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Patents, HIV/AIDS, and Race

In The Genealogy of a Gene, Myles Jackson uses the story of the CCR5 gene to investigate the interrelationships among science, technology, and society. Mapping the varied “genealogy” of CCR5—intellectual property, natural selection, Big and Small Pharma, human diversity studies, personalized medicine, ancestry studies, and race and genomics—Jackson links a myriad of diverse topics. The history of CCR5 from the 1990s to the present offers a vivid illustration of how intellectual property law has changed the conduct and content of scientific knowledge, and the social, political, and ethical implications of such a transformation.

The CCR5 gene began as a small sequence of DNA, became a patented product of a corporation, and then, when it was found to be an AIDS virus co-receptor with a key role in the immune system, it became part of the biomedical research world—and a potential moneymaker for the pharmaceutical industry. When it was further discovered that a mutation of the gene found in certain populations conferred near-immunity to the AIDS virus, questions about race and genetics arose. Jackson describes these developments in the context of larger issues, including the rise of “biocapitalism,” the patentability of products of nature, the difference between U.S. and European patenting approaches, and the relevance of race and ethnicity to medical research.

When Bioethics Stole Medicine

Bioethics emerged in the 1960s from a conviction that physicians and researchers needed the guidance of philosophers in handling the issues raised by technological advances in medicine. It blossomed as a response to the perceived doctor-knows-best paternalism of the traditional medical ethic and today plays a critical role in health policies and treatment decisions. Bioethics claimed to offer a set of generally applicable, universally accepted guidelines that would simplify complex situations. In Thieves of Virtue, Tom Koch contends that bioethics has failed to deliver on its promises. Instead, he argues, bioethics has promoted a view of medicine as a commodity whose delivery is predicated not on care but on economic efficiency.

At the heart of bioethics, Koch writes, is a “lifeboat ethic” that assumes “scarcity” of medical resources is a natural condition rather than the result of prior economic, political, and social choices. The idea of natural scarcity requiring ethical triage signaled a shift in ethical emphasis from patient care and the physician’s responsibility for it to neoliberal accountancies and the promotion of research as the preeminent good.

The solution to the failure of bioethics is not a new set of simplistic principles. Koch points the way to a transformed medical ethics that is humanist, responsible, and defensible.

Perspectives on the Future

The current framework for the regulation of human subjects research emerged largely in reaction to the horrors of Nazi human experimentation, revealed at the Nuremburg trials, and the Tuskegee syphilis study, conducted by U.S. government researchers from 1932 to 1972. This framework, combining elements of paternalism with efforts to preserve individual autonomy, has remained fundamentally unchanged for decades. Yet, as this book documents, it has significant flaws—including its potential to burden important research, overprotect some subjects and inadequately protect others, generate inconsistent results, and lag behind developments in how research is conducted. Invigorated by the U.S. government’s first steps toward change in over twenty years, Human Subjects Research Regulation brings together the leading thinkers in this field from ethics, law, medicine, and public policy to discuss how to make the system better. The result is a collection of novel ideas—some incremental, some radical—for the future of research oversight and human subject protection.

After reviewing the history of U.S. research regulations, the contributors consider such topics as risk-based regulation; research involving vulnerable populations (including military personnel, children, and prisoners); the relationships among subjects, investigators, sponsors, and institutional review boards; privacy, especially regarding biospecimens and tissue banking; and the possibility of fundamental paradigm shifts.

Adam Braddock, Alexander Morgan Capron, Ellen Wright Clayton, I. Glenn Cohen, Susan Cox, Amy L. Davis, Hilary Eckert, Barbara J. Evans, Nir Eyal, Heidi Li Feldman, Benjamin Fombonne, Elisa A. Hurley, Ana S. Iltis, Gail H. Javitt, Greg Koski, Nicole Lockhart, Holly Fernandez Lynch, Michael McDonald, Michelle N. Meyer, Osagie K. Obasogie, Efthimios Parasidis, Govind Persad, Rosamond Rhodes, Suzanne M. Rivera, Zachary M. Schrag, Seema K. Shah, Jeffrey Skopek, Laura Stark, Patrick Taylor, Anne Townsend, Carol Weil, Brett A. Williams, Leslie E. Wolf

Setting Limits on Healthcare

Most people would agree that the healthcare system in the United States is a mess. Healthcare accounts for a larger percentage of gross domestic product in the United States than in any other industrialized nation, but health outcomes do not reflect this enormous investment. In this book, Philip Rosoff offers a provocative proposal for providing quality healthcare to all Americans and controlling the out-of-control costs that threaten the economy. He argues that rationing—often associated in the public’s mind with such negatives as unplugging ventilators, death panels, and socialized medicine—is not a dirty word. A comprehensive, centralized, and fair system of rationing is the best way to distribute the benefits of modern medicine equitably while achieving significant cost savings.

Rosoff points out that certain forms of rationing already exist when resources are scarce and demand high: the organ transplant system, for example, and the distribution of drugs during a shortage. He argues that if we incorporate certain key features from these systems, healthcare rationing would be fair—and acceptable politically. Rosoff considers such topics as fairness, decisions about which benefits should be subject to rationing, and whether to compensate those who are denied scarce resources. Finally, he offers a detailed discussion of what an effective and equitable healthcare rationing system would look like.

The Struggle to Understand the Interaction of Nature and Nurture

If everyone now agrees that human traits arise not from nature or nurture but from the interaction of nature and nurture, why does the “nature versus nurture” debate persist? In Beyond Versus, James Tabery argues that the persistence stems from a century-long struggle to understand the interaction of nature and nurture—a struggle to define what the interaction of nature and nurture is, how it should be investigated, and what counts as evidence for it.

Tabery examines past episodes in the nature versus nurture debates, offers a contemporary philosophical perspective on them, and considers the future of research on the interaction of nature and nurture. From the eugenics controversy of the 1930s and the race and IQ controversy of the 1970s to the twenty-first-century debate over the causes of depression, Tabery argues, the polarization in these discussions can be attributed to what he calls an “explanatory divide”—a disagreement over how explanation works in science, which in turn has created two very different concepts of interaction. Drawing on recent developments in the philosophy of science, Tabery offers a way to bridge this explanatory divide and these different concepts integratively. Looking to the future, Tabery evaluates the ethical issues that surround genetic testing for genes implicated in interactions of nature and nurture, pointing to what the future does (and does not) hold for a science that continues to make headlines and raise controversy.

Gender and the Making of French Citizenship

In May 2013, after months of controversy, France legalized same-sex marriage and adoption by homosexual couples. Obstacles to adoption and parenting equality remain, however—many of them in the form of cultural and political norms reflected and expressed in French adoption policies. In The Politics of Adoption, Bruno Perreau describes the evolution of these policies. In the past thirty years, Perreau explains, political and intellectual life in France have been dominated by debates over how to preserve “Frenchness,” and these debates have driven policy making. Adoption policies, he argues, link adoption to citizenship, reflecting and enforcing the postcolonial state’s notions of parenthood, gender, and Frenchness.

After reviewing the complex history of adoption, Perreau examines French political debates over adoption, noting, among other things, that intercountry adoptions stirred far less controversy than the difference between the sexes in an adopting couple. He also discusses judicial action on adoption; child welfare agencies as gatekeepers to parenthood (as defined by experts); the approval process from the viewpoints of social workers and applicants; and adoption’s link to citizenship, and its use as a metaphor for belonging.

Adopting a Foucaultian perspective, Perreau calls the biopolitics of adoption “pastoral”: it manages the individual for the good of the collective “flock”; it considers itself outside politics; and it considers not so much the real behavior of individuals as an allegorical representation of them. His argument sheds new light on American debates on bioethics, identity, and citizenship.

The New Language of Global Bioethics and Biolaw

“Human dignity” has been enshrined in international agreements and national constitutions as a fundamental human right. The World Medical Association calls on physicians to respect human dignity and to discharge their duties with dignity. And yet human dignity is a term--like love, hope, and justice--that is intuitively grasped but never clearly defined. Some ethicists and bioethicists dismiss it; other thinkers point to its use in the service of particular ideologies. In this book, Michael Barilan offers an urgently needed, nonideological, and thorough conceptual clarification of human dignity and human rights, relating these ideas to current issues in ethics, law, and bioethics.

Combining social history, history of ideas, moral theology, applied ethics, and political theory, Barilan tells the story of human dignity as a background moral ethos to human rights. After setting the problem in its scholarly context, he offers a hermeneutics of the formative texts on Imago Dei; provides a philosophical explication of the value of human dignity and of vulnerability; presents a comprehensive theory of human rights from a natural, humanist perspective; explores issues of moral status; and examines the value of responsibility as a link between virtue ethics and human dignity and rights.

Barilan accompanies his theoretical claim with numerous practical illustrations, linking his theory to such issues in bioethics as end-of-life care, cloning, abortion, torture, treatment of the mentally incapacitated, the right to health care, the human organ market, disability and notions of difference, and privacy, highlighting many relevant legal aspects in constitutional and humanitarian law.

The Ethical Choreography of Stem Cell Research

After a decade and a half, human pluripotent stem cell research has been normalized. There may be no consensus on the status of the embryo—only a tacit agreement to disagree—but the debate now takes place in a context in which human stem cell research and related technologies already exist. In this book, Charis Thompson investigates the evolution of the controversy over human pluripotent stem cell research in the United States and proposes a new ethical approach for “good science.” Thompson traces political, ethical, and scientific developments that came together in what she characterizes as a “procurial” framing of innovation, based on concern with procurement of pluripotent cells and cell lines, a pro-cures mandate, and a proliferation of bio-curatorial practices.

Thompson describes what she calls the “ethical choreography” that allowed research to go on as the controversy continued. The intense ethical attention led to some important discoveries as scientists attempted to “invent around” ethical roadblocks. Some ethical concerns were highly legible; but others were hard to raise in the dominant procurial framing that allowed government funding for the practice of stem cell research to proceed despite controversy. Thompson broadens the debate to include such related topics as animal and human research subjecthood and altruism. Looking at fifteen years of stem cell debate and discoveries, Thompson argues that good science and good ethics are mutually reinforcing, rather than antithetical, in contemporary biomedicine.

A Philosophical Defense of Limits

The transformative potential of genetic and cybernetic technologies to enhance human capabilities is most often either rejected on moral and prudential grounds or hailed as the future salvation of humanity. In this book, Nicholas Agar offers a more nuanced view, making a case for moderate human enhancement—improvements to attributes and abilities that do not significantly exceed what is currently possible for human beings. He argues against radical human enhancement, or improvements that greatly exceed current human capabilities.

Agar explores notions of transformative change and motives for human enhancement; distinguishes between the instrumental and intrinsic value of enhancements; argues that too much enhancement undermines human identity; considers the possibility of cognitively enhanced scientists; and argues against radical life extension. Making the case for moderate enhancement, Agar argues that many objections to enhancement are better understood as directed at the degree of enhancement rather than enhancement itself. Moderate human enhancement meets the requirement of truly human enhancement. By radically enhancing human cognitive capabilities, by contrast, we may inadvertently create beings (“post-persons”) with moral status higher than that of persons. If we create beings more entitled to benefits and protections against harms than persons, Agar writes, this will be bad news for the unenhanced. Moderate human enhancement offers a more appealing vision of the future and of our relationship to technology.

Genetic Choice and the Challenge for Liberal Democracies

Emerging biotechnologies that manipulate human genetic material have drawn a chorus of objections from politicians, pundits, and scholars. In Humanity Enhanced, Russell Blackford eschews the heated rhetoric that surrounds genetic enhancement technologies to examine them in the context of liberal thought, discussing the public policy issues they raise from legal and political perspectives. Some see the possibility of genetic choice as challenging the values of liberal democracy. Blackford argues that the challenge is not, as commonly supposed, the urgent need for a strict regulatory action. Rather, the challenge is that fear of these technologies has created an atmosphere in which liberal tolerance itself is threatened.

Focusing on reproductive cloning, pre-implantation genetic diagnosis of embryos, and genetic engineering, Blackford takes on objections to enhancement technologies (raised by Jürgen Habermas and others) based on such concerns as individual autonomy and distributive justice. He argues that some enhancements would be genuinely beneficial, and that it would be justified in some circumstances even to exert pressure on parents to undertake genetic modification of embryos. Blackford argues against draconian suppression of human enhancement, although he acknowledges that some specific and limited regulation may be required in the future. More generally, he argues, liberal democracies would demonstrate liberal values by tolerating and accepting the emerging technologies of genetic choice.

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