It is commonly held that respect for autonomy is one of the most important principles in medical ethics. However, there are a number of interpretations as to what that respect actually entails in practice and a number of constraints have been suggested even on our self-regarding choices. These limits are often justified in the name of autonomy. In this paper, it is argued that these different interpretations can be explained and understood by looking at the discussion from the viewpoints of (...) positive and negative liberty and the various notions of a “person” that lay beneath. It will be shown how all the appeals to positive liberty presuppose a particular value system and are therefore problematic in multicultural societies. (shrink)

In the philosophy of well-being, there is hardly anything written on the lives of people with autism or on the question whether existing philosophical theories of well-being are suited for understanding how well the lives of autistic persons are going. This paper tries to make some progress towards filling this gap. I start by giving a concise account of autism, which highlights the huge heterogeneity among autistics. I discuss some basic features of autism, ask whether there are good reasons why (...) we would need an account of well-being specifically for autistics and what philosophical well-being research could learn from being informed by autistic experiences and phenomenology. I then investigate to what extent the capability approach gives us a helpful theory of well-being for autistics, and what looking through an autism-lens can contribute to the further development of the capabilitarian well-being. In particular, I show that some capabilities that are crucially relevant for autistics are also relevant for the lives of non-autistic people. The final part of the paper looks at an important difficulty in using the capabilitarian account of well-being for autistics, namely: should the normative focus be on achievements (functionings) or real opportunities (capabilities)? (shrink)

The increased recognition and reported prevalence of autism spectrum disorders combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a cure, (...) sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on “top-down” imposition of professional expertise, but rather on a “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD. (shrink)

The aim of this article is to compare the theories of Isaiah Berlin and Charles Taylor with regard to the topic of freedom. I will argue that Berlin’s famous positive-negative distinction still serves an important purpose by maintaining a crucial tension within the concept of liberty. This tension allows ethical pluralism to be taken seriously instead of being covered up by ideological retorics. Berlin held that the implementation of positive liberty – defining the boundaries of true liberty – is always (...) problematic. Taylor, however, tries to by-pass the gap between negative and positive liberty by means of his concept of authenticity. I will argue that this notion is a sound descriptive term for an individual’s entrenchment in community, but that the normative appeal from authenticity amounts to a project of ‘re-sourcing the self’ which is ultimately rooted in an optimist perspective on pluralism and multiculturalism. However, to the extent that there are indeed different communities with different values and different ways of being authentic, it is worthwhile to repeat the Berlinian Grundgedanke that human beings should cope with the inexorable and irreducible tragedy in moral life. (shrink)

This paper problematizes contemporary cultural understandings of autism. We make use of the developmental psychology concepts of ‘Theory of Mind’ and ‘mindblindness’ to uncover the meaning of autism as expressed in these concepts. Our concern is that autism is depicted as a puzzle and that this depiction governs not only the way Western culture treats autism but also the way in which it governs everyday interactions with autistic people. Moreover, we show how the concepts of Theory of Mind and mindblindness (...) require autism to be a puzzle in the first place. Rather than treat autism as a puzzle that must be solved, we treat autism as a teacher and thus as having something valuable to contribute toward an understanding of the inherent partiality and uncertainty of human communication and collective life. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects. In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

History's judgment on the success of bioethics will not depend solely on the conceptual creativity and innovation in the field at the level of ethical and political theory, but this intellectual work is not insignificant. One important new development is what I shall refer to as the relational turn in bioethics. This development represents a renewed emphasis on the ideographic approach, which interprets the meaning of right and wrong in human actions as they are inscribed in social and cultural practices (...) and in structures of lived meaning and interdependence; in an ideographic approach, the task of bioethics is to bring practice into theory, not the other way around. The relational turn in bioethics may profoundly affect the critical questions that the field asks and the ethical guidance it offers society, politics, and policy. The relational turn provides a way of correcting the excessive atomism of many individualistic perspectives that have been, and continue to be, influential in bioethics. Nonetheless, I would argue that most of the work reflecting the relational turn remains distinctively liberal in its respect for the ethical significance of the human individual. It moves away from individualism, but not from the value of individuality.In this review essay, I shall focus on how the relational turn has manifested itself in work on core concepts in bioethics, especially liberty and autonomy. Following a general review, I conclude with a brief consideration of two important recent books in this area: Jennifer Nedelsky's Law's Relations and Rachel Haliburton's Autonomy and the Situated Self. (shrink)

Lying is a common phenomenon amongst human beings. It seems to play a role in making social interactions run more smoothly. Too much honesty can be regarded as impolite or downright rude. Remarkably, lying is not a common phenomenon amongst normally intelligent human beings who are on the autism spectrum. They appear to be ‘attractively morally innocent’ and seem to have an above average moral conscientious objection against deception. In this paper, the behavior of persons with autism with regard to (...) deception and truthfulness will be discussed in the light of two different ethical theories, illustrated by fragments from autobiographies of persons with autism. A systemizing ‘Kantian’ and an empathizing ‘ethics of care’ perspective reveal insights on high-functioning autism, truthfulness and moral behavior. Both perspectives are problematic from the point of view of a moral agent with autism. High-functioning persons with autism are, generally speaking, strong systemizes and weak empathizers. Particularly, they lack ‘cognitive empathy’ which would allow them to understand the position of the other person. Instead, some tend to invent a set of rules that makes their behavior compatible with the expectations of others. From a Kantian point of view, the autistic tendency to always tell the truth appears praiseworthy and should not be changed, though it creates problems in the social life of persons with autism. From a care ethics perspective, on the other hand, a way should be found to allow the high-functioning persons with autism to respect the feelings and needs of other persons as sometimes overruling the duty of truthfulness. We suggest this may even entail ‘morally educating’ children and adolescents with autism to become socially skilled empathic ‘liars’. (shrink)

This article argues that autistic people occasionally experience greater comfort from imposed routines than from a yielding form of love and understanding, which I will call naive humanism. Collins's theory of action, with its attention toward the achievements residing in a reductionist approach, can help to point out the flaws of a naive humanistic stance. It would, however, be a mistake to stop at this point and remain satisfied with the problem-solving capacity of such a reductionist stance. In a ward (...) for autistic youths, the risk of cruelty resides in a purely mechanistic stance as much as in a naive humanistic approach. Thus, the social context of care of autistic people urges us to question the scope of a traditional scheme of thought, which cherishes a deep distinction between humans and machines. (shrink)

This paper focuses on a hypothetical case that represents an intervention request familiar to those who work with individuals with intellectual disability. Stacy has autism and moderate intellectual disability. Her parents have requested treatment for her hand flapping. Stacy is not competent to make her own treatment decisions; proxy consent is required. There are three primary justifications for proxy consent: the right to an open future, substituted judgment, and the best interest standard. The right to an open future justifies proxy (...) consent on the assumption of future autonomy whereas substituted judgment justifies proxy consent via reference to past autonomy. Neither applies. Stacy has not been, nor will she be, competent to make her own treatment decisions. The best interest standard justifies proxy consent on the grounds of beneficence. It is unlikely that hand flapping harms Stacy. None of the three primary means of justifying proxy consent apply to Stacy’s case. (shrink)

Khader offers a deliberative perfectionist approach to identifying and responding to adaptive preferences-- deprived people's preferences that perpetuate their deprivation.

Michelle Garcia Winner’s Social Thinking Curriculum is widely used by schools across the USA and has garnered attention internationally. The curriculum addresses social language and behavior deficits among those on the autism spectrum. Although many embrace this curriculum without reservation, the emphasis on social conformity, including avoiding behaviors that make others uncomfortable, merits scrutiny. Individuals who have difficulty understanding social cues and conventions can derive tremendous benefit from learning to fit in, for example, or learning what is likely to make (...) others uncomfortable and why. However, too much emphasis on pleasing others can reinforce undesirable tendencies. For example, autism is already linked to avoidant personality disorder. An emphasis on avoiding making others uncomfortable may also inhibit the development of principled ethical thinking and action. Reframing social thinking to treat it not (or not only) as an end in itself, but as a way to achieve a variety of social and personal goals would go a long way toward addressing the weaknesses of the Social Thinking Curriculum. (shrink)