacy was examined by identifying the skills and processes developed in the first language that were transferred to the second language. The performance of 40 university students from The People's Republic of China, Hong Kong, Vietnam and Australia were compared on a series of tasks that assessed phonological awareness and reading and spelling skills in English. The results indicated that the Hong Kong students (with non-alphabetic first language literacy) had limited phonological awareness compared (...) to those students with alphabetic first language literacy. The reading and spelling tasks showed no differences between the groups on real word processing. However, the students from Hong Kong had difficulty processing nonwords because of their poor phonological awareness. The results supported the hypothesis that people learning English as a second language (ESL) transfer their literacy processing skills from their first language to English. When the phonological awareness required in English had not been developed in the first language, ESL students were limited to a whole-word, visual strategy. The findings indicate that students from non-alphabetic written language backgrounds might have difficulties with new, or unfamiliar words when attending universities where English is the medium of instruction. (shrink)

In this paper I assess the explanatory powers of theories of function in the context of products that may result from synthetic biology. The aim is not to develop a new theory of functions, but to assess existing theories of function in relation to a new kind of biological and artifactual entity that might be produced in the not-too-distant future by means of synthetic biology. The paper thus investigates how to conceive of the functional nature of living systems that are (...) not the result of evolution by natural selection, or instantly generated by cosmic coincidence, but which are products of intelligent design. The paper argues that the aetiological theory of proper functions in organisms and artifacts is inadequate as an account of proper functions in such ‘Paley organisms’ and defends an alternative organisational approach. The paper ends by considering the implications of the discussion of biological function for questions about the interests and moral status of non-sentient organisms. (shrink)

Norman Daniels' and James Sabin's theory of “accountability for reasonableness” (A4R) is a much discussed account of due process for decision-making on health care priority setting. Central to the theory is the acceptance that people may justifiably disagree on what reasons it is relevant to consider when priorities are made, but that there is a core set of reasons, that all centre on fairness, on which there will be no disagreement. A4R is designed as an institutional decision process which will (...) ensure that only those reasons which everybody will agree are relevant and appropriate form part of decision-making. The argument which we will put forward in this paper questions whether it is a simple matter to delineate the core set of reasons and claims that it is a potential problem in A4R that it does not provide an indication of the exact content of this process. The paper first briefly outlines the content of A4R. It is argued that disagreement on what services should be high priorities cannot be resolved solely with a reference to “due process.” In order to retain consistency over time, decision-makers are required to agree and articulate what reasons qualify as relevant and how conflicting reasons are to be balanced in the course of the process. The second and main part of the paper then considers how the reason of “solidarity” can be handled within the A4R framework, and it is shown that deciding whether solidarity should be admitted to the core set of allowable reasons is not a simple matter. (shrink)

Theorists analyzing the concept of disease on the basis of the notion of dysfunction consider disease to be dysfunction requiring. More specifically, dysfunction-requiring theories of disease claim that for an individual to be diseased certain biological facts about it must be the case. Disease is not wholly a matter of evaluative attitudes. In this paper, I consider the dysfunction-requiring component of Wakefield’s hybrid account of disease in light of the artifactual organisms envisioned by current research in synthetic biology. In particular, (...) I argue that the possibility of artifactual organisms and the case of oncomice and other bred or genetically modified strains of organism constitute a significant objection to Wakefield’s etiological account of the dysfunction requirement. I then develop a new alternative understanding of the dysfunction requirement that builds on the organizational theory of function. I conclude that my suggestion is superior to Wakefield’s theory because it (a) can accommodate both artifactual and naturally evolved organisms, (b) avoids the possibility of there being a conflict between what an organismic part is supposed to do and the health of the organism, and (c) provides a nonarbitrary and practical way of determining whether dysfunction occurs. (shrink)

In this issue of the Hastings Center Report, Moti Gorin, Steven Joffe, Neal Dickert, and Scott Halpern offer a comprehensive defense of the use of nudging techniques in the clinical context, with the aim of promoting the best interests of patients. Their argument is built on three important claims: Nudging is ubiquitous and inescapable in clinical choice situations, and there is no neutral way of informing patients about their treatment choices; many patients do not have authentic preferences concerning their treatment (...) choices, and those that do can easily resist nudging; and, finally, since many people lack authentic preferences and those that do can still act on their preferences, nudging in the patients’ best interest is justified. I agree with the authors that if these three claims stand up to scrutiny, then they will provide a justification for many types of clinical nudging. I am, however, skeptical as to whether the claims can be sustained, despite the valiant efforts of Gorin and colleagues. (shrink)

The Future of Human Reproduction brings together new work, by an international group of contributors from various fields and perspectives, on ethical, social, and legal issues raised by recent advances in reproductive technology. These advances have put us in a position to choose what kindsof children and parents there should be; the aim of the essays is to illuminate how we should deal with these possibilities for choice. Topics discussed include gender and race selection, genetic engineering, fertility treatment, ovarian tissue (...) transfer, and post-menopausal pregnancy. The centralfocus of the volume is the interface between reproductive choice and public regulation. (shrink)

Synthetic biology is an emerging discipline that aims to apply rational engineering principles in the design and creation of organisms that are exquisitely tailored to human ends. The creation of artificial life raises conceptual, methodological and normative challenges that are ripe for philosophical investigation. This special issue examines the defining concepts and methods of synthetic biology, details the contours of the organism–artifact distinction, situates the products of synthetic biology vis-à-vis this conceptual typology and against historical human manipulation of the living (...) world, and explores the normative implications of these conclusions. In addressing the challenges posed by emerging biotechnologies, new light can be thrown on old problems in the philosophy of biology, such as the nature of the organism, the structure of biological teleology, the utility of engineering metaphors and methods in biological science, and humankind’s relationship to nature. (shrink)

The question of if, and under what conditions transsexuals should be allowed to participate in sports in their acquired sex is becoming increasingly relevant partly because the number of transsexuals is increasing partly because many countries now provide mechanisms for achieving legal recognition as belonging to the new acquired sex. This paper develops (1) an analysis of the justification for maintaining sex segregation in some sports and (2) an account of the rights of transsexuals to be recognised in their new (...) sex. On the basis of these two analyses it critically evaluates two set of rules for the participation of transsexuals in elite sports: the UK guidelines issued in pursuance of the Gender Recognition Act 2004 and the International Olympic Committee's guidelines. It is argued that these guidelines are conflicting and that a modified set of criteria is more justifiable. (shrink)

This comment responds to Kevin Warwick’s article on predictability and responsibility with respect to brain-machine interfaces in action. It compares conventional responsibility for device use with the potential consequences of phenomenological human-machine integration which obscures the causal chain of an act. It explores two senses of “responsibility”: 1) when it is attributed to a person, suggesting the morally important way in which the person is a causal agent, and 2) when a person is accountable and, on the basis of fairness (...) about rewards and sanctions, has a duty to act responsibly and accept liability. The comment suggests that, in the absence of absolute knowledge and predictability, we continue to engage in practical forms of reasoning about the responsibility for BMI-use in ways which are inclusive of uncertainties about the liability of persons versus devices and those who create them. (shrink)

Due to their understanding of self-management, healthcare team members responsible for depressed older persons can experience an ethical dilemma. Each team member contributes important knowledge and experience pertaining to the management of depression, which should be reflected in the management plan. The aim of this study was to explore healthcare team members’ reflections on the ethical dilemmas involved in promoting self-management among depressed older persons. A qualitative design was used and data were collected by means of focus group interviews. The (...) results revealed one main theme: ‘Lack of trust in the community health care system’s commitment to bringing about effectiveness and change, based on three themes; ‘Struggling to ensure the reliable transfer of information about depressed older persons to professionals and family members’, ‘Balancing autonomy, care and dignity’ and ‘Differences in the understanding of responsibility’. Lack of engagement on the part of and trust between the various professional categories who work in the community are extremely counterproductive and have serious implications for patient dignity as well as safety. In conclusion, ethical dilemmas occur when staff members are unable to act in accordance with their professional ethical stance and deliver an appropriate standard of care. (shrink)

Recent technical developments in genetictesting has led to a situation where the DNA inpreviously stored tissue samples can beextracted and used for genetic analysis. Thisraises the question of how to decide whether aspecific use of such samples should be allowed.Using the genetic testing of ancient DNA ingeneral, and the DNA of the pharaoh Tutankhamenin particular as examples this paper analysesthe question. It investigates whether ethicalframeworks based on proxy consent, culturalaffiliation, ownership, or the privacy rightsof the dead are appropriate and justifiable (...) inthis context. The conclusion is that frameworksbased on proxy consent, cultural affiliation,and ownership are not very useful. (shrink)

This paper considers the ethical issues raised by biobanking of material from children who are not mature enough to give ethically valid consent. The first part considers consent requirements for entry of such materials in the biobank, whereas the second part looks at the issues that arise when a competent child later wants to withdraw previously sored materials, and at the issues that arise when there is informational entanglement between information about a parent and information about a child. The paper (...) argues for three main conclusions:That it is in most cases acceptable for parents to give proxy consent to entry of material from their children ino biobanks, even though this is not strictly speaking in the best interest of the child;that a right to withdraw from the biobank is more important when material has been entered with proxy consent; andthat disputes about the withdrawal of entangled information, i.e. information that is both about a parent and a child, should be resolved in favour of the child. (shrink)

When children are too young to make their ownautonomous decisions, decisions have to be madefor them. In certain contexts we allow parentsand others to make these decisions, and do notinterfere unless the decision clearly violatesthe best interest of the child. In othercontexts we put a priori limits on whatkind of decisions parents can make, and/or whatkinds of considerations they have to take intoaccount. Consent to medical research currentlyfalls into the second group mentioned here. Wewant to consider and ultimately reject one (...) ofthe arguments put forward for putting medicalresearch into the second category. We willargue that some objections to children'sparticipation in research are either based onan implausibly restrictive conception of whatis in fact in the child's best interests orthat there is an implicit and false premisehidden in this argument; i.e., the premise thatour children have so deeply fallen into moralturpitude that we must assume that they wouldnot want to fulfill their moral obligations,or, that they will grow up to be morallydeficient and will then wish not to have actedwell while a child. (shrink)

Increasingly, commissioners and providers of services for people with intellectual disabilities are turning to assistive technology and telecare as a potential solution to the problem of the increased demand for services, brought about by an expanding population of people with intellectual disabilities in the context of relatively static or diminishing resources. While there are numerous potential benefits of assistive technology and telecare, both for service providers and service users, there are also a number of ethical issues. The aim of this (...) paper is to raise these issues and to set them within the ethical framework proposed by Beauchamp and Childress. There is a need for a wider debate as a first step in the development of strategies to address the issues raised in the paper. (shrink)

This paper gives a presentation and critical assessment of the phenomenological philosophy and ethics of the Danish theologian and philosopher K. E. Løgstrup (1905–1981). It is argued that although the ethics of Løgstrup contain valuable insights, an uncritical appropriation as the main source for a health care ethics or a philosophy of caring, is problematic. Løgstrup's philosophy contains a number of internal problems, and does not adequately deal with some problems raised by work in the modern health care setting.

Whenever embryo experimentation is discussed the question of whether it is preferable to use spare or specifically produced (‘research’) embryos for destructive embryo experimentation always enters the debate at some stage. This question is analysed, and it is suggested that the distinction is morally uninteresting, but rhetorically useful for both sides in the debate. It is further suggested that part of the force of this distinction is caused by the fact that it is parasitic on a real moral distinction based (...) on the degree to which the gametes used in the experiment are obtained by explicit or implicit coercion. (shrink)

Background Denmark has implemented a comprehensive, nationwide pharmaceutical information system, and this system has been evaluated by the Danish Council of Ethics. The system can be seen as an exemplar of a comprehensive health information system for clinical use. Analysis The paper analyses 1) how informed consent can be implemented in the system and how different implementations create different impacts on autonomy and control of information, and 2) arguments directed towards justifying not seeking informed consent in this context. Results and (...) Conclusion Based on the analysis a heuristic is provided which enables a ranking and estimation of the impact on autonomy and control of information of different options for consent to entry of data into the system and use of data from the system. The danger of routinisation of consent is identified. The Danish pharmaceutical information system raises issues in relation to autonomy and control of information, issues that will also occur in relation to other similar comprehensive health information systems. Some of these issues are well understood and their impact can be judged using the heuristic which is provided. More research is, however needed in relation to routinisation of consent. (shrink)

Smajdor argues that “recognition” is the solution to the “reifying attitude” that results from “the urge to protect ‘vulnerable’ people through exclusion from research”. Drawing on theories of reification, we argue that it is the concepts of autonomy and vulnerability themselves that have been reified, resulting in the impoverishment of approaches to autonomy at law and in research ethics. Overcoming such reification demands a deeper consideration of the grounds on which vulnerable individuals are owed recognition and thereby the forms such (...) recognition should take. Smajdor argues for a recognition that appeals to autonomy and that manifests in providing vulnerable individuals with the opportunity to assent. The problem is that this kind of recognition is dependent on a more fundamental kind. It is this second form of recognition that would need to do the heavy lifting for assent-based frameworks to avoid the same problems we find with consent. (shrink)

This chapter examines Soren Kierkegaard's views and relationship with the Church, explaining that while Kierkegaard was a frequent churchgoer, he also considered the Church a corrupt and disgraceful business enterprise. It discusses Kierkegaard's criticism on the development of the Church as an institution and analyses various aspects of his ecclesiastical conception of the Church. The chapter also considers Kierkegaard's own experiences in writing and delivering sermons.

Many ICT services require that users explicitly consent to conditions of use and policies for the protection of personal information. This consent may become ‘routinised’. We define the concept of routinisation and investigate to what extent routinisation occurs as well as the factors influencing routinisation in a survey study of internet use. We show that routinisation is common and that it is influenced by factors including gender, age, educational level and average daily internet use. We further explore the reasons users (...) provide for not reading conditions and policies and show that they can be grouped in meaningful ways that may delineate different types of routinsation. (shrink)

The health care systems are fairly similar in theScandinavian countries. The exact details vary, but inall three countries the system is almost exclusivelypublicly funded through taxation, and most (or all)hospitals are also publicly owned and managed. Thecountries also have a fairly strong primary caresector (even though it varies between the countries),with family physicians to various degrees acting asgatekeepers to specialist services. In Denmark most ofthe GP services are free. For the patient in Norwayand Sweden there are out-of-pocket co-payments for GPconsultations, (...) with upper limits, but consultations forchildren are free. Hospital treatment is free inDenmark while the other countries use a system without-of-pocket co-payment. There is a very strongpublic commitment to access to high quality healthcare for all. Solidarity and equality form theideological basis for the Scandinavian welfare state.Means testing, for instance, has been widely rejectedin the Scandinavian countries on the grounds thatpublic services should not stigmatise any particulargroup. Solidarity also means devoting specialconsideration to the needs of those who have lesschance than others of making their voices heard orexercising their rights. Issues of limited access arenow, however, challenging the thinking about a healthcare system based on solidarity. (shrink)

Patient self-management programs have become increasingly popular and are now also receiving official endorsements. This paper analyses two possible types of positive justifications for promoting patient self-management: evidence-based and patient-centred justifications. It is argued that evidence-based justifications, although important politically are deficient and that the primary justification for patient self-management must be a patient-centred justification focusing on the patient’s privileged access to his or her own lived body.

In his recent book The Foundation of Bioethics , H. Tristam Engelhardt Jr. advances the idea of a peaceable pluralist moral society based on principles of autonomy, beneficience, and ownership. This paper tries to show that unless there is one and only one rationally sustainable definition of "a person", then the peaceable society cannot remain peaceable, but will be stirred up by groups with different and equally rational definitions. The paper further tries to show that Engelhardt's own definition of "a (...) persons in the strict sense" is an unsatisfactory solution to the problem, and the same is true for any of the possible compromises. Keywords: medical ethics, persons, autonomy CiteULike Connotea Del.icio.us What's this? (shrink)

Bioethics is, as is moral philosophy in general, a field spanning a range of different philosophical approaches, normative standpoints, methods and styles of analysis, metaphysics, and ontologies. In discussing bioethics, it is often seen as useful to introduce some kind of order on the field by categorizing individual philosophers or specific arguments into a relatively small number of categories. Such categorization or classification has several functions. It may help to show the relationship between basic assumptions and specific arguments or it (...) may be used argumentatively by arguing not against a single philosopher or her arguments but against the category to which she or they belong or are claimed to belong. In this way, whole lines of argument can be disposed of in one fell swoop and whole groups of philosophers dismissed by showing that they belong to some category that can, in some way, be discounted because it is fallacious. Or, conversely, lines of arguments and groups of philosophers can be celebrated and appropriated as support for yet new arguments. (shrink)

Most of us have two strong intuitions (or sets of intuitions) in relation to fairness in health care systems that are funded by public money, whether through taxation or compulsory insurance. The first intuition is that such a system has to treat patients (and other users) fairly, equitably, impartially, justly and without discrimination. The second intuition is that doctors, nurses and other health care professionals are allowed to, and may even in some cases be obligated to give preference to the (...) interests of their particular patients or clients over the interests of other patients or clients of the system. These two intuitions are in potential conflict. One of the most obvious ways in which to ensure impartiality in a health care system is to require impartiality of all actors in the system, i.e. to give health care professionals a duty to treat everyone impartially and to deny them the ‘right’ to give their patients preferential treatment. And one of the possible side-effects of allowing individual health care professionals to give preference to ‘their clients’ is to create inequality in health care. This paper explores the conflict and proposes that it can be right to give preference to ‘your’ patients in certain circumstances. (shrink)

The idea that it is acceptable to ‘nudge’ people to opt for the ‘healthy choice’ is gaining currency in health care policy circles. This article investigates whether researchers evaluating Abdominal Aortic Aneurysm Screening Programmes (AAASP) attempt to influence decision makers in ways that are similar to popular ‘nudging’ techniques. Comparing two papers on the health economics of AAASP both published in the BMJ within the last 3 years, it is shown that the values chosen for the health economics modelling are (...) not representative of the literature and consistently favour the conclusions of the articles. It is argued (1) that this and other features of these articles may be justified within a Libertarian Paternalist framework as ‘nudging’ like ways of influencing decision makers, but also (2) that these ways of influencing decision makers raise significant ethical issues in the context of democratic decision making. (shrink)

This paper discusses the link between pharmacogenetics and race, and the global justice issues that the introduction of pharmacogenetics in pharmaceutical research and clinical practice will raise. First, it briefly outlines the likely impact of pharmacogenetics on pharmaceutical research and clinical practice within the next five to ten years and then explores the link between pharmacogenetic traits and ‘race’. It is shown that any link between apparent race and pharmacogenetics is problematic and that race cannot be used as a proxy (...) for pharmacogenetic knowledge. The final section considers the implications of the development of pharmacogenetics for health care systems in low‐ and middle‐income countries. (shrink)