Stellan Welin

Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement

Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals.

Reply: Ethical Perspectives on Living Donor Organ Transplantation in Asia

Live donors are a continuing source of organ grafts for solid organ transplantation in Asia. Ethical issues surrounding the development of living donor organ transplantation in Eastern countries are different from those in Western countries. Donor safety is still the paramount concern in any donor operation. Issues on organ trafficking remain societal concerns in low-income nations. Religion, cultural background, economic prerogatives, and timely legislation contribute to the social acceptance and maturation of organ donation.

The ethics of non-heart-beating donation: how new technology can change the ethical landscape

The global shortage of organs for transplantation and the development of new and better medical technologies for organ preservation have resulted in a renewed interest in non-heart-beating donation (NHBD). This article discusses ethical questions related to controlled and uncontrolled NHBD. It argues that certain preparative measures, such as giving anticoagulants, should be acceptable before patients are dead, but when they have passed a point where further curative treatment is futile, they are in the process of dying and they are unconscious. Furthermore, the article discusses consequences of technological developments based on improvement of a chest compression apparatus used today to make mechanical heart resuscitation. Such technological development can be used to transform cases of non-controlled NHBD to controlled NHBD. In our view, this is a step forward since the ethical difficulties related to controlled NHBD are easier to solve than those related to non-controlled NHBD. However, such technological developments also evoke other ethical questions.

The morality of scientific openness.

The ideal of scientific openness — i.e. the idea that scientific information should be freely accessible to interested parties — is strongly supported throughout the scientific community. At the same time, however, this ideal does not appear to be absolute in the everyday practice of science. In order to get the credit for new scientific advances, scientists often keep information to themselves. Also, it is common practice to withhold information obtained in commissioned research when the scientist has agreed with his or her employer to do so. The secrecy may be intended for ever, as in the military area, but also temporarily until a patent application has been made. The paper explores to what extent such secrecy is undesirable, as seems to be suggested by the ideal of scientific openness. Should this ideal be interpreted as having certain exceptions which make the above-mentioned practices acceptable? Are there, on closer inspection, good arguments for the ideal of scientific openness, and for officially upholding it? Possible versions of the ideal of scientific openness are explored and the issue is found to be rather complex, allowing for wide variations depending on the acting parties, beneficiaries, types of information and moral requirements involved. We conclude that the arguments usually given in favour of this ideal are weaker than what seems to be generally believed, and that, on closer inspection, they leave plenty of room for exceptions to it. These exceptions only partly cover the actual practice of withholding scientific information, and there may still be good reason to advocate, teach and enforce the ideal of scientific openness within the scientific community.

Starting clinical trials of xenotransplantation—reflections on the ethics of the early phase

What kind of patients may be recruited to early clinical trials of xenotransplantation? This is discussed under the assumption that the risk of viral infection to the public is non-negligible. Furthermore, the conditions imposed by the Helsinki declaration are analysed. The conclusion is that only patients at risk of dying and with no alternative treatment available should be recruited to xenotransplantation trials in the early phase. For some of the less dangerous cell or islet cell xenotransplantation other categories might be recruited. The risk of cell and islet cell xenotransplantation should, however, be weighted against the development of other technologies. In order to safeguard the public, the opt-out clause in the Helsinki declaration should not be fully applied. Legally binding rules on obligatory monitoring and restrictions should be imposed—before clinical trials start. Journal of Medical Ethics

Compensated Living Kidney Donation: A Plea for Pragmatism

Kidney transplantation is the most efficacious and cost-effective treatment for end-stage renal disease. However, the treatment’s accessibility is limited by a chronic shortage of transplantable kidneys, resulting in the death of numerous patients worldwide as they wait for a kidney to become available. Despite the implementation of various measures the disparity between supply and needs continues to grow. This paper begins with a look at the current treatment options, including various sources of transplantable kidneys, for end-stage renal disease. We propose, in accordance with others, the introduction of compensated kidney donation as a means of addressing the current shortage. We briefly outline some of the advantages of this proposal, and then turn to examine several of the ethical arguments usually marshaled against it in a bid to demonstrate that this proposal indeed passes the ethics test. Using available data of public opinions on compensated donation, we illustrate that public support for such a program would be adequate enough that we can realistically eliminate the transplant waiting list if compensation is introduced. We urge a pragmatic approach going forward; altruism in living kidney donation is important, but altruism only is an unsuccessful doctrine.

Living the categorical imperative: autistic perspectives on lying and truth telling–between Kant and care ethics

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’.

Cultured meat: will it separate us from nature?

In vitro meat, or cultured meat, is one of the ideas that are being proposed to help solve the problems associated with the ever growing global meat consumption. The prospect is a source or great moral hope, but also generates doubts and criticism. In this paper, we focus on worries about (1) the alleged unnaturalness of in vitro meat; and (2) the possible deterioration of our relations with nature and animals. We will argue that arguments about (un)naturalness take us to any conclusion we want. As to our relations with nature and animals, we think it more plausible that cultured meat will lead to improvement than to deterioration.

Ethical issues in human embryonic stem cell research

Since the possibility of deriving and maintaining human embryonic stem cells was first realized in 1998 (1), there has been great research activity in the area. In this issue Rygaard and Lindenberg review the potential for use of human stem cells and point out that the fertility clinic and labor ward play central roles in the derivation of human embryonic stem cells from fertilized eggs, as well as for other types of stem cells (2). It seems that obstetricians and gynecologists could play an important role in stem cell research as the ones who, in a sense, control an important ‘source’ for human stem cells. How should this role be played and what are the ethical issues? In this Commentary, I will first discuss the general ethical issues in human embryonic stem cell research and at the end return to the question of the role of the fertility clinic. I will not discuss the wider question: can the same cures and therapies be obtained using only adult stem cells (or some other technology such as, for instance, xenotransplantation of porcine cells). In other words, do we need human embryonic stem cell research in order to develop the therapies we want? There are essentially four focal points in the ethics discussion:

Priority setting in kidney transplantation: A qualitative study evaluating Swedish practices

Background: Transplantation is the treatment of choice for end-stage renal disease; it increases survival and quality of life, while being more cost-effective than dialysis. It is, however, limited by the scarcity of kidneys. The aim of this paper is to investigate the fairness of the priority setting process underpinning Swedish kidney transplantation in reference to the Accountability for Reasonableness (A4R) framework. Methods: Fifteen semi-structured interviews were carried out with transplant surgeons (7), nephrologists (6) and coordinators (2) representing centers nationwide. Collected data was analysed using thematic analysis. To assess fairness in the priority setting process, identified factors were assessed in the reference to the four conditions (publicity, relevance, revision and appeal, enforcement) forming the accountability for reasonableness framework. Results: Decision-making in assessment and allocation is based on clusters of factors. The factors appeal to various values, which are balanced against each other throughout the kidney allocation process: maximizing benefit, priority to the worst off and equality. The factors described by subjects and the values on which they rest satisfy the relevance condition of the accountability for reasonableness framework. However, two potential sources for unfair inequalities in access to treatment are identified: clinical judgment and institutional policies. Conclusions: The development of national guidelines both for assessing transplant candidacy, and for the allocation of kidneys from deceased donors, would contribute to standardize practices across centres; it will also help to better meet the conditions of fairness in reference to Accountability for Reasonableness. The benefits of this policy proposal in Swedish kidney transplantation merits consideration.