"Beyond Bioethics is a timely and important book that offers insightful and innovative ways to think about equality and representation in the field, while highlighting the attendant ethical obligations of scientists, clinicians, researchers, and scholars. This is essential reading!"—Kimani Paul-Emile, Associate Professor of Law and Associate Director, Center on Race, Law, and Justice, Fordham University School of Law

"Vividly capturing the technical and existential dimensions of the new biopolitics, this brilliantly edited volume is essential reading in the classroom, the boardroom, and even the courtroom. The editors pull together carefully curated historical, legal, scientific, and feminist scholarship to craft a cogent critique of the 'thin vision' of contemporary bioethics. They call for a new biopolitics that frames ethical questions in terms of social and political forces, values, and time. Collected essays illuminate with particular force how medical genetics, ancestry testing, genomics, and other enterprises oriented around DNA keep alive destructive ideas about biological race and positive eugenics. The book is a first effort to construct a coherent progressive vision for a new kind of bioethics, and it is a compelling contribution to debates that grow more important every week."—M. Susan Lindee, Janice and Julian Bers Professor of History and Sociology of Science, University of Pennsylvania

"This book is a wonderful resource of diverse, insightful essays. It is particularly timely in the age of CRISPR and expanding direct-to-consumer genetic technologies as they intersect with assisted reproduction."—Paul S. Knoepfler, Professor of Cell Biology and Human Anatomy, University of California, Davis, School of Medicine

"Beyond Bioethics canvasses critical milestones in law, society, and biotechnology to share nuanced insights about class, politics, property, race, and ethics in how the human body is constructed, commodified, and theorized. It should be on the shelves of every scholar engaging in biotechnology, bioethics, and the law."—Michele Goodwin, Chancellor’s Professor of Law, University of California, Irvine and author of Black Markets: The Supply and Demand of Body Parts

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.

Beyond Bioethics

Toward a New Biopolitics

By Osagie K. Obasogie, Marcy Darnovsky

UNIVERSITY OF CALIFORNIA PRESS

Copyright © 2018 The Regents of the University of California
All rights reserved.
ISBN: 978-0-520-27784-7

Contents

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 Laws 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 III. 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, Die 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 Questions of an Altogether Different Kind": Progressive Politics in the Biotech Age Marcy Darnovsky,
Afterword by Patricia J. Williams,
List of Contributors,
Index,

CHAPTER 1

The Biological Inferiority of the Undeserving Poor

Michael B. Katz

... If the misery of our poor be caused not by the laws of nature, but by our institutions, great is our sin. ...

CHARLES DARWIN (1839)

For most of recorded history, poverty reflected God's will. The poor were always with us. They were not inherently immoral, dangerous, or different. They were not to be shunned, feared, or avoided. In the late eighteenth and early nineteenth centuries, a harsh new idea of poverty and poor people as different and inferior began to replace this ancient biblical view. In what ways, exactly, are poor people different from the rest of us became — and remains — a burning question answered with moral philosophy, political economy, social science, and, eventually, biology. Why did biological conceptions of poverty wax and wane over the last century and a half? What forms have they taken? What have been their consequences?

The biological definition of poverty reinforces the idea of the undeserving poor, which is the oldest theme in post-Enlightenment poverty discourse. Its history stretches from the late eighteenth century through to the present. Poverty, in this view, results from personal failure and inferiority. Moral weaknesses — drunkenness, laziness, sexual promiscuity — constitute the most consistent markers of the undeserving poor. The idea that a culture of poverty works its insidious influence on individuals, endowing them with traits that trap them in lives of destitution, entered both scholarly and popular discourse somewhat later and endures to this day. Faulty heredity composes the third strand in the identification of the undeserving poor; backed by scientific advances in molecular biology and neuroscience, it is enjoying a revival. The historical record shows this idea in the past to have been scientifically dubious, ethically suspect, politically harmful, and, at its worst, lethal. That is why we should pay close attention to its current resurgence.

This article excavates the definition of poor people as biologically inferior. It not only documents its persistence over time but emphasizes three themes. First, the concept rises and falls in prominence in response to institutional and programmatic failure. It offers a convenient explanation for why the optimism of reformers proved illusory or why social problems remained...