Research Ethics Reading List: Fall 2019

In Research Ethics Reading List posts we feature  books in or adjacent to the field of research ethics that we think you’ll find interesting, motivating, inspiring, challenging, or some combination of the four! Books featured are a combination of new releases, classics in the field, or underexposed gems we think are worth a look. (Book description copy comes courtesy of each book’s publisher or author website where possible). 

The authors of two of the books on this reading list will be speaking at the 2019 Advancing Ethical Research Conference (AER19), so you may want to read their books before you attend.

A Series of Catastrophes and Miracles cover A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer
Mary Elizabeth Williams (AER19 Keynote Speaker)

“A wry, witty account of what it is like to face death—and be restored to life. After being diagnosed in her early 40s with metastatic melanoma—a ‘rapidly fatal’ form of cancer—journalist and mother of two Mary Elizabeth Williams finds herself in a race against the clock. She takes a once-in-a-lifetime chance and joins a clinical trial for immunotherapy, a revolutionary drug regimen that trains the body to vanquish malignant cells. Astonishingly, her cancer disappears entirely in just a few weeks. But at the same time, her best friend embarks on a cancer journey of her own—with very different results. Williams’s experiences as a patient and a medical test subject reveal with stark honesty what it takes to weather disease, the extraordinary new developments that are rewriting the rules of science—and the healing power of human connection.”

Perils of Partnership coverThe Perils of Partnership: Industry Influence, Institutional Integrity, and Public Health
Jonathan H. Marks (AER19 Meet the Author Luncheon and Book Signing)

“Collaboration with industry has become the paradigm in public health. Governments commonly develop close relationships with companies that are creating or exacerbating the very problems public health agencies are trying to solve. Nowhere is this more evident than in partnerships with food and soda companies to address obesity and diet-related noncommunicable diseases. The author argues that public-private partnerships and multistakeholder initiatives create webs of influence that undermine the integrity of public health agencies; distort public health research and policy; and reinforce the framing of public health problems and their solutions in ways that are least threatening to the commercial interests of corporate ‘partners.’ We should expect multinational corporations to develop strategies of influence. But public bodies need to develop counter-strategies to insulate themselves from corporate influence in all its forms.”

Are We Smart Enough to Know How Smart Animals Are?  coverAre We Smart Enough to Know How Smart Animals Are?
Frans de Waal

“Hailed as a classic, Are We Smart Enough to Know How Smart Animals Are? explores the oddities and complexities of animal cognition—in crows, dolphins, parrots, sheep, wasps, bats, chimpanzees, and bonobos—to reveal how smart animals really are, and how we’ve underestimated their abilities for too long. Did you know that octopuses use coconut shells as tools, that elephants classify humans by gender and language, and that there is a young male chimpanzee at Kyoto University whose flash memory puts that of humans to shame? Fascinating, entertaining, and deeply informed, de Waal’s landmark work will convince you to rethink everything you thought you knew about animal—and human—intelligence.”

Invisible Women: Data Bias in a World Designed for Men coverInvisible Women: Data Bias in a World Designed for Men
Caroline Criado Perez

“Data is fundamental to the modern world. From economic development, to healthcare, to education and public policy, we rely on numbers to allocate resources and make crucial decisions. But because so much data fails to take into account gender, because it treats men as the default and women as atypical, bias and discrimination are baked into our systems. And women pay tremendous costs for this bias, in time, money, and often with their lives. Celebrated feminist advocate Caroline Criado Perez investigates the shocking root cause of gender inequality and research in Invisible Women​, diving into women’s lives at home, the workplace, the public square, the doctor’s office, and more. Built on hundreds of studies in the US, the UK, and around the world, and written with energy, wit, and sparkling intelligence, this is a groundbreaking, unforgettable exposé that will change the way you look at the world.”

Private Bodies, Public Texts: Race, Gender, and a Cultural Bioethics coverPrivate Bodies, Public Texts: Race, Gender, and a Cultural Bioethics
Karla FC Holloway

“In Private Bodies, Public Texts, Karla FC Holloway examines instances where medical issues and information that would usually be seen as intimate, private matters are forced into the public sphere. As she demonstrates, the resulting social dramas often play out on the bodies of women and African Americans. Holloway discusses the spectacle of the Terri Schiavo right-to-die case and the injustice of medical researchers’ use of Henrietta Lacks’s cell line without her or her family’s knowledge or permission. She offers a provocative reading of the Tuskegee syphilis study and a haunting account of the ethical dilemmas that confronted physicians, patients, and families when a hospital became a space for dying rather than healing during Hurricane Katrina; even at that dire moment, race mattered. Private Bodies, Public Texts is a compelling call for a cultural bioethics that attends to the historical and social factors that render some populations more vulnerable than others in medical and legal contexts. Holloway proposes literature as a conceptual anchor for discussions of race, gender, bioethics, and the right to privacy. Literary narratives can accommodate thick description, multiple subjectivities, contradiction, and complexity.”

The Age of Living Machines coverThe Age of Living Machines: How Biology Will Build the Next Technology Revolution
Susan Hockfield

“From the former president of MIT, the story of the next technology revolution, and how it will change our lives. A century ago, discoveries in physics came together with engineering to produce an array of astonishing new technologies: radios, telephones, televisions, aircraft, radar, nuclear power, computers, the Internet, and a host of still-evolving digital tools. These technologies so radically reshaped our world that we can no longer conceive of life without them. Today, the world’s population is projected to rise to well over 9.5 billion by 2050, and we are currently faced with the consequences of producing the energy that fuels, heats, and cools us. With temperatures and sea levels rising, and large portions of the globe plagued with drought, famine, and drug-resistant diseases, we need new technologies to tackle these problems. But we are on the cusp of a new convergence, argues world-renowned neuroscientist Susan Hockfield, with discoveries in biology coming together with engineering to produce another array of almost inconceivable technologies—next-generation products that have the potential to be every bit as paradigm shifting as the twentieth century’s digital wonders.”

Are there books related to research ethics that you enjoyed? Tell us about them in the comments!