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)
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)
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)
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)
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 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)
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)
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 (of disease) on the one hand, and enhancement (of normal functioning) 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 (ADHD). 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)
It may seem paradoxical to speak of the âgoodlifeâ 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 â subjective preference theory, objectivist theories, and hedonism â 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 âthe good lifeâ 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)
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)
