Diversity & Ethics in Biological Sciences - Valparaiso

Bioethics: What Everyone Needs to Know by Bonnie Steinbock; Paul T. Menzel The questions and dilemmas of bioethics touch everyone. Should people who refuse to be vaccinated be treated for COVID-19, even if that displaces vaccinated patients with other serious conditions? What restrictions on abortion should there be, if any? Should women be paid to donate eggs?Bioethics: What Everyone Needs to Know RG discusses these and other similar questions facing the public today--as well as providing a way for thinking deeply about them.Steinbock and Menzel first examine major moral theories and how they can be used to analyze bioethical issues. They then provide historical background to the birth of bioethics and explain how it shifted from a paternalistic doctor knows best approach to respect for autonomy, a fundamental value incontemporary bioethics. Subsequent chapters cover advance directives, experimentation on human subjects, the definition of death, physician-assisted dying, abortion, disability, just healthcare systems, the allocation of scarce resources, pharmaceutical drug pricing, assisted reproductivetechnology, egg donation, surrogate motherhood, sex selection, and the genetic modification of humans. Race and gender are considered throughout, as are the ethical issues raised by pandemics. Steinbock and Menzel consider the controversial questions that surface in the public sphere, explaining thefacts, and then evaluating different approaches to resolving them.

Sitting Pretty The view from my ordinary resilient disabled body by Rebekah Taussig A memoir-in-essays from disability advocate and creator of the Instagram account @sitting_pretty Rebekah Taussig, processing a lifetime of memories to paint a beautiful, nuanced portrait of a body that looks and moves differently than most. Growing up as a paralyzed girl during the 90s and early 2000s, Rebekah Taussig only saw disability depicted as something monstrous (The Hunchback of Notre Dame), inspirational (Helen Keller), or angelic (Forrest Gump). None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling. Writing about the rhythms and textures of what it means to live in a body that doesn't fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life. Disability affects all of us, directly or indirectly, at one point or another. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. Sitting Pretty challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story.

What it means to be human : the case for the body in public bioethics by O. Carter Snead One of the Wall Street Journal's Top Ten Books of the Year A leading expert on public bioethics advocates for a new conception of human identity in American law and policy. The natural limits of the human body make us vulnerable and therefore dependent, throughout our lives, on others. Yet American law and policy disregard these stubborn facts, with statutes and judicial decisions that presume people to be autonomous, defined by their capacity to choose. As legal scholar O. Carter Snead points out, this individualistic ideology captures important truths about human freedom, but it also means that we have no obligations to each other unless we actively, voluntarily embrace them. Under such circumstances, the neediest must rely on charitable care. When it is not forthcoming, law and policy cannot adequately respond. What It Means to Be Human makes the case for a new paradigm, one that better represents the gifts and challenges of being human. Inspired by the insights of Alasdair MacIntyre and Charles Taylor, Snead proposes a vision of human identity and flourishing that supports those who are profoundly vulnerable and dependent-children, the disabled, and the elderly. To show how such a vision would affect law and policy, he addresses three complex issues in bioethics: abortion, assisted reproductive technology, and end-of-life decisions. Avoiding typical dichotomies of conservative-versus-liberal and secular-versus-religious, Snead recasts debates over these issues and situates them within his framework of embodiment and dependence. He concludes that, if the law is built on premises that reflect the fully lived reality of life, it will provide support for the vulnerable, including the unborn, mothers, families, and those nearing the end of their lives. In this way, he argues, policy can ensure that people have the care they need in order to thrive. In this provocative and consequential book, Snead rethinks how the law represents human experiences so that it might govern more wisely, justly, and humanely.

Health Care Law and Ethics in a Nutshell by Mark Hall; David Orentlicher Public policy responses to escalating medical costs and constrained access pose fundamental challenges to health care law. Profound medical advances also generate many ethical dilemmas. This authoritative discussion considers how law and ethics respond to these driving social, economic, and political forces of innovation, crisis and reform. Topics include health insurance reform, health care finance and delivery structures, treatment relationships, facility and insurance regulation, corporate and tax law, refusal of life support, organ donation, and reproductive technologies.

Being Heumann : an unrepentant memoir of a disability rights activist by Judith Heumann; Kristen Joiner A Publishers Weekly Best Book of the Year for Nonfiction "...an essential and engaging look at recent disability history."-- Buzzfeed One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job, and just be human. A story of fighting to belong in a world that wasn't built for all of us and of one woman's activism--from the streets of Brooklyn and San Francisco to inside the halls of Washington--Being Heumann recounts Judy Heumann's lifelong battle to achieve respect, acceptance, and inclusion in society. Paralyzed from polio at eighteen months, Judy's struggle for equality began early in life. From fighting to attend grade school after being described as a "fire hazard" to later winning a lawsuit against the New York City school system for denying her a teacher's license because of her paralysis, Judy's actions set a precedent that fundamentally improved rights for disabled people. As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples' rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act. Candid, intimate, and irreverent, Judy Heumann's memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.

The five : the untold lives of the women killed by Jack the Ripper by Hallie Rubenhold Winner of the Baillie Gifford Prize for Nonfiction and of the Goodreads Choice Award for History & Biography The award-winning, best-selling book that changes the narrative of the "Ripper" murders forever Polly, Annie, Elisabeth, Catherine, and Mary Jane are famous for the same thing, though they never met. They came from some of London's wealthiest and poorest neighborhoods, from the factory towns of middle England, and from Wales and Sweden. They wrote ballads, ran coffeehouses, lived on country estates; they breathed ink dust from printing presses and escaped human traffickers. What they had in common was the year of their murders: 1888. The person responsible was never identified, but the character created by the press to fill that gap has become far more famous than any of these five women. Now, in this gripping narrative of five lives, Hallie Rubenhold finally sets the record straight and gives these women back their stories.

: racism, pregnancy, and premature birth by Dána-Ain Davis Winner, 2020 Senior Book Prize, given by the Association of Feminist Anthropology Winner, 2020 Eileen Basker Memorial Prize, given by the Society for Medical Anthropology Honorable Mention, 2020 Victor Turner Prize in Ethnographic Writing, given by the Society for Humanistic Anthropology Finalist, 2020 PROSE Award in the Sociology, Anthropology and Criminology category, given by the Association of American Publishers A troubling study of the role that medical racism plays in the lives of black women who have given birth to premature and low birth weight infants Black women have higher rates of premature birth than other women in America. This cannot be simply explained by economic factors, with poorer women lacking resources or access to care. Even professional, middle-class black women are at a much higher risk of premature birth than low-income white women in the United States. Dána-Ain Davis looks into this phenomenon, placing racial differences in birth outcomes into a historical context, revealing that ideas about reproduction and race today have been influenced by the legacy of ideas which developed during the era of slavery. While poor and low-income black women are often the "mascots" of premature birth outcomes, this book focuses on professional black women, who are just as likely to give birth prematurely. Drawing on an impressive array of interviews with nearly fifty mothers, fathers, neonatologists, nurses, midwives, and reproductive justice advocates, Dána-Ain Davis argues that events leading up to an infant's arrival in a neonatal intensive care unit (NICU), and the parents' experiences while they are in the NICU, reveal subtle but pernicious forms of racism that confound the perceived class dynamics that are frequently understood to be a central factor of premature birth. The book argues not only that medical racism persists and must be considered when examining adverse outcomes--as well as upsetting experiences for parents--but also that NICUs and life-saving technologies should not be the only strategies for improving the outcomes for black pregnant women and their babies. Davis makes the case for other avenues, such as community-based birthing projects, doulas, and midwives, that support women during pregnancy and labor are just as important and effective in avoiding premature births and mortality.

Bad Blood : secrets and lies in a Silicon Valley startup by John Carreyrou The full inside story of the breathtaking rise and shocking collapse of Theranos, the multi billion-dollar biotech startup, by the prize-winning journalist who first broke the story and pursued it to the end, despite pressure from its charismatic CEO and threats by her lawyers. In 2014, Theranos founder and CEO Elizabeth Holmes was widely seen as the female Steve Jobs: a brilliant Stanford dropout whose startup "unicorn" promised to revolutionize the medical industry with a machine that would make blood testing significantly faster and easier. There was just one problem: The technology didn't work. A riveting story of the biggest corporate fraud since Enron, a tale of ambition and hubris set amid the bold promises of Silicon Valley.

Just medicine : a cure for racial inequality in American health care by Dayna Bowen Matthew Offers an innovative plan to eliminate inequalities in American health care and save the lives they endanger Over 84,000 black and brown lives are needlessly lost each year due to health disparities: the unfair, unjust, and avoidable differences between the quality and quantity of health care provided to Americans who are members of racial and ethnic minorities and care provided to whites. Health disparities have remained stubbornly entrenched in the American health care system--and in Just Medicine Dayna Bowen Matthew finds that they principally arise from unconscious racial and ethnic biases held by physicians, institutional providers, and their patients. Implicit bias is the single most important determinant of health and health care disparities. Because we have missed this fact, the money we spend on training providers to become culturally competent, expanding wellness education programs and community health centers, and even expanding access to health insurance will have only a modest effect on reducing health disparities. We will continue to utterly fail in the effort to eradicate health disparities unless we enact strong, evidence-based legal remedies that accurately address implicit and unintentional forms of discrimination, to replace the weak, tepid, and largely irrelevant legal remedies currently available. Our continued failure to fashion an effective response that purges the effects of implicit bias from American health care, Matthew argues, is unjust and morally untenable. In this book, she unites medical, neuroscience, psychology, and sociology research on implicit bias and health disparities with her own expertise in civil rights and constitutional law. In a time when the health of the entire nation is at risk, it is essential to confront the issues keeping the health care system from providing equal treatment to all.

The Immortal Life of Henrietta Lacks by Rebecca Skloot A New York Times Bestseller -- Henrietta Lacks, a poor Southern tobacco farmer, was buried in an unmarked grave sixty years ago. Yet her cells -- taken without her knowledge, grown in culture and bought and sold by the billions -- became one of the most important tools in medical research. Rebecca Skloot takes us on an extraordinary journey from the "colored" ward of Johns Hopkins Hospital in the 1950s to East Baltimore today, where Henrietta's family struggles with her legacy.