Chong-Ming Lim. Accommodating Autistics and Treating Autism: Can We Have Both?
2015, Bioethics 29(8), 1-9
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Added by: Björn FreterAbstract: One of the central claims of the neurodiversity movement is that society should accommodate the needs of autistics, rather than try to treat autism. People have variously tried to reject this accommodation thesis as applicable to all autistics. One instance is Pier Jaarsma and Stellan Welin, who argue that the thesis should apply to some but not all autistics. They do so via separating autistics into high‐ and low‐functioning, on the basis of IQ and social effectiveness or functionings. I reject their grounds for separating autistics. IQ is an irrelevant basis for separating autistics. Charitably rendering it as referring to more general capacities still leaves us mistaken about the roles they play in supporting the accommodation thesis. The appeal to social effectiveness or functionings relies on standards that are inapplicable to autistics, and which risks being deaf to the point of their claims. I then consider if their remaining argument concerning autistic culture may succeed independently of the line they draw. I argue that construing autistics' claims as beginning from culture mistakes their status, and may even detract from their aims. Via my discussion of Jaarsma and Welin, I hope to point to why the more general strategy of separating autistics, in response to the accommodation thesis, does not fully succeed. Finally, I sketch some directions for future discussions, arguing that we should instead shift our attention to consider another set of questions concerning the costs and extent of change required to accommodate all autistics.
Chong-Ming Lim, Michael C. Dunn, Jacqueline J. Chin. Clarifying the best interests standard: the elaborative and enumerative strategies in public policy-making
2016, Journal of Medical Ethics 42(8), 1-8
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Added by: Björn FreterAbstract: One recurring criticism of the best interests standard concerns its vagueness, and thus the inadequate guidance it offers to care providers. The lack of an agreed definition of ‘best interests’, together with the fact that several suggested considerations adopted in legislation or professional guidelines for doctors do not obviously apply across different groups of persons, result in decisions being made in murky waters. In response, bioethicists have attempted to specify the best interests standard, to reduce the indeterminacy surrounding medical decisions. In this paper, we discuss the bioethicists’ response in relation to the state's possible role in clarifying the best interests standard. We identify and characterise two clarificatory strategies employed by bioethicists —elaborative and enumerative—and argue that the state should adopt the latter. Beyond the practical difficulties of the former strategy, a state adoption of it would inevitably be prejudicial in a pluralistic society. Given the gravity of best interests decisions, and the delicate task of respecting citizens with different understandings of best interests, only the enumerative strategy is viable. We argue that this does not commit the state to silence in providing guidance to and supporting healthcare providers, nor does it facilitate the abuse of the vulnerable. Finally, we address two methodological worries about adopting this approach at the state level. The adoption of the enumerative strategy is not defeatist in attitude, nor does it eventually collapse into (a form of) the elaborative strategy.
Comment: Requires basic knowledge of the 'best interests standard', and very basic knowledge of the central claims of political liberalism. Best discussed alongside other standards of decision making for those who cannot decide for themselves.
Jackson, Jennifer. Ethics in medicine: Virtue, Vice and Medicine
2006, Cambridge: Polity.
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Publisher’s Note: Publisher: How, in a secular world, should we resolve ethically controversial and troubling issues relating to health care? Should we, as some argue, make a clean sweep, getting rid of the Hippocratic ethic, such vestiges of it as remain? Jennifer Jackson seeks to answer these significant questions, establishing new foundations for a traditional and secular ethic which would not require a radical and problematic overhaul of the old. These new foundations rest on familiar observations of human nature and human needs. Jackson presents morality as a loose anatomy of constituent virtues that are related in different ways to how we fare in life, and suggests that in order to address problems in medical ethics, a virtues–based approach is needed. Throughout, attention is paid to the role of philosophy in medical ethics, and how it can be used to clarify key notions and distinctions that underlie current debates and controversial issues. By reinstating such concepts as justice, cardinal virtue, and moral duty, Jackson lays the groundwork for an ethics of health care that makes headway toward resolving seeming dilemmas in medical ethics today. This penetrating and accessible book will be invaluable to students of sociology and health care, as well as those who are interested in the ethical uncertainties faced by the medical world.
Comment: Particularly useful in teaching is Chapter 10 which discusses abortion, reviewing arguments made by J.J. Thompson and M. Tooley, and enquiring into what makes killing wrong. Chapter 9 looks at distributive justice in medicine, reviewing some problematic cases and distinguishing between bad luck and injustice. Chapter 5 treats on conscientious objection and issues related to toleration and imposition of values.
Jackson, Jennifer. Truth, trust and medicine
2001, London: Routledge.
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Publisher’s Note: Publisher: Truth, Trust and Medicine investigates the notion of trust and honesty in medicine, and questions whether honesty and openness are of equal importance in maintaining the trust necessary in doctor-patient relationships. Jackson begins with the premise that those in the medical profession have a basic duty to be worthy of the trust their patients place in them. Yet questions of the ethics of withholding information and consent and covert surveillance in care units persist. This book boldly addresses these questions which disturb our very modern notions of a patient's autonomy, self-determination and informed consent.
Comment: This text is best used as a further reading in medical, professional and applied ethics courses. It is very detailed and thorough in its approach, but some chapters can be used as more introductory standalone texts. In particular, chapters 3 and 4 offer a good discussion on 'Why truthfulness matters' and 'What truthfulness requires', and chapters 2 and 9 look critically at lying or withholding information for the benefit of the patient.
Kittay, Eva Feder. Forever Small: The Strange Case of Ashley X
2011, Hypatia, 26 (3): 610-631.
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Added by: Rochelle DuFordAbstract: I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child 'forever small.' The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay 'forever small' and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments.
Comment: This reading both introduces the controversial case of Ashley X and also provides a set of ethical considerations concerning altering the bodies of persons with severe cognitive disabilities. It would serve as an excellent introduction to a unit on disability, a unit on the ethics of care, or concerning the limits of parental paternalism.
Kuhse, Helga. The Sanctity-of-Life Doctrine in Medicine: A Critique
1987, Oxford University Press.
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Added by: Clotilde Torregrossa, Contributed by: Simon FoktPublisher's Note: According to the "sanctity-of-life" view, all human lives are equally valuable and inviolable, and it would be wrong to base life-and-death medical decisions on the quality of the patient's life. Examining the ideas and assumptions behind the sanctity-of-life view, Kuhse argues against the traditional view that allowing someone to die is morally different from killing, and shows that quality-of-life judgments are ubiquitous. Refuting the sanctity-of-life view, she provides a sketch of a quality-of-life ethics based on the belief that there is a profound difference between merely being alive and life being in the patient's interest.
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O'Neill, Onora. Some limits of informed consent
2003, Journal of Medical Ethics 29 (1):4-7
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Added by: Simon FoktAbstract: Many accounts of informed consent in medical ethics claim that it is valuable because it supports individual autonomy. Unfortunately there are many distinct conceptions of individual autonomy, and their ethical importance varies. A better reason for taking informed consent seriously is that it provides assurance that patients and others are neither deceived nor coerced. Present debates about the relative importance of generic and specific consent (particularly in the use of human tissues for research and in secondary studies) do not address this issue squarely. Consent is a propositional attitude, so intransitive: complete, wholly specific consent is an illusion. Since the point of consent procedures is to limit deception and coercion, they should be designed to give patients and others control over the amount of information they receive and opportunity to rescind consent already given.
Comment: A great introductory text offering a short overview of the problems related to consent. The point regarding the intransitivity of consent is likely to inspire interesting discussions. As the paper is quite short, it can easily be used in conjunction with other texts.
Sherman, Nancy. From Nuremberg to Guantánamo: Medical Ethics Then and Now
2007, Washington University Global Studies Law Review 6(3): 609-619.
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Added by: John BaldariAbstract: On October 25, 1946, three weeks after the International Military Tribunal at Nuremberg entered its verdicts, the United States established Military Tribunal I for the trial of twenty-three Nazi physicians. The charges, delivered by Brigadier General Telford Taylor on December 9, 1946, form a seminal chapter in the history of medical ethics and, specifically, medical ethics in war. The list of noxious experiments conducted on civilians and prisons of war, and condemned by the Tribunal as war crimes and as crimes against humanity, is by now more or less familiar. That list included: high-altitude experiments; freezing experiments; malaria experiments; sulfanilamide experiments; bone, muscle, and nerve regeneration and bone transplantation experiments; sea water experiments; jaundice and spotted fever experiments; sterilization experiments; experiments with poison and with incendiary bombs. What remains less familiar is the moral mindset of doctors and health care workers who plied their medical skill for morally questionable uses in war. In his 1981 work, The Nazi Doctors, Robert Jay Lifton took up that question, interviewing doctors, many of whom for forty years continued to distance themselves psychologically from their deeds. The questions about moral distancing Lifton raised (though not the questions about criminal experiments) have immediate urgency for us now. Military medical doctors, psychiatrists and psychologists serve in U.S. military prisons in Guantánamo, Abu Ghraib, Kandahar, and, until very recently, in undisclosed CIA operated facilities around the world where medical ethics are again at issue. Moreover, they serve in top positions in the Pentagon, as civilian and military heads of command, who pass orders and regulations to military doctors in the field, and who are in charge of the health of enemy combatants, as well as U.S. soldiers. Because we recently marked the sixtieth anniversary of the judgment at Nuremberg, I want to awaken our collective memory to the ways in which doctors in war, even in a war very different from the one the Nazis fought, can insulate themselves from their moral and professional consciences.
Comment: This text is best used as an additional reading in bioethics, or in just war theory (post ad bellum).
Sherwin, Susan. No Longer Patient: Feminist Ethics and Health Care
1992, Temple University Press.
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Added by: Clotilde Torregrossa, Contributed by: Simon FoktIntroduction: This book attempts to deepen common understandings of what considerations are relevant in discussions of bioethics. It is meant to offer a clearer picture of what morally acceptable health care might look like. I argue that a feminist understanding of the social realities of our world is necessary if we are to recognize and develop an adequate analysis of the ethical issues that arise in the context of health care.
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Slowther, Anne. Truth-telling in health care
2009, Clinical Ethics 4 (4):173-175.
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Added by: Clotilde Torregrossa, Contributed by: Simon FoktAbstract: This article is about the description of all the situations in which clinician find difficult to tell the truth to patients regarding their condition. Moral importance of telling the truth is recognized in both moral theory and in the practical reality of everyday living. However, empirical studies continue to show that health- care professional identify the question of truth-telling and disclosure as a source of moral and psychological discomfort in many situations. Other situation creating difficulties for clinicians are not related directly to the patient's wants or needs regarding their illness but to wider issues such as disclosure of medical error and identifying poor performance in colleagues.
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Warren, Mary Anne. On the Moral and Legal Status of Abortion
1973, The Monist, 57 (4): 43-61.
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Added by: Rochelle DuFordSummary: This paper is a response to Thomson's influential defense of abortion. Warren argues that Thomson is mistaken that if a fetus has full moral rights, then abortion is still morally permissible. Warren, instead, argues that while fetuses participate in genetic humanity, they do not participate in the category of personhood (the category which defines the moral community). For this reason, abortion is always morally permissible and thus ought to be legally permissible.
Comment: This reading is a good response to Thomson's influential violinist case. The text is a bit complex, and would be better suited for a course that considered issues of abortion and infanticide in an in depth way.
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Comment: Starting point for adjudicating the disagreements about how to address the justice claims by disability (and disabled) activists more generally. Requires basic knowledge of the disability rights movement in general, and neurodiversity movement in particular.