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  • Editorial Note
  • Rebecca Kukla

The lead article in this issue of the Kennedy Institute of Ethics Journal, Joseph Stramondo's "Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Preimplantation Genetic Diagnosis," takes up an issue that is at the center of the growing field of disability studies: what are the moral limits and possibilities when parents wish to use reproductive technologies in order to create a disabled child? This question has been of abstract interest for some time. But as technologies such as pre-implantation genetic diagnosis become increasingly accessible and reliable, and as disability theorists and activists bring growing cultural attention to the ways in which lives with disabilities can be distinctively valuable, the question has become increasingly practically pressing. While discussions of eugenics used to focus on whether it is unethical to control a child's genetic future by preventing disability, Stramondo takes up the increasingly visible question of when and whether eugenic steps to create a disabled child—for instance, to select an embryo with Achondroplasia or genetic deafness—can be morally permissible.

Stramondo rejects three types of extreme views: the pro-eugenics view that there is a parental duty to design the 'best child possible' with available technologies; the anti-eugenics view that any form of genetic manipulation of a child—perhaps especially any form designed to produce disability—is impermissible; and the libertarian view that parents should have autonomous decision-making power over how and whether to use eugenic technologies. Instead, beginning from a 'broadly pluralist conception of the good life,' Stramondo defends the moderate view that it is permissible for caring parents with a rich understanding of the context in which they would be raising a disabled child, and who will bring that child into a situation in which accommodations will be available to enable the child to have a flourishing life, to create a disabled child by design. While supporting the idea that parents ought to try to give their children a good range of life opportunities, he rejects Norman Daniels's influential [End Page vii] argument that we should understand 'normal opportunity range' in terms of species typical functioning. Instead, in Stramondo's nuanced account, opportunities are always indexed to material and social context. Blanket statements about the relationship between disabilities and opportunities will thus always be distorted and oversimplified. This paper refuses clean solutions, and challenges our intuitions about what it means to care properly for the well-being of our future children.

Tom Walker's "The Obligation to Provide Information where Valid Consent is Not Needed" explores a philosophically and ethically important distinction that almost universally gets elided in bioethics: between the value of giving patients information per se, and the instrumental value of giving them information so that they can autonomously consent to treatment or research participation. Almost all of the bioethical discussions of informing are framed within analyses of informed consent. Walker isolates the ethical contours of informing by considering cases where the patient is not consenting to anything—for instance, when a doctor writes a prescription for a drug for the patient to take at home on their own. This decouples questions about doctors' informational duties from questions about how to enable informed consent, with which they overlap but from which they are distinct. Walker considers questions such as how information contributes to patient benefit (as opposed to autonomy) and whether and when doctors have a duty to warn patients of possible risks. Walker's paper bridges ethical and epistemological concerns and carves out an issue that ought to be the topic of multiple bioethical explorations.

Michael Nair-Collins argues that there is no clear moral line between brain-dead patients and patients with severe dementia; both can be harmed and wronged, even though neither has current investment interests. If this is right, he claims, then harvesting organs from the brain dead is permissible under roughly the same conditions in which harvesting organs from patients with dementia is permissible, if it is at all. He points out that brain dead patients can do all sorts of complex things, such as gestate a child or heal a wound. The fact that they have...

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