Background: As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously (...) for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics.DiscussionThis paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of 'personal utility.'SummaryConsideration of test characteristics is essential to any valuable discourse on the ELSI of personal genome testing for multifactorial diseases. Four key characteristics of the test - targeted/non-targeted testing, analytical validity, clinical validity and clinical utility - together determine the applicability and the relevance of ELSI to specific tests. The paper identifies and discusses four areas of interest for the ELSI-debate on personal genome testing: informational problems, risks, regulatory issues, and the notion of personal utility. (shrink)

One frequently used argument in the discussion on human enhancement is that enhancement is a form of cheating. This argument is well-known in relation to doping in sports, but recently it has also been used with regard to cognitive enhancement in the context of education and exams. This paper analyses the enhancement-is-cheating argument by comparing sports and education, and by evaluating how the argument can be interpreted in both contexts. If cheating is understood as breaking the rules in order to (...) gain an unfair advantage over others, it can be argued that some enhancements are a form of cheating. This problem of cheating is, however, relatively easy to remedy by either changing the rules, or by instituting controls and sanctions. This does not, therefore, constitute a categorical objection to enhancement. A further analysis of the intuitions behind the enhancement-is-cheating argument, however, shows that if sports and education are understood as “practices”, with their own internal goods and standards of excellence, some potential problems of enhancement can be articulated. These concern the internal goods and standards of excellence that are characteristic of specific practices. Seen from this perspective, the important question is how enhancement technologies might be embedded in specific practices—or how they might corrode them. (shrink)

The hopes and fears expressed in the debate on human enhancement are not always based on a realistic assessment of the expected possibilities. Discussions about extreme scenarios may at times obscure the ethical and policy issues that are relevant today. This paper aims to contribute to an adequate and ethically sound societal response to actual current developments. After a brief outline of the ethical debate concerning neuro-enhancement, it describes the current state of the art in psychopharmacological science and current uses (...) of psychopharmacological enhancement, as well as the prospects for the near future. It then identifies ethical issues regarding psychopharmacological enhancements that require attention from policymakers, both on the professional and on the governmental level. These concern enhancement research, the gradual expansion of medical categories, off-label prescription and responsibility of doctors, and accessibility of enhancers on the Internet. It is concluded that further discussion on the advantages and drawbacks of enhancers on a collective social level is still needed. (shrink)

Aldous Huxley’s Brave New World is a famous dystopia, frequently called upon in public discussions about new biotechnology. It is less well known that 30 years later Huxley also wrote a utopian novel, called Island. This paper will discuss both novels focussing especially on the role of psychopharmacological substances. If we see fiction as a way of imagining what the world could look like, then what can we learn from Huxley’s novels about psychopharmacology and how does that relate to the (...) discussion in the ethical and philosophical literature on this subject? The paper argues that in the current ethical discussion the dystopian vision on psychopharmacology is dominant, but that a comparison between Brave New World and Island shows that a more utopian view is possible as well. This is illustrated by a discussion of the issue of psychopharmacology and authenticity. The second part of the paper draws some further conclusions for the ethical debate on psychopharmacology and human enhancement, by comparing the novels not only with each other, but also with our present reality. It is claimed that the debate should not get stuck in an opposition of dystopian and utopian views, but should address important issues that demand attention in our real world: those of evaluation and governance of enhancing psychopharmacological substances in democratic, pluralistic societies. (shrink)

Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice (...) behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed. (shrink)

Background When anti-cancer treatments have been given market authorization, but are not (yet) reimbursed within a healthcare system, physicians are confronted with ethical dilemmas. Arranging access through other channels, e.g., hospital budgets or out-of-pocket payments by patients, may benefit patients, but leads to unequal access. Until now, little is known about the perspectives of physicians on access to non-reimbursed treatments. This interview study maps the experiences and moral views of Dutch oncologists and hematologists.Methods A diverse sample of oncologists and hematologists (...) (n = 22) were interviewed. Interviews were analyzed thematically using Nvivo 12 qualitative data software.Results This study reveals stark differences between physicians’ experiences and moral views on access to anti-cancer treatments that are not (yet) reimbursed: some physicians try to arrange other ways of access and some physicians do not. Some physicians inform patients about anti-cancer treatments that are not yet reimbursed, while others wait for reimbursement. Some physicians have principled moral objections to out-of-pocket payment, while others do not.Conclusion Oncologists and hematologists in the Netherlands differ greatly in their perspectives on access to expensive anti-cancer treatments that are not (yet) reimbursed. As a result, they may act differently when confronted with dilemmas in the consultation room. Physicians working in different healthcare systems may face similar dilemmas. (shrink)

An increasing number of people seek medical attention for mild cognitive symptoms at older age, worried that they might develop Alzheimer’s disease. Some clinical practice guidelines suggest offering biomarker testing in such cases, using a brain scan or a lumbar puncture, to improve diagnostic certainty about Alzheimer’s disease and enable an earlier diagnosis. Critics, on the other hand, point out that there is no effective Alzheimer treatment available and argue that biomarker tests lack clinical validity. The debate on the ethical (...) desirability of biomarker testing is currently polarized; advocates and opponents tend to focus on their own line of arguments. In this paper, we show how the method of reflective equilibrium can be used to systematically weigh the relevant arguments on both sides of the debate to decide whether to offer Alzheimer biomarker testing. In the tradition of RE, we reflect upon these arguments in light of their coherence with other argumentative elements, including relevant facts, ethical principles, and theories on societal ideals or relevant concepts, such as autonomy. Our stance in the debate therefore rests upon previously set out in-depth arguments and reflects a wide societal perspective. (shrink)

Many healthy volunteers choose to take part in Alzheimer’s disease prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this (...) paper, the claim that AD biomarkers have personal utility for asymptomatic individuals is critically assessed. It demonstrates that in the absence of clinical validity, AD biomarkers cannot have personal utility and do not serve research participants’ autonomy. Over the next few years, many research groups will be confronted with participants’ preferences to learn the results of AD biomarker tests. When researchers choose to make results available upon explicit request, they should ensure adequate information provision and education, notably on the uncertain clinical significance of AD biomarker information. Routine disclosure of AD biomarkers to cognitively unimpaired individuals in research settings cannot be justified with an appeal to the personal utility of AD biomarker information. (shrink)

Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

This study investigates what professional caregivers working in nursing homes consider to be a good life for residents suffering from dementia. Ten caregivers were interviewed; special attention was paid to the way in which they deal with conflicting values. Transcripts of the interviews were analysed qualitatively according to the method of grounded theory. The results were compared with those from a similar, earlier study on ideals found in mission statements of nursing homes. The concepts that were mentioned by most interviewed (...) participants as important for a good life were ‘peace and quiet’, ‘going along with subjective experience’ and ‘no enforcement: the way the resident wants it’. A considerable overlap was found between the interviews and the mission statements; however, when compared with the mission statements, the interviews put less emphasis on individuality and on giving meaning, and more on offering residents pleasant activities. When faced with conflicting values, caregivers tend to make pragmatic and more or less intuitive decisions. Although this has its merits, it may be desirable to stimulate conscious reflection regarding conflict between different values. (shrink)

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a “standard case” of a patient with physical suffering and limited life expectancy, the descriptions included cases in (...) which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. Results: The cases were recognisable for almost all respondents. For the “standard case” nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2–49%) than consultants (25–79%) and members of the euthanasia review committees (24–88%). In each group, the suffering of patients with early dementia and patients who were “tired of living” was least often considered to be unbearable. Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient’s suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia. (shrink)

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy—as a right and as an ideal—we (...) describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so. (shrink)

It may seem paradoxical to speak of the ‘goodlife’ for demented elderly. Many people consider dementia to be a life-wrecking disease and nursing homes to be terrible places. Still, it is relevant to ask how we can make life as good as possible for demented nursing home residents. This paper explores what three standard philosophical accounts of well-being — subjective preference theory, objectivist theories, and hedonism — have to say about the good life for demented people. It is concluded that (...) the relevant differences between the various philosophical theories manifest themselves not so much in their general account of the substantial content of ‘the good life’ but in a number of specific controversies. These concern the nature of well-being, the necessity of endorsement by the patient, the value of experience and the need for experiences to be rooted in reality. Moreover, it is argued that further research should pay detailed attention to the process of dementia and to the effects of this process on patients' identities, self-conceptions, capacities, preferences, values and the like, and that a narrative approach which incorporates the factor time may offer a more comprehensive account of the good life for demented elderly. (shrink)

One of the reasons why moral enhancement may be controversial, is because the advantages of moral enhancement may fall upon society rather than on those who are enhanced. If directed at individuals with certain counter-moral traits it may have direct societal benefits by lowering immoral behavior and increasing public safety, but it is not directly clear if this also benefits the individual in question. In this paper, we will discuss what we consider to be moral enhancement, how different means may (...) be used to achieve it and whether the means we employ to reach moral enhancement matter morally. Are certain means to achieve moral enhancement wrong in themselves? Are certain means to achieve moral enhancement better than others, and if so, why? More specifically, we will investigate whether the difference between direct and indirect moral enhancement matters morally. Is it the case that indirect means are morally preferable to direct means of moral enhancement and can we indeed pinpoint relevant intrinsic, moral differences between both? We argue that the distinction between direct and indirect means is indeed morally relevant, but only insofar as it tracks an underlying distinction between active and passive interventions. Although passive interventions can be ethical provided specific safeguards are put in place, these interventions exhibit a greater potential to compromise autonomy and disrupt identity. (shrink)

In a discussion about human enhancement it is common to make a distinction between medical treatment and enhancement. The treatment‐enhancement (TE) distinction may work as long as we are faced with extreme and evident examples of treatments and enhancements, but it leaves us with unanswered questions if we are confronted with the borderlines cases in the muddy gray area between obvious treatment and obvious enhancement. This chapter focuses on this gray area, shows its complexities, and asks how we can answer (...) questions regarding the medical domain, or regarding the moral obligation for reimbursement if we cannot depend on the TE distinction. The example of adult attention deficit hyperactivity disorder (ADHD) is used to show how difficult it is to distinguish between treatment of disease and enhancement of normal function, especially given the phenomena of medicalization, disease mongering, and expanding disease definitions. (shrink)

This paper is a reaction to an article by John Arras published earlier in this journal. In this article Arras argues that “freestanding pragmatism” has little new to offer to bioethics. We respond to some of Arras' arguments and conclude that, although he overstates his case at certain points, his critique is, broadly speaking, correct. We then introduce and discuss an alternative approach to pragmatist ethics, one which puts to work the ideas and insights of pragmatism conceived as a broad (...) philosophical movement, without lapsing into a canon dependent approach. The approach we propose exhibits a number of characteristics that differ from Arras'saccount of freestanding pragmatism and offers something new to bioethics. (shrink)

Despite the longstanding debate on definitions of health and disease concepts, and the multitude of accounts that have been developed, no consensus has been reached. This is problematic, as the way we define health and disease has far-reaching practical consequences. In recent contributions it is proposed to view health and disease as practical- and plural concepts. Instead of searching for a general definition, it is proposed to stipulate context-specific definitions. However, it is not clear how this should be realized. In (...) this paper, we review recent contributions to the debate, and examine the importance of context-specific definitions. In particular, we explore the usefulness of analyzing the relation between the practical function of a definition and the context it is deployed in. We demonstrate that the variety of functions that health and disease concepts need to serve makes the formulation of monistic definitions not only problematic but also undesirable. We conclude that the analysis of the practical function in relation to the context is key when formulating context-specific definitions for health and disease. At last, we discuss challenges for the pluralist stance and make recommendations for future research. (shrink)

Neither traditional philosophy nor current applied ethics seem able to cope adequately with the highly dynamic character of our modern technological culture. This is because they have insufficient insight into the moral significance of technological artifacts and systems. Here, much can be learned from recent science and technology studies. They have opened up the black box of technological developments and have revealed the intimate intertwinement of technology and society in minute detail. However, while applied ethics is characterized by a certain (...) “technology blindness,” the most influential approaches within STS show a “normative deficit” and display an agnostic or even antagonistic attitude toward ethics. To repair the blind spots of both applied ethics and STS,the authors sketch the contours of a pragmatist approach. They will explore the tasks and tools of a pragmatist ethics and pay special attention to the exploration of future worlds disclosed and shaped by technology and the management of deep value conflicts inherent to a pluralist society. (shrink)

In the hope of future treatments to prevent or slow down the disease, there is a strong movement towards an ever-earlier detection of Alzheimer's disease. In conjunction with scientific developments, this has prompted a reconceptualization of AD, as a slowly progressive pathological process with a long asymptomatic phase. New concepts such as "preclinical" and "prodromal" AD have been introduced, raising a number of conceptual and ethical questions. We evaluate whether these new concepts are theoretically defensible, in light of theories of (...) health and disease, and whether they should be understood as disease or as an at-risk state. We introduce a pragmatic view on disease concepts and argue that an evaluation of the reconceptualization of AD should also take its aims and effects into account, and assess their ethical acceptability. The reconceptualization of AD is useful to coordinate research into preventive strategies, and may potentially benefit future patients. However, in the short term, early detection and labelling of "preclinical AD" can potentially harm people. Since there is no treatment available and the predictive value is unclear, it may only create a group of "patients in waiting" who may suffer from anxiety, uncertainty and stigmatization, but will never actually develop dementia. We conclude that only if the promise of preventive medication materializes, will the reconceptualization of AD turn out unequivocally to be for the better. Otherwise, the reconceptualization may do more harm than good. (shrink)

The hopes and fears expressed in the debate on human enhancement are not always based on a realistic assessment of the expected possibilities. Discussions about extreme scenarios may at times obscure the ethical and policy issues that are relevant today. This paper aims to contribute to an adequate and ethically sound societal response to actual current developments. After a brief outline of the ethical debate concerning neuro-enhancement, it describes the current state of the art in psychopharmacological science and current uses (...) of psychopharmacological enhancement, as well as the prospects for the near future. It then identifies ethical issues regarding psychopharmacological enhancements that require attention from policymakers, both on the professional and on the governmental level. These concern enhancement research, the gradual expansion of medical categories, off-label prescription and responsibility of doctors, and accessibility of enhancers on the Internet. It is concluded that further discussion on the advantages and drawbacks of enhancers on a collective social level is still needed. (shrink)

Recently there has been some discussion concerning a particular type of enhancement, namely ‘moral enhancement’. However, there is no consensus on what precisely constitutes moral enhancement, and as a result the concept is used and defined in a wide variety of ways. In this article, we develop a clarificatory taxonomy of these definitions and we identify the criteria that are used to delineate the concept. We think that the current definitions can be distinguished from each other by the criteria used (...) for determining whether an intervention is indeed moral enhancement. For example, some definitions are broad and include moral enhancement by any means, while other definitions focus only on moral enhancement by means of specific types of intervention. Moreover, for some definitions it suffices for an intervention to be aimed or intended to morally enhance a person, while other definitions only refer to ‘moral enhancement’ in relation to interventions that are actually effective. For all these differences in definitions we discuss some of their implications. This shows that definitions are significantly less descriptive and more normative than they are regularly portrayed to be. We therefore hope that the taxonomy developed in this paper and the comments on the implications for the normative debate of the variety of definitions will provide conceptual clarity in a complex and highly interesting debate. (shrink)

Deep Brain Stimulation (DBS) is a treatment involving the implantation of electrodes into the brain. Presently, it is used for neurological disorders like Parkinson’s disease, but indications are expanding to psychiatric disorders such as depression, addiction and Obsessive Compulsive Disorder (OCD). Theoretically, it may be possible to use DBS for the enhancement of various mental functions. This article discusses a case of an OCD patient who felt very happy with the DBS treatment, even though her symptoms were not reduced. First, (...) it is explored if the argument that ‘doctors are not in the business of trading happiness’, as used by her psychiatrist to justify his discontinuation of the DBS treatment, holds. The relationship between enhancement and the goals of medicine is discussed and it is concluded that even though the goals of medicine do not set strict limits and may even include certain types of enhancement, there are some good reasons for limiting the kind of things doctors are required or allowed to do. Next, the case is discussed from the perspective of beneficence and autonomy. It is argued that making people feel good is not the same as enhancing their well-being and that it is unlikely—though not absolutely impossible—that the well-being of the happy OCD patient is really improved. Finally, some concerns regarding the autonomy of a request made under the influence of DBS treatment are considered. (shrink)

Brain-machine interfaces are a growing field of research and application. The increasing possibilities to connect the human brain to electronic devices and computer software can be put to use in medicine, the military, and entertainment. Concrete technologies include cochlear implants, Deep Brain Stimulation, neurofeedback and neuroprosthesis. The expectations for the near and further future are high, though it is difficult to separate hope from hype. The focus in this paper is on the effects that these new technologies may have on (...) our ‘symbolic order’—on the ways in which popular categories and concepts may change or be reinterpreted. First, the blurring distinction between man and machine and the idea of the cyborg are discussed. It is argued that the morally relevant difference is that between persons and non-persons, which does not necessarily coincide with the distinction between man and machine. The concept of the person remains useful. It may, however, become more difficult to assess the limits of the human body. Next, the distinction between body and mind is discussed. The mind is increasingly seen as a function of the brain, and thus understood in bodily and mechanical terms. This raises questions concerning concepts of free will and moral responsibility that may have far reaching consequences in the field of law, where some have argued for a revision of our criminal justice system, from retributivist to consequentialist. Even without such a (unlikely and unwarranted) revision occurring, brain-machine interactions raise many interesting questions regarding distribution and attribution of responsibility. (shrink)

The use of psychopharmaceuticals to enhance human mental functioning such as cognition and mood has raised a debate on questions regarding identity and authenticity. While some hold that psychopharmaceutical substances can help users to ‘become who they really are’ and thus strengthen their identity and authenticity, others believe that the substances will lead to inauthenticity, normalization, and socially-enforced adaptation of behaviour and personality. In light of this debate, we studied how persons who actually have experience with the use of psychopharmaceutical (...) medication would view their ‘self’ or their authentic personal identity in relation to the use of medication. We have interviewed a number of adults diagnosed with ADHD and discussed their experiences with medication use in relation to their conceptions of self and identity. In the first part of this paper we illustrate that the concepts of identity and authenticity play an important and sometimes problematic role in experiences of ADHD adults. This shows that the question about identity and psychopharmacology is not merely an ‘academic’ issue, but one that influences everyday lives of real people. In order to answer the question whether psychopharmaceuticals threaten personal identity and authenticity, more than empirical research is needed. We also need to analyse the concepts of personal identity, authenticity and self: what do we mean when we are using statements as ‘a way of living that is uniquely our own’, ‘our true self’, or ‘who we really are’? In the second part of this paper we discuss two important philosophical views on personal identity, authenticity and self: the self-control view as elaborated by Frankfurt, and the self-expression view as proposed by Schechtman. We compare these with the experiences of our respondents to see which view can help us to understand the diverse and often conflicting experiences that people have with medication for ADHD. This will contribute to a better understanding of whether and in which cases personal identity and authenticity are threatened by psychopharmacology. (shrink)

In this article we examine the effectiveness of consent in data protection legislation. We argue that the current legal framework for consent, which has its basis in the idea of autonomous authorisation, does not work in practice. In practice the legal requirements for consent lead to ‘consent desensitisation’, undermining privacy protection and trust in data processing. In particular we argue that stricter legal requirements for giving and obtaining consent as proposed in the European Data protection regulation will further weaken the (...) effectiveness of the consent mechanism. Building on Miller and Wertheimer’s ‘Fair Transaction’ model of consent we will examine alternatives to explicit consent. (shrink)

One argument that is frequently invoked against the technological enhancement of human functioning is that it is morally suspect, or even wrong, to take an easy shortcut. Some things that usually take effort, endurance or struggle can come easily with the use of an enhancer. This paper analyses the various arguments that circle round the idea that enhancement of human functioning is problematic because of the 'easy shortcut' that it offers. It discusses the concern that quick fixes lead to corrosion (...) of character and the idea that suffering, pain, hard work and effort are essential for real and worthy achievements, and argues that these views are largely mistaken. Next, the paper argues that the core worry about taking an easy shortcut is that it makes us lose sight of the complexities of our means and ends; in other words, the argument warns against reducing the richness of human activities. A vocabulary of 'practices', 'internal goods' and 'focal engagement' will be used to articulate this argument further. The conclusion is that the easy shortcut argument has no general validity as an argument against enhancement 'as such'. The paper urges us, however, to evaluate enhancement technologies not only in terms of their efficiency in reaching certain goals but also in terms of their contribution to intrinsically worthwhile human activities. It can point out some of the caveats, as well as the opportunities, of the use of enhancement technologies. (shrink)

Alzheimer’s Disease (AD) provides an excellent case study to investigate emerging conceptions of health, disease, pre-disease, and risk. Two scientific working groups have recently reconceptualized AD and created a new category of asymptomatic biomarker positive persons, who are either said to have preclinical AD, or to be at risk for AD. This article examines how prominent theories of health and disease would classify this condition: healthy or diseased? Next, the notion of being “at risk”—a state somewhere in-between health and disease—is (...) considered from various angles. It is concluded that medical-scientific developments urge us to let go of dichotomous ways of understanding disease, that the notion of “risk,” conceptualized as an increased chance of getting a symptomatic disease, might be a useful addition to our conceptual framework, and that we should pay more attention to the practical usefulness and implications of the ways in which we draw lines and define concepts. (shrink)

Lies and deception are often used in the care for demented elderly and often with the best intentions. However, there is a strong moral presumption against all forms of lying and deceiving. The goal of this article is to examine and evaluate concrete examples of deception and lies in dementia care, while addressing some fundamental issues in the process.It is argued that because dementia slowly diminishes the capacities one needs to distinguish between truths and falsehoods, the ability to be lied (...) to also disappears. When the moral reasons to reject lying are explored, it becomes clear that most of them also hold where demented patients are concerned, though this also depends on the capacities of the patient. Lying, though prima facie wrong, can sometimes be justified with an appeal to well-being. The relationship between well-being and the truth is further explored. Two examples of deceiving demented patients for reasons of beneficence are discussed, from which it can be concluded that although in some cases beneficent lies or deception will not enhance patients’ well-being, there are circumstances in which they do. In general, methods that enhance the well-being of the patient without deception or lies should be favored above options that use deceit, and methods of getting the truth across without hurting the patient should be favored above blunt honesty. Finally, it is important to note that not only the patient but also the nursing and medical staff can be affected by the use of lies and deception. (shrink)

The American Journal of Bioethics, Volume 11, Issue 6, Page 43-44, June 2011.

The notion of a “third food regime” implies simultaneous processes of further global concentration and integration and at the same time resistance through new emerging producer–consumer relations. This paper examines these processes by looking at Austria over the last 30 years. While direct producer–consumer cooperatives established at an early point, today forms of community supported agriculture are rare. This paper explains this by identifying a shift of the entire food system from “food from nowhere” to “food from here.” The account (...) follows the early emergence of alternative food networks through the political appeal to consumer patriotism in connection with Austria joining the EU, to a sustained positioning of retail chains with regional and national food products. The paper argues that this satisfies the needs of a large proportion of consumers and discourages the emergence of new food initiatives. The paper follows the development of different approaches and their transformations until today. Thus a picture evolves of changing, and partly progressing consumer–producer relations in response to wider societal and political transformation processes. The results explain why the movement towards CSA is currently weak in Austria, but demonstrate at the same time how alternative food networks may contribute to a transformation of the food system. (shrink)

A central issue in the ethical debate on psychopharmacological enhancers concerns the distinction between therapy and enhancement. Although from a theoretical point of view it is difficult to make a clear-cut distinction between treatment on the one hand, and enhancement on the other, in medical practice and policy debates the counter-positioning of therapy to enhancement is clearly at work. Especially pharmaceutical companies have an interest in occupying the "grey" area between normal and abnormal, treatment and enhancement. This article discusses the (...) dynamics of the treatment-enhancement distinction, and argues that practices that could be labelled "enhancement" can also be understood in terms of medicalisation and "disease mongering". The argument is supported by results from a qualitative empirical study into the experiences and opinions of adults diagnosed with Attention Deficit Hyperactivity Disorder. Patients are ambivalent about how to understand ADHD: as a disease, a disorder or a normal variation. Intervention with psychopharmacological means can also be understood in different ways. From an insider perspective it is conceived of as a "normalising" of functioning, whereas from an outsider perspective it can be understood as medicalisation of underperformance, or indeed as performance enhancement. This draws attention to new moral issues which are important but under-recognised in the enhancement debate, and which are related to medicalisation. (shrink)

Rahimzadeh et al. (2023) provide an interesting and timely discussion of the role of large language models (LLMs) in ethics education. While mentioning broader educational goals, the paper’s main f...

Human enhancement is the term used for applications of biomedical knowledge that aim to improve human form or functioning beyond what is necessary to restore or sustain good health. Genomics is one of the research-areas that promises to offer such possibilities in the near future, and body weight - especially over-weight and obesity - is one of the human characteristics at which these will be directed. This paper offers an overview of some of the moral issues that the subject of (...) enhancement raises when related to obesity and genomics. After a brief discussion of the different perspectives on obesity and on the meaning of the term enhancement, a framework is presented in which the moral issues at stake are organised according to perspective on obesity (health or aesthetics) and moral outlook (distributive justice vs private morality). An inventory is made of the different ethical discussions that possible future genomics-based options for the prevention or treatment of obesity and overweight may evoke. These include justice, obligations with regard to life-style, the limits of medical practice and the value of food and food-cultures. Finally, some speculations are made with regard to future possibilities for genetic modification and "self-evolution". (shrink)

:In this article, we consider contexts or domains in which moral bioenhancement interventions possibly or most likely will be implemented. By looking closely at similar or related existing practices and their relevant ethical frameworks, we hope to identify ethical considerations that are relevant for evaluating potential moral bioenhancement interventions. We examine, first, debates on the proper scope of moral education; second, proposals for identifying early risk factors for antisocial behaviour; and third, the difficult balancing of individual freedom and third party (...) concerns in psychiatry. In imagining moral bioenhancement in practice, we observe that unlike other forms of enhancement, moral enhancement fundamentally asks how the interests and preferences of the individual and the interests of others should be weighed. Highly diverse domains such as education, mental health, and the judicial domain might be involved, and moral bioenhancement might challenge existing institutional settings. Given these highly varied contexts and domains, it appears unlikely that there will be a distinct set of practices that will be referred to as “moral bioenhancement.”. (shrink)

To gain insight into the reasons that the public may have for endorsing or eschewing pharmacological moral enhancement for themselves or for others, we used empirical tools to explore public attitudes towards these issues. Participants from the United States were recruited via Amazon’s Mechanical Turk and were randomly assigned to read one of several contrastive vignettes in which a 13-year-old child is described as bullying another student in school and then is offered an empathy-enhancing program. The empathy-enhancing program is described (...) as either involving taking a pill or playing a video game on a daily basis for four weeks. In addition, participants were asked to imagine either their own child bullying another student at school, or their own child being bullied by another student. This resulted in a 2 × 2 between-subjects design. In an escalating series of morally challenging questions, we asked participants to rate their overall support for the program; whether they would support requiring participation; whether they would support requiring participation of children who are at higher risk to become bullies in the future; whether they would support requiring participation of all children or even the entire population; and whether they would be willing to participate in the program themselves. We found that people were significantly more troubled by pharmacological as opposed to non-pharmacological moral enhancement interventions. The results indicate that members of the public for the greater part oppose pharmacological moral bioenhancement, yet are open to non-biomedical means to attain moral enhancement. [248 words]. (shrink)