Disability, Health, Law, and Bioethics

I. Glenn Cohen is Professor of Law at Harvard Law School and the Faculty Director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics. He is one of the world's leading experts on the intersection of bioethics and the law, as well as health law. Glenn has written over 100 articles in venues such as the New England Journal of Medicine, the Journal of the American Medical Association, Nature, and the Harvard Law Review. Cohen is also the author, editor, or co-editor of twelve books. Carmel Shachar is the Executive Director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Carmel's scholarship focuses on law and health policy, with a focus on the regulation of value-based health care, the impact of the opioid epidemic, and anti-discrimination law and policy. She is also a lecturer on law at Harvard Law School, where she co-teaches a course on Health Care Rights in the Twenty-First Century. Anita Silvers, Professor of Philosophy and Health Equity Institute Affiliate, taught at San Francisco State University for over fifty years. During that time, she was a leader in the fight against barriers keeping students with disabilities out of California higher education system. Along with publishing more than 150 book chapters and articles, Anita received an appointment to the National Endowment for the Humanities National Council and made significant contributions to the field of philosophy and disability. Michael Ashley Stein is the Executive Director of the Harvard Law School Project on Disability, and a Visiting Professor at Harvard Law School since 2005. One of the world's leading experts on disability law and policy, he participated in the drafting of the United Nations Convention on the Rights of Persons with Disabilities; works globally with disabled peoples' organizations; consults with governments; advises United Nations bodies and national human rights institutions; and has brought landmark disability rights litigation. His path-breaking scholarship has been published by leading journals and academic presses.

• Introduction Carmel Shachar, I. Glenn Cohen and Michael Ashley Stein; Preface Tom Shakespeare; Part I. Disability: Definitions and Theories: Introduction I. Glenn Cohen; 1. Disability, health, and normal function Elizabeth Barnes; 2. Healthcare as eugenics Ani B. Satz; 3. Epistemic injustice, disability stigma, and public health law Daniel Goldberg; Part II. Disability in the Beginning and the End of Life: Introduction I. Glenn Cohen; 4. Abortion, the disabilities of pregnancy, and the dignity of risk Mary Anne Case; 5. The Down Syndrome Information Act and 'mere difference': redefining the scope of prenatal testing conversations? Marie-Eve Lemoine and Vardit Ravitsky; 6. Dementia, disability, and advance directives: defensible legal standards for dementia care Rebecca Dresser; Part III. Disability in the Clinical Setting: Introduction Carmel Shachar; 7. Expressing respect for people with disabilities in medical practice Adam Cureton; 8. Disabled bodies and good organs Emily Largent; 9. Humanizing clinical care for patients with disabilities Omar Sultan Haque and Michael Ashley Stein; 10. Chronic pain as a challenge for disability theory and policy Caroline J. Huang and David Wasserman; Part IV. Equality, Expertise, and Access: Introduction Michael Ashley Stein; 11. Making 'meaningful access' meaningful: equitable healthcare for divisive times Leslie Francis and Anita Silvers; 12. The privacy problem in disability antidiscrimination law Jasmine E. Harris; 13. Sexual agency as a rights-based imperative for persons with intellectual disabilities Matthew S. Smith, Tara Allison and Michael Ashley Stein; Part V. Disability, Intersectionality, and Social Movements: Introduction Carmel Shachar; 14. Destigmatizing disability in the law of immigration admissions Medha D. Makhlouf; 15. The normative bases of medical civil rights Craig Konnoth; 16. Judicial representation: speaking for others from the bench Wendy Salkin; Part VI. Quantifying Disability: Introduction William P. Alford; 17. Can we universally accommodate mental health and should we?: a systematic review of the evidence and ethical analysis Nathaniel Z. Counts, C. Taylor Poor, Julie Erickson, Thomas Hart and Kelly A. Davis; 18. Algorithmic disability discrimination Mason Marks; 19. The pathways approach to priority setting: considering quality of life while being fair to individuals with disabilities Govind Persad; 20. Measuring health-state utility via cured patients Nir Eyal.

'As we confront the implications of wide-ranging biomedical changes, issues of disability and of difference keep reappearing, like sharp rocks in roiling seas. This volume offers an invaluable breadth and depth of insight into those issues, highlighting how complex and varied they are, both in principle and in practice.' Henry T. Greely, Deane F. and Kate Edelman Johnson Professor of Law, Director, Center for Law and the Biosciences, Stanford University