Beyond Bioethics

For decades, the field of bioethics has shaped the way we think about ethical problems in science, technology, and medicine. But its traditional emphasis on individual interests such as doctor-patient relationships, informed consent, and personal autonomy is minimally helpful in confronting the social and political challenges posed by new human biotechnologies such as assisted reproduction, human genetic modification, and DNA forensics. Beyond Bioethics addresses these provocative issues from an emerging standpoint that is attentive to race, gender, class, disability, privacy, and notions of democracy—a "new biopolitics."

This authoritative volume provides an overview for those grappling with the profound dilemmas posed by these developments. It brings together the work of cutting-edge thinkers from diverse fields of study and public engagement, all of them committed to this new perspective grounded in social justice and public interest values.

Osagie K. Obasogie is Haas Distinguished Chair and Professor of Bioethics in the Joint Medical Program and School of Public Health at the University of California, Berkeley. 

Marcy Darnovsky is Executive Director of the Center for Genetics and Society, a public interest organization focused on human biotechnologies.

List of Illustrations
Foreword by Troy Duster
Acknowledgments
Note to Readers

Introduction - Osagie K. Obasogie and Marcy Darnovsky

Part I. The Biopolitical Critique of Bioethics: Historical Context
1. The Biological Inferiority of the Undeserving Poor - Michael B. Katz
2. Making Better Babies: Public Health and Race Betterment in Indiana, 1920–1935 - Alexandra Minna Stern
3. Eugenics and the Nazis: The California Connection - Edwin Black
4. Why the Nazis Studied American Race Law for Inspiration - James Q. Whitman
5. Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century - Lennard J. Davis
6. The Eugenics Legacy of the Nobelist Who Fathered IVF - Osagie K. Obasogie

Part II. Bioethics and its Discontents
7. A Sociological Account of the Growth of Principlism - John H. Evans 
8. Why a Feminist Approach to Bioethics? - Margaret Olivia Little
9. Disability Rights Approach toward Bioethics? - Gregor Wolbring
10. Differences from Somewhere: The Normativity of Whiteness in Bioethics in the United States - Catherine Myser
11. Bioethical Silence and Black Lives - Derek Ayeh
12. The Ethicists - Carl Elliott

Part II. Emerging Biotechnologies, Extreme Ideologies: The Recent Past and Near Future
13. The Genome as Commons - Tom Athanasiou and Marcy Darnovsky
14. Yuppie Eugenics - Ruth Hubbard and Stuart Newman
15. Brave New Genome - Eric S. Lander
16. Can We Cure Genetic Diseases without Slipping into Eugenics? - Nathaniel Comfort 
17. Cyborg Soothsayers of the High-Tech Hogwash Emporia: In Amsterdam with the Singularity - Corey Pein

Part IV. Markets, Property, and The Body
18. Flacking for Big Pharma - Harriet A. Washington
19. Your Body, Their Property - Osagie K. Obasogie
20. Where Babies Come From: Supply and Demand in an Infant Marketplace - Debora Spar
21. Dear Facebook, Please Don’t Tell Women to Lean In to Egg Freezing - Jessica Cussins
22. The Miracle Woman - Rebecca Skloot

Part V. Patients As Consumers in The Gene Age
23. What Is Your DNA Worth? - David Dobbs
24. Should Patients Understand That They Are Research Subjects? - Jenny Reardon
25. Direct-to-Consumer Genetic Tests Should Come with a Health Warning - Jessica Cussins
26. Genetic Testing for All Women? Not a Solution to the Breast Cancer Epidemic - Karuna Jaggar
27. Welcome, Freshmen: DNA Swabs, Please - Troy Duster
28. Me Medicine - Donna Dickenson
29. Public Health in the Precision-Medicine Era - Ronald Bayer and Sandro Galea

Part VI. Seeking Humanity in Human Subjects Research
30. Medical Exploitation: Inmates Must Not Become Guinea Pigs Again - Allen M. Hornblum and Osagie K. Obasogie
31. The Body Hunters - Marcia Angell
32. Guinea-Pigging - Carl Elliott
33. Human Enhancement and Experimental Research in the Military - Efthimios Parasidis
34. Non-Consenting Adults - Harriet A. Washington

Part VII. Baby-Making in The Biotech Age
35. Generation I.V.F.: Making a Baby in the Lab—10 Things I Wish Someone Had Told Me - Miriam Zoll
36. Queering the Fertility Clinic - Laura  Mamo
37. Reproductive Tourism: Equality Concerns in the Global Market for Fertility Services - Lisa Chiyemi Ikemoto
38. Make Me a Baby as Fast as You Can - Douglas Pet 
39. Let’s Get Rid of the Secrecy in Donor-Conceived Families - Naomi Cahn and Wendy Kramer

Part VIII. Selecting Traits, Selecting Children
40. Disability Equality and Prenatal Testing: Contradictory or Compatible? - Adrienne Asch
41. The Bleak New World of Prenatal Genetics - Marcy Darnovsky and Alexandra Minna Stern
42. Have New Prenatal Tests Been Dangerously Oversold? - Beth Daley
43. Sex Selection and the Abortion Trap - Mara Hvistendahl
44. A Baby, Please: Blond, Freckles—Hold the Colic - Gautam Naik

Part IX. Reinventing Race in The Gene Age
45. Straw Men and Their Followers: The Return of Biological Race - Evelynn M. Hammonds
46. The Problem with Race-Based Medicine - Dorothy Roberts
47. Race in a Bottle - Jonathan Kahn 
48. The Science and Business of Genetic Ancestry Testing - Deborah A. Bolnick et al.
49. All That Glitters Isn’t Gold - Osagie K. Obasogie and Troy Duster
50. High-Tech, High-Risk Forensics - Osagie K. Obasogie

Part X. Biopolitics and The Future
51. Die, Selfish Gene, Diem - David Dobbs
52. Toward Race Impact Assessments - Osagie K. Obasogie
53. Human Genetic Engineering Demands More Than a Moratorium - Sheila Jasanoff, J. Benjamin Hurlbut, and Krishanu Saha
54. “Moral Meanings of an Altogether Different Kind”: Progressive Politics in the Biotech Age - Marcy Darnovsky

Afterword by Patricia J. Williams
List of Contributors
Index