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Beyond Bioethics: Toward a New Biopolitics
Beyond Bioethics: Toward a New Biopolitics
Beyond Bioethics: Toward a New Biopolitics
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Beyond Bioethics: Toward a New Biopolitics

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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.
LanguageEnglish
Release dateMar 9, 2018
ISBN9780520961944
Beyond Bioethics: Toward a New Biopolitics

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    Beyond Bioethics - Osagie K. Obasogie

    Introduction

    Osagie K. Obasogie and Marcy Darnovsky

    We begin with three vignettes.

    The 1997 announcement that researchers in Scotland had produced the first cloned mammal, a sheep named Dolly, gave rise to rampant discussions about the prospects of cloned human beings. Many scientists, bioethicists, and others weighed in to explore how we should respond—morally, politically, socially—to this new possibility. Public opinion surveys found that about 90 percent of respondents opposed the prospect of cloning as a form of human reproduction. But among those who supported it were some reproductive rights advocates, who were reluctant to endorse anything that might be construed as a limit on reproductive freedom.

    In that context, Planned Parenthood Federation of America embarked on a process aimed at adopting an organizational position on human reproductive cloning, part of which involved bringing the issue to a 2001 meeting of board members and senior staff members. To gauge participants’ sentiments, the senior Planned Parenthood staffer charged with facilitating the discussion, herself troubled by some of her colleagues’ hesitation to oppose human reproductive cloning, prepared several hypothetical scenarios and presented them to breakout groups at the meeting. In one of these scenarios, titled Happy Workers: Creation of a Free Market Empire,

    a company [is] making a large profit with sales of a gadget for which consumer demand is inexhaustible. The owners face a challenge, however, because the final step in the manufacture of the gadget must be done manually, and small, dexterous human hands are needed.

    They identify a worker who is particularly skilled at this task, and propose to produce 1,000 clones of her. They approach her with an offer of $1 million now, and another $5 million after the clones are able to perform the job once they reach 16 years of age. The company will assume complete responsibility for rearing and caring for the clones. And since the sole purpose of the clones will be to do the work in the last step of manufacture, they will be engineered to require little sleep and to have few ambitions other than performance of their work.¹

    Each discussion group was asked to decide whether it should be permissible to produce clones for such a purpose. The scenarios’ author later reported that although most participants found the situation disturbing, none of the breakout groups were willing to support legislation that would prohibit human reproductive cloning. All were persuaded by the counterargument that the decision should be a matter of individual choice. Fortunately, Planned Parenthood did not adopt this sentiment as policy.

    *

    In 2006, the Massachusetts Institute of Technology hosted a conference on a new drug called BiDil, which had recently been approved by the US Food and Drug Administration to treat heart failure. As Jonathan Kahn recounts in Race in a Bottle (part 9 of this volume), the FDA’s action had triggered quite an uproar, because BiDil was the first drug ever to be approved for a particular racial group. The agency had given its blessing to BiDil with the stipulation that it would be indicated for African Americans—that is, sold with a label on the bottle that essentially said the drug was for black people only. To many observers, this governmental support for race-specific pharmaceuticals ratified the false idea that human races are biologically distinct and encouraged the conclusion that health disparities are caused by biological differences that can be resolved through race-specific medicines.

    The MIT conference was convened to explore this new twist on the old tension between social and biological explanations for racial health disparities. Meeting organizers pointed out that the questions raised by BiDil’s approval were especially pressing in light of new claims emerging from the field of human genetics about the ability to detect and speak to racial differences at a molecular level.

    Legal scholar Dorothy Roberts, who explores these issues further in The Problem with Race-Based Medicine (part 9), presented a paper at the conference on the diversity of opinions within the black community about race-based medicines like BiDil. She explained that some black people are skeptical about BiDil because of the long history of medical exploitation of the community, while others see race-specific medicines as a form of atonement for years of neglect by medical researchers. Roberts’s main point was that there was no unified perspective about BiDil in the black community. During the question-and-answer portion of the talk, Juan Cofield, president of the NAACP’s New England Area Conference, stood up and vociferously endorsed BiDil, declaring that There is a consensus in the Black community that this drug is good for Black people. To which Roberts coolly responded, "There isn’t a consensus among the black people in this room."²

    *

    In 2015, the acronym CRISPR hit mainstream discussions. CRISPR is the latest of several recently developed techniques that allow scientists to edit segments of DNA and produce changes to the genetic code of any organism. In scientific and news reports, many researchers and others expressed particular excitement about the prospect of using CRISPR for human gene editing. Some focused on the potential of genetic modifications to treat diseases, including both inherited conditions such as Huntington’s disease and beta thalassemia and pervasive illnesses like cancer.

    Others spoke of a very different vision for CRISPR: using it to edit the genes of human embryos in order to control the traits of future children and generations. While most of these commentators focused on preventing the transmission of serious inherited diseases, they often ignored or downplayed the existence of safer alternatives for meeting the same objective, including embryo screening. And some jumped easily to enthusiasm for reproductive gene editing to create offspring with preferential traits—height, hair color, perhaps even intelligence—that would be permanent and heritable for all future generations.

    This vision represents the most recent in a long line of proposals to alter the human germ line in perpetuity—that is, using science to engineer future generations according to current social preferences. Human germ-line engineering raises a host of thorny ethical questions. Who would decide which social or medical traits to insert into or weed out of the gene pool? Would it be solely up to parents? What could happen when individual preferences—for a particular kind of musculature, a certain eye color, or even skin color—align with historically fraught concepts about which children are more socially valuable and which groups should be marginalized?

    These questions have been addressed in policy conversations, intellectual debates, and public deliberations around the world for the past several decades. Many have concluded that if human biotechnology can deliver the power and incentive to engineer enhancements and inequality into the germline, the potential for new forms of discrimination and social conflict is profound. As a result, dozens of countries have adopted legal prohibitions on human germline modification.

    It is in this context that Nobel Prize–winning molecular biologist Craig Mello explored the implications of human gene editing during a radio interview on WBUR, Boston’s public radio station. When asked about the ethics of altering the human germline and the potential for new forms of inequality, Mello replied, "If [gene editing technologies] were safe, and if we have the knowledge to make improvements in the human germline, then it might be unethical not to do so."³

    •  •  •

    Medical ethics, a collection of professional norms designed to give guidance to doctors on how to manage health care dilemmas in a thoughtful and humane manner, dates back many centuries. Its most notable antecedent is the Hippocratic Oath, the modern version of which implores physicians to, in essence, Do no harm. In the broadest sense, modern medical ethics has provided professional standards meant to guide physicians through the significant moral challenges that confront those engaged in the work of healing. Over the course of the nineteenth century and early to mid-twentieth century, medical ethics became, as Albert Jonsen states in his definitive work, The Birth of Bioethics, almost synonymous with rules for professional cohesion and respectability.

    In other words, medical ethics organizes the private practice of medicine in a manner that aligns with the social virtues and preferences of Western thought as expressed through a mixture of religious, philosophical, and secular traditions. Key to this ideal is the notion that physicians and other medical practitioners, guided by these ethical norms, will typically make the right choices without any meaningful oversight beyond their peers or professional organizations.

    To the extent that early twentieth-century medical ethics situated itself as a field that could rely largely on physician and researcher discretion to promote health and well-being, its limitations were grossly exposed in the wake of World War II and the Holocaust. The Nuremberg trials drew worldwide attention to the central role that physicians and researchers played in facilitating unconscionable human suffering in a twisted pursuit of advancing medical science. The role of medical doctors and researchers in concentration camps was nothing short of ghastly; people were subjected to inhumane experiments and purposefully given certain diseases and poisons just so researchers could study the precise mechanisms through which they suffered and died. However, while Nazi researchers received the bulk of the global criticism for these cruel practices, questionable research and exploitation of vulnerable populations were not unknown in other parts of the world, particularly the United States.

    The Nuremberg trials began the process of raising questions about the wisdom of relying on professional norms to protect patients and research subjects from harmful practices. During this same postwar period, other scandals such as the Tuskegee syphilis experiments came to light, creating public pressure for physicians and researchers to be more thoughtful and accountable.⁵ Amid these developments and questions came a unique set of deliberations that allowed a new scholarly field—bioethics—to emerge, and a new professional figure—the bioethicist—to claim expertise.

    Thus, in many ways, bioethics was born out of the ashes of the Holocaust.⁶ The field formalized in the latter half of the twentieth century with new technological developments, such as recombinant DNA, assisted reproduction, organ transplants, and life support mechanisms that blurred the line between life and death. As public discussion of these developments increased, the field of bioethics evolved. It staked a claim to providing a detached, secular approach to these profound questions of life and death, one that could be endorsed by governments, private organizations (hospitals, professional associations, etc.), and practitioners regardless of religious affiliation or philosophical belief.

    Notably, the principles set forth in the Belmont Report in the late 1970s and most famously explored in Tom Beauchamp and James Childress’s 1979 book Principles of Biomedical Ethics (now in its 7th edition) have come to dominate bioethical thinking. Known as principlism, this modern approach, which is closely associated with Beauchamp and Childress, provides a common framework by embracing four principles as the foundation of bioethical deliberation: respect for autonomy (antipaternalism, or people should have agency in their decision making), nonmaleficence (do no harm), beneficence (help people), and justice (being thoughtful about the distribution of benefits and burdens).

    In the context of the technological questions and demands for greater transparency that were rapidly arising at the time, the professional field of bioethics that congealed was certainly an important step forward. Bioethics helped transition the manner in which medicine and scientific research handled ethical issues from a mostly private and individually contemplative endeavor largely hidden from public view to a more transparent, outward-facing set of principles that, in theory, could be applied across fields and topics to produce desirable and predictable outcomes for patients and research subjects. Moreover, as public awareness grew about startling new developments such as in vitro fertilization and artificial organs, bioethicists played an important role not only in helping practitioners think through their professional duties but also in assuring the public that an independent party would be an important part of conversations and decisions about moving these new developments forward in an appropriate manner.

    But bioethics as a field has at least three significant limitations. First, as John Evans discusses in A Sociological Account of the Growth of Principlism (part 2), the principlism that drives much of the conversation has an inherently individualist orientation. Principlism largely conceives of bioethical dilemmas as occurring in the relationships between doctors and patients, or researchers and human subjects. As an example, principlism offers a coherent way to determine the types of information that should be communicated in an informed consent procedure for a research study. But it provides a thin vision of how group and social dynamics might be crucial for a realistic understanding of consent. For instance, it leaves much to be desired in terms of how and whether informed consent can be meaningful when recruiting subjects from vulnerable populations without access to basic medical care. While principlism’s justice component offers a foothold for thinking through such issues, this approach has nevertheless proved inadequate for incorporating ethical values outside of individual relationships or transactions.

    Second, as Carl Elliott describes in The Ethicists (part 2), the notion that bioethics provides a detached and independent assessment of the ethical issues surrounding science and medicine does not conform to on-the-ground bioethical practice. Bioethicists are often embedded in the same professional institutions and contexts as the very technologies and industries they are ostensibly overseeing. This can lead to situations in which financial or other professional incentives can obscure bioethicists’ willingness or ability to consistently comport themselves in a manner that aligns with the public interest.

    And lastly, while bioethics can provide a set of guidelines or professional norms, these principles or ideals are typically not translated into enforceable policy mechanisms. Bioethics can inform decision making by institutional review boards, help develop professional standards, and shape a handful of specific regulations such as those pertaining to human research protection. But without any broader regulatory mechanisms to implement these norms, bioethics is largely without teeth in dealing with the deeply profound and transformative social power of many new developments.

    The departure point for this volume is to highlight how these limitations become fully exposed when bioethics’ principlist approach is put in conversation with the social and policy challenges raised by new human genetic and reproductive technologies. This suite of powerful tools and practices carries social and political implications that go far beyond the limited parameters that can be addressed by autonomy, nonmaleficence, beneficence, and justice. The three vignettes at the beginning of this introduction highlight these limitations and tensions. None of the scenarios can be meaningfully assessed without guidance beyond principlism.

    The Happy Workers scenario, for example, draws attention to the particular political context that underlay early responses to the prospect of human reproductive cloning. In an era of relentless attacks on abortion rights, people otherwise sympathetic to concerns about exploitation were perhaps understandably tempted to overlook it and double down on their commitment to choice. Planned Parenthood’s initial unwillingness to foreclose any avenue of reproduction—even one that involved producing cloned insomniac slaves⁷—fortunately did not persist. But this episode dramatizes the inadequacy of a principlist approach for a complex issue playing out on difficult social and political terrain.

    Similarly, the dynamics surrounding race-based medicine cannot be meaningfully understood without considering the remarkably twisted (and at times brutal) history of race and medicine, or taking into account the commercial imperatives leading to BiDil’s development. Questions about, for example, autonomous decision making, or about doing harm versus doing good to individual patients, are tangential to the deeper social and political implications of the US government giving its stamp of approval to medicine premised on the dubious notion of biological race.

    The gene-editing technologies at issue in the third vignette represent perhaps the most consequential of these new technologies—the ability to engineer and redesign human beings, and even humanity. Yet when faced with the prospect of the significant social and political challenges created by such developments, a leading scientist’s ethical sensibilities leads him to ponder issues of individual safety to the exclusion of potentially great social harm.

    In the mid-twentieth century, new technological advances and changing social contexts created the conditions for the private, inward-looking nature of medical ethics to be supplemented by a more public, outward-facing bioethical discourse. Similarly, in the late twentieth and now early twenty-first centuries, new human genetic and assisted reproductive technologies, coupled with the increasingly commercialized conditions of their development and deployment in addition to other social changes, are prompting new and far more public conversations about the proper relationships and negotiations between science and society. This approach places social justice, human rights, and the public interest at the center of its analysis. We call this emerging field, which will inevitably remain in conversation with medical ethics and bioethics, the new biopolitics.

    An entry for the term biopolitics in the Encyclopedia of Bioethics (co--authored by Darnovsky) asserts the following:

    The social and ethical challenges posed by human biotechnologies in the early twenty-first century encompass much broader issues, and capture much greater public attention, than was the case in the early days of the field of bioethics. Biopolitical controversies play out in social realms, including academia, news and online media, and popular culture, and on political stages including the courts, legislatures, and even national elections. And biopolitics is increasingly a focus for civil-society constituencies and public-interest organizations.

    In contrast to bioethics, then, biopolitics focuses on broad social and political dynamics more than on encounters in institutional settings between doctors and patients or between researchers and human subjects. It emphasizes social values and policy proposals more than procedural recommendations and professional guidelines. Though bioethics and biopolitics are in constant conversation with each other, biopolitics is situated largely outside the organizational structures (such as academic departments, hospitals and clinics, institutional review boards, and corporate advisory boards) that are most closely associated with bioethics.

    The term biopolitics is used in a number of academic disciplines, including bioethics, sociology, anthropology, philosophy, and science and technology studies. It is most widely associated with the work of French philosopher Michel Foucault.⁹ What we are calling the new biopolitics is distinct from these prior articulations yet remains a project in formation, with many of its contours and characteristics still blurry. But it is useful to sketch at least five particular concerns that further distinguish it from mainstream bioethical approaches:

    Reckoning with the role of commerce and markets in biomedicine and biotechnology. The new biopolitics is sensitive to the ways in which commercial pressures and market incentives can warp deliberations on the potential social impacts of new human genetic and reproductive technologies. It also pays close attention to how science and medicine are not only healing endeavors but also profit-seeking enterprises that, like all market-oriented ventures, need regulation and oversight.

    Understanding the human genome as part of the common heritage of humanity. The new biopolitics takes seriously that if gene editing or cloning were used for human reproductive purposes, either could alter basic understandings of what it means to be human in ways likely to have cascading effects for all subsequent generations. This approach also suggests greater humility and a precautionary approach in questioning whether we have the wisdom to understand the full range of social and biological consequences associated with, for example, inserting genetic enhancements or deleting genetic challenges from our gene pool. It appreciates statements by international bodies, including the United Nations Educational, Scientific and Cultural Organization; the World Medical Association; and the Human Genome Organization, Ethical, Legal, and Social Issues Committee (the international scientific coordinating body for the Human Genome Project), asserting that the human genome should be considered a symbol and a part of the common heritage of humanity.¹⁰

    Avoiding technical developments and genetic narratives that embed social and political preferences at the molecular level. The new biopolitics is sensitive to the discriminatory attitudes that may allow social preferences to guide the way human biotechnologies are implemented and to the deleterious impacts this can have on the preconditions for, and basic notions of, social justice. Human biotechnologies have the ability to reaffirm social preferences and lines of difference at a molecular level. As one example, race-specific medicines treat health disparities as a function of natural differences rather than as products of social inequality. As another example, using assisted reproductive technologies to identify and eliminate embryos that contain conditions many consider fully compatible with health and happiness effectively reinforces the view that bodies rather than social and political context are always the disabling factor. (See Disability Equality and Prenatal Testing: Contradictory or Compatible? by Adrienne Asch in part 8.)

    Ensuring democratic oversight of powerful human biotechnologies. The new biopolitics expresses skepticism about the ability of private companies or associations, professional bioethicists, or self-enforced rules to ensure that human biotechnologies truly serve the public interest. The choices being put in front of us by new human biotechnologies are profoundly political; they create winners and losers, shape our societies (and in some cases our very selves), and implicate society’s deepest values about who we are and what we want to be. It would be remarkably unwise to hand such decision making to any one group of experts or professionals and extremely reckless to leave it to the market. Therefore, a new biopolitical approach not only promotes greater transparency but also much greater civic participation and inclusive democratic engagement in decisions about whether and how new human genetic and assisted reproductive technologies should be developed, deployed, and governed. It calls for public engagement and insists that this involve robust support for thoughtful and extended deliberations, so as to enable participation by civil society, public interest and faith-based organizations, community groups, labor unions, and others.

    Steering clear of a new market-driven eugenics. A central concern of the new biopolitics is that particular human genetic and assisted reproductive technologies may lead to a new form of eugenics. In contemplating this prospect, some observers argue that we no longer need to fear state involvement in citizens’ reproductive choices or government efforts to weed out undesirable populations—that the sterilization laws, immigration restrictions, and outright genocides justified by eugenics are earmarks of a bygone (late nineteenth- and early twentieth-century) era. But a new eugenics, driven by market forces as opposed to state discrimination, could look eerily similar. Collective efforts to enhance future generations along the lines of socially acceptable aesthetic norms, or market dynamics that encourage using IVF-based screening technologies to avoid certain traits, may allow racist, sexist, and ableist norms to dictate who is an accepted member of society.

    •  •  •

    Our ambition for this anthology is that it will crystallize and promote the growth of the new biopolitics as a field of public, policy, and scholarly concern. Though they focus on developments in the United States, the volume’s essays and articles articulate a range of concerns and perspectives prompted by new human biotechnologies worldwide. They explore the troubling directions in which these technologies and associated ideologies can lead without proper care, and offer an alternative vision for negotiating the power-laden fault lines among the life sciences, the biotechnologies they spawn, and society. The volume’s specific focus—forgoing traditional bioethical topics¹¹ such as end-of-life care and organ transplants—stems from the particular dilemmas created for bioethics by contemporary financial and political conditions and by new and emerging technologies. Many of the contributions also explore how these new dilemmas speak to the field’s original core themes, like eugenics, the relationship of science and medicine to vulnerable populations, and the need for greater oversight of researchers and medical professionals.

    The new biopolitical perspective this volume presents may provide useful insights for study and critique in other fields (such as environmental studies or urban planning) that involve social justice, human rights, and public interest values. We leave such extensions to future scholars, and focus here on the ways in which the profound challenges created by powerful new human biotechnologies call for a fresh framework of analysis and assessment. The new biopolitics doesn’t provide definitive answers but guides us toward questions that prioritize social justice and human rights and suggests fruitful ways to explore them.

    The articles in parts 1 through 10 are all reprinted or excerpted from previous publications. This heterogeneous collection exemplifies what has until now been a loosely aligned group of writings that focus on the shortcomings and limitations of mainstream bioethical approaches, in search of deeper inquiry into the intensely social and political nature of human biotechnologies. Not all contributors to this volume explicitly identify with this new biopolitical vision. As editors, our goal is to highlight the connections that some authors themselves may not immediately see but that, taken as a web of concerns, give birth to an alternative understanding of the appropriate relationship between science, medicine, and society. Inasmuch as multiple excerpts touch on a similar theme or topic, this book draws strength from demonstrating the many standpoints from which particular events can be understood, challenged, and critiqued. The original foreword by Troy Duster and original afterword by Patricia J. Williams are extraordinarily rich additions to this field-in-formation.

    Part 1, The Biopolitical Critique of Bioethics: Historical Context, and part 2, Bioethics and Its Discontents, situate the new biopolitics in the contexts from which it emerges. The contributions in part 1 consider historical examples of techno-scientific abuses and begin to demonstrate the many linkages between past, present, and future. Part 2 collects articles that call attention to some of the limitations of mainstream bioethics.

    The articles in part 3, Emerging Biotechnologies, Extreme Ideologies: The Recent Past and Near Future, focus on the technological enthusiasts in the United States and elsewhere, who advocate the unfettered use of biotechnologies for extreme scenarios that include designer babies and posthumans. Several contributors consider how such visions and ideologies threaten social justice, human equality, and the common good.

    The next three sections examine the commercial context of biotechnological research and development. Contributors to part 4, Markets, Property, and the Body, consider how powerful market forces affect researchers, doctors, patients, clinical trial participants, universities, institutional review boards, and the field of professional bioethics. Part 5, Patients as Consumers in the Gene Age, takes a critical look at precision medicine, big genomics, and similar declarations of revolutions in health care, asking how we should weigh their promises against their perils and understand other costs and opportunities. In part 6, Seeking Humanity in Human Subjects Research, contributors focus on problems in biomedical research involving human subjects, examining the economic, career, and other pressures and incentives that underlie them.

    Part 7, Baby-Making in the Biotech Age, and part 8, Selecting Traits, Selecting Children, turn to assisted reproductive technologies. Contributors to part 7 look through a social justice lens at troubling aspects of the fertility industry, focusing on the United States and on cross border fertility arrangements. Part 8 explores the selection technologies currently in use in the context of assisted reproduction, including how they are changing the experience of pregnancy and the ethical and social challenges they pose.

    Part 9, Reinventing Race in the Gene Age, examines the scientific fallacies behind the resurgence of race as a biological concept and the dangerous social consequences this entails. In part 10, Biopolitics and the Future, we look forward, exploring opportunities and mechanisms for incorporating new biopolitical ways of thinking into scientific discourses, policy debates, and public understandings of human biotechnologies to foster a new biopolitical imagination that is unafraid to confront the social and moral challenges they raise.

    NOTES

    1. Marcy Darnovsky, Political Science, Democracy 13 (2009): 46.

    2. Anne Pollock, Medicating Race: Heart Disease and Durable Preoccupations with Difference (PhD diss., MIT, 2007), 243.

    3. Re-engineering Human Embryos, On Point, WBUR 90.9, April 28, 2015, accessed November 17, 2016, www.wbur.org/onpoint/2015/04/28/human-embryo-genetic-engineering-china.

    4. Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 2003), 8.

    5. Susan Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel Hill: University of North Carolina Press, 2009).

    6. Arthur Caplan, quoted in George Annas, American Bioethics: Crossing Human Rights and Health Law Boundaries (Oxford: Oxford University Press, 2004), 161.

    7. Darnovsky, Political Science.

    8. Marcy Darnovsky and Emily Beitiks, Biopolitics, in Bioethics, 4th ed., ed. Bruce Jennings (Farmington Hills, MI: Gale Cengage Learning, 2014).

    9. Michel Foucault, The Birth of Biopolitics: Lectures at the Collège de France, 1978–1979, ed. Michel Senellart, trans. Graham Burchell (Basingstoke, UK: Palgrave Macmillan, 2008).

    10. United Nations Educational, Scientific and Cultural Organization Declaration on the Human Genome and Human Rights, Article 1 (Paris: UNESCO, 1997); World Medical Association, Declaration on the Human Genome Project (September 1992), Bulletin of Medical Ethics 87 (1993): 9–10; Human Genome Organization, Ethical, Legal, and Social Issues Committee, Statement on the Principled Conduct of Genetics Research (1996), accessed on November 17, 2016, www.eubios.info/HUGO.htm.

    11. Other anthologies on bioethics explore these traditional areas in more depth. See, for example, Vardit Ravitsky, Autumn Fiester, and Arthur L. Caplan, eds., The Penn Center Guide to Bioethics (New York: Springer, 2009); and Jessica Pierce and George Randels, Contemporary Bioethics: A Reader with Cases (Oxford: Oxford University Press, 2009).

    PART I

    The Biopolitical Critique of Bioethics

    Historical Context

    •    •    •    •    •

    A full appreciation for what is at stake with new human biotechnologies requires an examination of past social and political efforts to use biological explanations to understand human differences and group disparities. From skull measurements attempting to compare the intelligence of different racial groups to hereditarian theories of criminality, the scientific method has at times been used to make disparate social and health outcomes appear to be a function of who people are rather than the different treatments afforded to them or the biases embedded in the methods themselves. Some of these efforts took place under the banner of eugenics, the science of improving a human population through controlled breeding.

    Many people associate eugenics solely with the Nazi regime and the Holocaust and assume that eugenic beliefs and practices were limited to that nightmarish chapter of European history. In fact, eugenics has a longer history, a broader reach, and greater persistence.

    In the early twentieth century, eugenic ideologies and practices drew on genetic theories that provided scientific cover for policy decisions about who should and shouldn’t reproduce—decisions largely informed by discriminatory attitudes toward marginalized groups. In the United States, a widespread eugenics movement led to the forced sterilization of tens of thousands of people considered unfit to reproduce, stringent immigration restrictions on undesired populations, and public policies that encouraged fitter families to produce more children.

    Eugenic ideas and rhetoric pioneered in the United States were taken up by the Third Reich, where they were used to justify the extermination of Jews, people with disabilities, and others. Revelations of these horrors led eugenic policies and practices to largely recede from public life. But as later sections of this anthology explain, these beliefs—along with more subtle but still pernicious assumptions about the relationship between biology and inequality—persisted throughout the twentieth century and are still with us.

    In The Biological Inferiority of the Undeserving Poor, Michael B. Katz argues that in the late eighteenth and early nineteenth centuries, a harsh new idea of poverty and poor people as different and inferior began to replace the ancient and biblical view that poverty reflected God’s will. Part of this shift, the idea that poverty is caused by faulty heredity, fed into twentieth-century eugenic theories that justified racism and social conservatism. Katz considers this account to be a cautionary note from history about the uses of science and a warning to be vigilant and prepared.

    Alexandra Minna Stern’s Making Better Babies: Public Health and Race Betterment in Indiana, 1920–1935 paints a fascinating picture of the better babies contests that were often held at state fairs under the sponsorship of American eugenicists. More than just a lively spectacle for fairgoers, she argues, these contests brought public health, ‘race betterment,’ and animal breeding together in a unique manner. Stern suggests that the better babies contests demonstrate that public health and eugenics were not, as is often assumed, antithetical movements separated by a conceptual gulf between environment and heredity.

    In Eugenics and the Nazis: The California Connection, Edwin Black discusses the considerable influence of the American eugenics movement on Adolf Hitler and the Nazi genocide. Black briefly sketches the prewar intellectual and political exchanges between German and American eugenicists and notes that Germans who were tried for genocide after the war cited California’s eugenic sterilization law in their defense. Black suggests that today, as the capabilities and reach of human genetic technologies expand, it is dangerous to ignore the histories and legacies of German and American eugenic crimes.

    Why the Nazis Studied American Race Laws for Inspiration is a provocative piece by James Q. Whitman that expands our understanding of the intellectual and ideological synergies between Nazi Germany and the United States during this period. It explores the extent to which Jim Crow and other forms of institutional racism served as models for Nazi lawmakers as they remade German society. The admiration of Nazis for the United States’ race laws is chilling and suggests, as Whitman notes, that Americans may need to engage in deeper reflection to understand our nation’s role in producing the atrocities committed during the Holocaust.

    Lennard J. Davis examines the concepts of the norm and the normal body in Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century. He notes that eugenicists, who aim to normalize those who are nonstandard, tend to group together all traits that they consider undesirable. They may mention, in the same breath, criminals, the poor, and people with disabilities. Davis argues that revers[ing] the hegemony of the normal and institut[ing] alternative ways of thinking about the abnormal are important for developing consciousness of disability issues.

    In the final contribution of this section, Osagie K. Obasogie considers the legacy of Robert Edwards, who was honored with a 2010 Nobel Prize for his work developing in vitro fertilization. Unnoted in the coverage of the award was Edwards’s long and active membership in Britain’s Eugenics Society and his understanding of IVF and other reproductive and genetic technologies in a clearly eugenic framework. Although there is nothing inherently eugenic about IVF, Obasogie writes, being able to manipulate human conception outside of the womb is an essential platform technology for any modern eugenic goal.

    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 refractory despite efforts to eliminate them. Second, its initial formulation and reformulation rely on bridging concepts that try to parse the distance between heredity and environment through a kind of neo-Lamarkianism. These early bridges invariably crumble. Third, hereditarian ideas always have been supported by the best science of the day. This was the case with the ideas that ranked races, underpinned immigration restrictions, and encouraged compulsory sterilization—as well as those that have written off the intellectual potential of poor children.

    In its review of the biological strand in American ideas about poverty, this article begins in the 1860s with the first instance of the application of hereditarian thought I have discovered and moves forward to social Darwinism and eugenics, immigration restriction, and early IQ testing. It then picks up the story with Arthur Jensen’s famous 1969 article in the Harvard Educational Review, follows it to the Bell Curve, and ends with the astonishing rise of neuroscience and the field of epigenetics. It concludes by arguing that despite the intelligence, skill, and good intentions of contemporary scientists, the history of biological definitions of poor persons calls for approaching the findings of neuroscience with great caution.

    In 1866 the Massachusetts Board of State Charities, which had oversight of the state’s public institutions, wrote, "The causes of the evil [the existence of such a large proportion of dependent and destructive members of our community] are manifold, but among the immediate ones, the chief cause is inherited organic imperfection, vitiated constitution or poor stock" ([MA] State Board of Charities 1866). This early proclamation of the biological inferiority of the undeserving poor arose as a response to institutional failure. Recurrent institutional and programmatic failure has kept it alive in writing about poverty ever since, supported always by scientific authority.

    Beginning in the early nineteenth century, reformers sponsored an array of new institutions designed to reform delinquents, rehabilitate criminals, cure the mentally ill, and educate children. Crime, poverty, and ignorance, in their view, were not distinct problems. The criminal, pauper, and depraved represented potentialities inherent in all people and triggered by faulty environments. Poverty and crime, for instance, appeared to cause each other and to occur primarily in cities, most often among immigrants. This stress on the environmental causes of deviance and dependence, prominent in the 1840s, underpinned the first reform schools, penitentiaries, mental hospitals, and, even, public schools (Katz [1968] 2001).

    By the mid-1860s it had become clear that none of the new institutions built with such optimism had reached their goals. They manifestly failed to rehabilitate criminals, cure the mentally ill, reeducate delinquents, or reduce poverty and other forms of dependence. The question was, why? Answers did not look hard at the failures in institutional design and implementation or at the contexts of inmates’, prisoners’, and patients’ lives. Rather, they settled on individual-based explanations: inherited deficiencies. The Massachusetts Board of State Charities supported its belief that the inheritance of acquired characteristics (later known as Lamarkianism) reproduced the undeserving poor as well as criminals, the mentally ill, and other depraved and dependent individuals with scientific evidence from physiologists which emphasized the toxic impact of large amounts of alcohol on the stimulation of the animal passions and the repression of "will" ([MA] State Board of Charities 1866). . . .

    By the 1920s, two initially separate streams—social Darwinism and eugenics—converged in the hard-core eugenic theory that justified racism and social conservatism. Social Darwinism attempted to apply the theory of Darwinian evolution to human behavior and society. Social Darwinists—whose leading spokesperson, Herbert Spencer, enjoyed a triumphant tour of the United States in 1882—insisted on the heritability of socially harmful traits, including pauperism, mental illness, and criminality, and on the harmful effects of public and private charities that interfered with the survival of the fittest. They viewed the unfit not only as unworthy losers but as savage throwbacks to a primitive life. Hereditarian beliefs thus fed widespread fears of race suicide giving an urgency to the problem of population control. The ignorant, the improvident, the feeble-minded, are contributing far more than their quota to the next generation, warned Frank Fetter of Cornell University (Bender 2009, 202).

    The English scientist Francis Galton originally coined the term eugenics in 1883 to denote the improvement of human stock by giving the more suitable races or strains of blood a better chance of prevailing speedily over the less suitable. In the United States, eugenic science owed more to the genetic discoveries of Gregor Mendel, first published in 1866 but unrecognized until the end of the century, than to mathematical genetics as practiced by Galton and his leading successor Karl Pearson. In 1904 Charles Davenport, the leading US eugenics promoter, used funds from the newly established Carnegie Corporation to set up a laboratory at Cold Springs Harbor on Long Island. Davenport looked forward to the new era of cooperation between the sociologist, legislator, and biologist, who together would purify our body politics of the feeble-minded, and the criminalistic and the wayward by using the knowledge of heredity. Eugenics entered public policy through its influence on immigration restriction and social reform as well as through state sterilization laws. Indiana passed the first of these in 1907. By the end of the 1920s, twenty-four states passed laws permitting the involuntary sterilization of the mentally unfit, a practice upheld by the US Supreme Court in 1920 in Buck v. Bell (Kevles 1985).

    In the United States, the application of evolutionary and genetic ideas to social issues gained traction in the late nineteenth century as a tool for explaining and dealing with the vast changes accompanying industrialization, urbanization, and immigration. Eugenics drew support from both conservatives and progressives and underlay the emerging consensus on the need for immigration restriction that resulted in the nationality-based immigration quotas legislated by Congress in 1924. In the early twentieth century, point out Hilary Rose and Steven Rose in Genes, Cells and Brains, barring Catholics, eugenics commanded the support of most EuroAmerican intellectuals—not just racists and reactionaries but feminists, reformers, and Marxists (Rose and Rose 2012, 129). Conservatives found in eugenics and social Darwinism justification for opposing public and private charities that would contribute to the reproduction of the unfit. But eugenics found enthusiasts as well in birth control advocate Margaret Sanger and in settlement house workers preoccupied with the alleged degeneracy of an immigrant working class. Like their predecessors on the Massachusetts Board of State Charities decades earlier, they turned to the heritability of acquired characteristics and the plasticity of human nature to reconcile their belief in the biological foundation of physical and moral degeneration with their commitment to the power of social reform to build character and instill habits.

    Nonetheless, by the 1920s, cracks appeared in the bridge that linked the environmentalists and hereditarians. Hereditarians took an increasingly hard line, manifest in the new science of intelligence tests as well as in their continued advocacy of sterilization. Developed by the French psychologist Alfred Binet, intelligence tests were brought to the United States in 1880 by American psychologist Henry H. Goddard who first applied them at the Vineland, New Jersey, Training School for Feeble-Minded Boys and Girls—he directed its new laboratory for the study of mental deficiency. Other psychologists picked up Goddard’s work on intelligence testing, extended it to other populations, and experimented with different methods. Lewis Terman at Stanford, one of the most prominent . . . proponent[s] of the hereditarian view of intelligence, introduced the term IQ, which stood for intelligence quotient, a concept developed in 1912 by William Stern, a German psychologist. Intelligence testing, which at first aroused skepticism and hostility, received a tremendous boost during World War I, when a trial of the tests on more than 1.7 million people during the war dramatically brought them to public attention. The tests purported to show that nearly one-fourth of the draft army could not read a newspaper or write a letter home and, by implication, that the mental ages of the average white and black Americans were, respectively, thirteen and ten (Gould 1980).

    Davenport, Goddard, and others blamed the results for whites on the immigration of inferior races and used them as ammunition in their advocacy of immigration restriction. The tests, they argued, demonstrated the genetic heritability of mental deficiency. These ideas worked their way into public education in the 1920s, underpinning the educational psychology taught in teacher preparation courses and the massive upsurge in testing used to classify students, predict their futures, and justify unequal educational outcomes. Terman and other psychologists, points out historian Paul Fass, were quick to point out that opening up avenues of opportunity to the children of the lower socioeconomic groups probably made no sense; they did not have the I.Q. points to compete. In the minds of its prominent advocates, intelligence testing was linked with beliefs that science had demonstrated the primacy of heredity over environment and that the immigration of inferior races was driving America toward a dysgenic future (Fass 1989).

    Even before the 1920s, strains between eugenicists and reformers had opened fissures in the consensus around the heritability of mental and character defects. Eugenicists’ commitment to germ plasm pulled them away from the environmental and neo-Lamarkian theories underpinning Progressive reform. Then, after the 1920s, biochemistry and the rise of the Nazis combined to drive eugenics into eclipse and disrepute. The more research revealed about the complexity of human genetics, the less defensible even reform genetics appeared. The American Eugenics Society praised Hitler’s 1933 sterilization law while German eugenicists flattered their American counterparts by pointing out the debt they owed them, and the Nazi regime welcomed and honored prominent American eugenicists (Bender 2009).

    The fall of eugenics left the field open to environmental explanations. Nurture rather than nature became the preferred explanation for crime, poverty, delinquency, and low educational achievement. The emphasis on environment fit with the emergent civil rights movement, which rejected racial, or biological, explanations for differences between blacks and whites—explanations that had been used to justify slavery, lynching, segregation, and every other form of violent and discriminatory activity. Hereditarian explanations fit badly, too, with the optimism underlying the War on Poverty and Great Society that assumed the capacity of intelligent government action to ameliorate poverty, ill health, unemployment, and crime.

    Nonetheless, by the late 1960s a new eugenics began to challenge the environmental consensus. Its appearance coincided with the white backlash against government-sponsored programs favoring African Americans and the disenchantment following on what appeared to be the failure of programs of compensatory education designed to make up for the culturally deficient homelife of poor, especially poor black, children. Psychologist Arthur R. Jensen’s 1969 article in the Harvard Educational Review, How Much Can We Boost IQ and Scholastic Achievement? led the revival of hereditarianism. Compensatory education, Jensen argued, has been tried and it apparently has failed. The reason was that compensatory education programs ran up against a genetic wall. Poor, minority children lacked the intelligence to profit from them (Jensen 1969).

    Jensen’s article provoked a furious counter-attack. Nonetheless, the controversy breathed new life into research and writing on the influence of heredity on intelligence and seeped into the rationales for failure offered by educators. (I recall sitting in a meeting in the early 1970s with a high-level Toronto school administrator who, in a discussion of the low achievement of poor students, said, in effect, well, Jensen has told us why.)The new field of sociobiology, founded by Harvard zoologist E.O. Wilson, a leading authority on insect societies, reinforced the renewed emphasis on heritability. Sociobiology, Wilson wrote, focused on the study of the biological basis of social behavior in every kind of organism, including man (1975, 39). This new emphasis on heritability, however, met strong scientific as well as political criticism and failed to clear away the taint that still clung to eugenics and genetically based theories of race, intelligence, and behavior. The idea that the undeserving poor were genetically inferior had not been wiped from the map by any means, but it remained muted, unacceptable in most academic circles.

    In 1994, in their widely publicized and discussed The Bell Curve, Richard Herrnstein and Charles Murray—whose notorious Losing Ground had served as a bible for anti–welfare state politicians—challenged the reigning environmentalist view of intelligence. Success in American society, they argued, was increasingly a matter of the genes people inherit. Intelligence, in fact, had a lot to do with the nation’s most pressing social problems, such as poverty, crime, out-of-wedlock births, and low educational achievement. They wrote that "low intelligence is a stronger precursor of poverty than low socioeconomic background. Poverty, they argued, is concentrated among those with low cognitive ability, which, itself, was largely inherited. It also was racially tinged because blacks, they found, revealed lower cognitive ability at every socioeconomic level. Evidence points toward a genetic factor in cognitive ethnic differences because blacks and whites differ most on tests measuring g, or general intelligence," which is a fixed, inherited index of mental capacity (Herrnstein and Murray 1994, 117, 127, 371, 270).

    . . . Despite assaults in the public media and by scholars, hundreds of thousands of copies of the 800-plus page hardcover edition of the book were sold. The Bell Curve is best understood not as a popularization of science but as an episode in the sociology of knowledge. Clearly, even if it often did not dare speak its name, the suspicion remained alive that heredity underlay the growth and persistence of the underclass and the black-white gap in educational achievement, which seemed to many impervious to increased public spending or reform. . . .

    From the 1990s onward, a profusion of new scientific technologies has provided the tools with which to explore mechanisms underlying the linkages between biology and society and fostered the astounding growth of the bioscience industry in genetics (the Human Genome Project); stem cell research; and, most recently, neuroscience. Teachers, point out Hilary and Steven Rose, report receiving up to seventy mailshots a year promoting a variety of neurononsense. . . . The snake-oil entrepreneurs are in there selling hard to teachers who are without the protection provided by clinical trials and other tools available to physicians (2012, 275).

    With astonishing acceleration, neuroscience, evolutionary psychology, genomics, and epigenetics emerged as important scientific fields—in practice, often combined in the same programs. Neuroscience and other biological advances promised new ways of explaining social phenomena, like crime, and medical issues, such as the black-white gap in cardiovascular diseases, the increase in diabetes, the rise of obesity, and the origins and treatment of cancer-related disease. They promised, as well, the possibility of understanding how the brain ages and how Alzheimer’s disease and dementia might be mitigated or delayed. Research focuses, too, on how the environmental stresses associated with poverty in childhood could damage aspects of mental functioning and learning capacity with lasting impact throughout individuals’ lives, and, some scientists believe, beyond through the inheritance of acquired deficiencies (Stricker 2009).

    In its January 18, 2010, cover story, Time announced, The new field of epigenetics is showing how your environment and your choices can influence your genetic code—and that of your kids. Epigenetics, the article explained, is the study of changes in gene activity that do not involve alterations to the genetic code but still get passed down to at least one generation. These patterns of gene expression are governed by the cellular material—the epigenome—that sits on top of the genome, just outside it. . . . It is these ‘epigenetic’ marks that tell your genes to switch on or off, to speak loudly or whisper. It is through [epigenetic] marks that environmental factors like diet, stress and prenatal natal nutrition, which can make an imprint on genes, are transmitted across generations. More soberly, the eminent child psychiatrist Sir Michal Rutter offered this definition: The term ‘epigenetics’ is applied to mechanisms that change genetic effects (through influences on gene expression) without altering gene sequence. Hilary and Steven Rose report [that] . . . genes are no longer thought of as acting independently but rather in constant interaction with each other and with the multiple levels of the environment in which they are embedded. . . .

    Epigenetics found such a receptive audience, in part, because once again scientific advance coincided with a major conundrum—the persistent achievement gap between blacks and whites which bedeviled educators. A large literature suggested a variety of sources, most of which focused in one way or another on the handicaps associated with growing up in poverty while the proponents of hereditary explanations lurked in the background. What the environmentalists lacked was a mechanism that explained exactly how the environment of poverty was translated into low school achievement. This is what epigenetics offered. It promised as well to parse the acrimonious differences between environmentalists and hereditarians in explaining the sources of criminality and virtually all other behavior (Noguera 2013).

    The breathless embrace of epigenetics ran ahead of the evidence about the heritability of acquired characteristics and limits of existing epigenetic knowledge. . . . Epigenetics has facilitated and revived the reconciliation of hereditarianism and reform that flourished before social Darwinism in the late 1860s and then again in the Progressive Era, before splitting apart in the 1920s. Epigenetics promises to move beyond the long-standing war between explanations for the achievement gap, persistent poverty, crime, and other social problems based on inheritance and those that stress environment. It gives scientific sanction for early childhood education and other interventions in the lives of poor children. As with earlier invocations of science, popular understanding fed by media accounts threatens to run ahead of the qualifications offered by scientists and the limits of evidence.

    Herein lies the danger. In the past, the link between hereditarianism and reform proved unstable, and when it broke apart the consequences were ugly. Even when in place the link supported racially tinged immigration reform and compulsory sterilization—all in the name of the best science. Indeed, every regime of racial, gender, and nationality-based discrimination and violence has been based on the best science of the day. It is when scientists and doctors insist that their use of race is purely biological, cautions legal scholar and sociologist Dorothy Roberts, that we should be most wary. Philosopher Jesse J. Prinz warns that when we assume that human nature is biologically fixed, we tend to regard people with different attitudes and capacities as inalterably different. We also tend to treat differences as pathologies (2012, 4).

    It is not a stretch to imagine epigenetics and other biologically based theories of human behavior used by conservative popularizers to underwrite a harsh new view of the undeserving poor and the futility of policies intended to help them. This is not the aim, or underlying agenda, of scientists in the field, or a reason to try to limit research. It is, rather, a cautionary note from history about the uses of science and a warning to be vigilant and prepared.


    The Undeserving Poor: America’s Enduring Confrontation with Poverty 2e by Michael B. Katz (2013): pp. 29–49. By permission of Oxford University Press USA. Due to space limitations, portions of this chapter have been deleted or edited from the original.

    REFERENCES

    Arthur R. Jensen Dies at 89: Set Off Debate around IQ. 2012. New York Times, November 2.

    [Massachusetts] State Board of Charities. 1866. Second Annual Report of the [Massachusetts] State Board of Charities to Which Are Added the Reports of the Secretary and the General Agent of the Board. Public Document 19.

    Bender, Daniel. 2009. American Abyss: Savagery and Civilization in the Age of Industry. Ithaca, NY: Cornell University Press.

    Boyce, Thomas, Maria B. Sokolwski, and Gene E. Robinson. 2012. Toward a New Biology of Social Adversity. PNAS 109 (supplement 2): 17143.

    Carey, Nessa. 2012. The Epigenetics Revolution: How Modern Biology Is Rewriting Our Understanding of Genetics, Disease, and Inheritance. New York: Columbia University Press.

    Dain, Norman.

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