Volume 20, Issue 7, July 2020, Page 153-155.

An incisive examination of bioethics and American healthcare, and their profound affects on American culture over the last sixty years, from two eminent scholars. An eye-opening look at the inevitable moral choices that come along with tremendous medical progress, Everybody Wants to Go to Heaven but Nobody Wants to Die is a primer for all Americans to talk more honestly about health care. Beginning in the 1950s when doctors still paid house calls but regularly withheld the truth from their patients, (...) Amy Gutmann and Jonathan D. Moreno explore an unprecedented revolution in health care and explain the problem with America’s wanting everything that medical science has to offer without debating its merits and its limits. The result: Americans today pay far more for health care while having among the lowest life expectancies and highest infant mortality of any affluent nation. Gutmann and Moreno—“incisive, influential, and pragmatic thinkers” (Arthur Caplan)—demonstrate that the stakes have never been higher for prolonging and improving life. From health care reform and death-with-dignity to child vaccinations and gene editing, they explain how bioethics came to dominate the national spotlight, leading and responding to a revolution in doctor-patient relations, a burgeoning world of organ transplants, and new reproductive technologies that benefit millions but create a host of legal and ethical challenges. With striking examples, the authors show how breakthroughs in cancer research, infectious disease, and drug development provide Americans with exciting new alternatives, yet often painful choices. They address head-on the most fundamental challenges in American health care: Why do we pay so much for health care while still lacking universal coverage? How can medical studies adequately protect individuals who volunteer for them? What’s fair when it comes to allocating organs for transplants in truly life-and-death situations? A lucid and provocative blend of history and public policy, this urgent work exposes the American paradox of wanting to have it all without paying the price. (shrink)

The most widely debated conception of democracy in recent years is deliberative democracy--the idea that citizens or their representatives owe each other mutually acceptable reasons for the laws they enact. Two prominent voices in the ongoing discussion are Amy Gutmann and Dennis Thompson. In Why Deliberative Democracy?, they move the debate forward beyond their influential book, Democracy and Disagreement.What exactly is deliberative democracy? Why is it more defensible than its rivals? By offering clear answers to these timely questions, Gutmann and (...) Thompson illuminate the theory and practice of justifying public policies in contemporary democracies. They not only develop their theory of deliberative democracy in new directions but also apply it to new practical problems. They discuss bioethics, health care, truth commissions, educational policy, and decisions to declare war. In "What Deliberative Democracy Means," which opens this collection of essays, they provide the most accessible exposition of deliberative democracy to date. They show how deliberative democracy should play an important role even in the debates about military intervention abroad.Why Deliberative Democracy? contributes to our understanding of how democratic citizens and their representatives can make justifiable decisions for their society in the face of the fundamental disagreements that are inevitable in diverse societies. Gutmann and Thompson provide a balanced and fair-minded approach that will benefit anyone intent on giving reason and reciprocity a more prominent place in politics than power and special interests. (shrink)

The meaning of optimality and economy in phylogenetics and evolutionary biology is discussed.It can be shown that the prevailing concepts of optimality and economy are equivocal as they are not based on strict theoretical positions and as they have a variable meaning in different theoretical contexts. The ideas of optimality and economy can be considered to be identical with the expectation of a relatively simple order in a particular field of study. Although there exists no way of inferring one or (...) several methods of solving scientific problems from the presupposed idea of economy and optimality, a lack of motivation for scientific investigations would result if the concepts of economy and optimality in nature were dropped. (shrink)

Legal restrictions of the right to self-determination increasingly pretend to be compatible with the liberal concept of autonomy: they act upon a ‘soft’ or autonomy-orientated paternalistic rationale. Conventional liberal critique of paternalism turns out to be insensitive to the intricate normative problems following from ‘soft’ or ‘libertarian’ paternalism. In fact, these autonomy-oriented forms of paternalism could actually be even more problematic and may infringe liberty rights even more intensely than hard paternalistic regulation. This paper contributes to the systematic differentiation of (...) soft and hard paternalism by discussing the (legal) concept of autonomy and elaborates the moral and legal limits of autonomy-orientated paternalism. (shrink)

Mirror neurons are a particular class of visumotorical neurons, originally discovered in area F5 of the monkey premotorical cortex. They discharge both (1) when the animal performs a specific action and (2) when it observes a similar action. Actually, it is often assumed that this unique functioning could explain different abilities ranging from imitation behaviour to faculty of speech. In this article, we discuss the question what is meant by the expression: The neuron x mirrors the action y by perception (...) z . The problem resulted from the fact, that neurons cannot mirror anything—except in the light of a metaphorical description. How can this metaphorical description be dissolved for a distinct and explicit scientific terminology? The basic steps of our argumentation are as follows. (1) The expression to mirror can be defined in mutual relation between different types of actions in respect of at least two participants: the proponent A, who conducts a special action x (e.g. grapping a peanut (A(x)) and the opponent B who observes these actions y (B(y)) and vice versa. (2) In order to detect different tokens as a type of action and to guarantee the changes of the participants there must be constituted a speech act in a dialogue, in which types of actions are defined by the invariance of special equivalence. (3) The change of the participants represents and defines the metaphorical expression to mirror in the light of a non-metaphorical and reproducible schema. (4) Then, the invariance of the type of action can be identified in different speech acts. Three of them (called narratives) were defined paradigmatically: (4.1) the ethological-narrative; (4.2) the neurophysiological-narrative; (4.3) the language-narrative. (5) These narratives are the modelling and explicit formulations of the primarily metaphorical expression: The neuron x mirrors the action y by perception z. (shrink)

A new edition of the highly acclaimed book Multiculturalism and "The Politics of Recognition," this paperback brings together an even wider range of leading philosophers and social scientists to probe the political controversy surrounding multiculturalism. Charles Taylor's initial inquiry, which considers whether the institutions of liberal democratic government make room--or should make room--for recognizing the worth of distinctive cultural traditions, remains the centerpiece of this discussion. It is now joined by Jürgen Habermas's extensive essay on the issues of recognition and (...) the democratic constitutional state and by K. Anthony Appiah's commentary on the tensions between personal and collective identities, such as those shaped by religion, gender, ethnicity, race, and sexuality, and on the dangerous tendency of multicultural politics to gloss over such tensions. These contributions are joined by those of other well-known thinkers, who further relate the demand for recognition to issues of multicultural education, feminism, and cultural separatism.Praise for the previous edition. (shrink)

Who should have the authority to shape the education of citizens in a democracy? This is the central question posed by Amy Gutmann in the first book-length study of the democratic theory of education. The author tackles a wide range of issues, from the democratic case against book banning to the role of teachers' unions in education, as well as the vexed questions of public support for private schools and affirmative action in college admissions.

American history has been rife with human subjects research scandals, particularly those that involve “vulnerable” populations. State and federal laws and regulations often do not provide any special oversight mechanisms or protections to ensure the ethical and safe inclusion of cognitively impaired adults in research. At the New York State level, repeated efforts have been made to regulate research involving individuals who lack consent capacity. In January 2014, the New York State Task Force on Life and the Law released its (...) Report and Recommendations for Research with Human Subjects Who Lack Consent Capacity, which represents the most recent step in a decades-long process in the state to develop oversight mechanisms that are appropriately sensitive to the fine line between protecting a vulnerable population and impeding the advancement of research. These recommendations may serve as a model for research policy in other states and at the federal level, particularly in light of shifting societal concerns and changing political winds. (shrink)

Despite existing federal and state law and regulation, new human subjects research scandals involving “vulnerable” populations continue to surface. Although existing oversight mechanisms were enacted to ensure voluntary informed consent for participants and institutional review board oversight of HSR, these laws and regulations do not provide any special oversight mechanisms or protections to ensure the ethical and safe inclusion of cognitively impaired adults. The absence of rules to ensure consistently ethical conduct of research involving adults who lack consent capacity may (...) either lead to exploitation of this vulnerable population or the dearth of important research into the broad range of diseases that impair cognition. In other words, while some institutions and investigators are conducting research with this group without guidance, others are taking an extremely conservative approach and are excluding these individuals from research. Without safeguards that are adequate and robust but not overly burdensome, conducting research involving this population is ethically and legally challenging. (shrink)

Ten years ago, Megan Shinal sought the care of neurosurgeon Steven Toms for the surgical treatment of a recurrent nonmalignant tumor in the pituitary region of her brain. In their twenty-minute meeting, Shinal did not make a final decision about which surgical approach she wished to pursue. Subsequently, she spoke with Tom's physician assistant once by phone and once in person, when she signed the consent form, which did not appear to designate which surgical approach she had chosen. During the (...) operation—a total resection—Toms perforated Shinal's carotid artery, resulting in hemorrhage, stroke, brain injury, and partial blindness. The jury found that Toms had fulfilled his informed-consent obligations prior to performing the resection; however, in June 2017, the Supreme Court of Pennsylvania overturned the decision, relying on the Pennsylvania Medical Care Availability and Reduction of Error Act. The court found that the language of the act is unambiguous in its requirement that “a physician's duty to provide information to a patient sufficient to obtain her informed consent is non-delegable.” Presumably, this rule of nondelegation applies beyond the surgical theater to other major treatment decisions. And it is unclear whether it applies to other professionals in a subordinate position to the treating physician, such as residents and fellows. (shrink)

In some sense, bioethics was built on conflicts. Abortion, physician‐assisted suicide, patients’ demand for autonomy all are staple and contentious issues. And the controversies continue to proliferate. What forum best serves such debates? A look at political theories of democracy can help answer that question. The most promising for bioethics debates are theories that ask citizens and officials to justify any demands for collective action by giving reasons that can be accepted by those who are bound by the action. This (...) conception has come to be known as deliberative democracy. (shrink)

This book makes a significant contribution to the tradition of liberal political theory: it explores the foundations and limits of the idea of equality within that theory and offers a sustained argument for a persuasive new view of liberalism. Liberal thinking has always displayed a tension between the claims of liberty and those of equality. Professor Gutmann examines the contributions of liberal theorists from Locke to Rawls on the subject of two kinds of equality - equality of opportunity to participate (...) and the equal distribution of economic goods. Valuing both, she shows that, far from being alternatives, the two ideals are compatible to a much greater degree than has previously been thought. Liberal Equality restores egalitarianism to political theory in a way that will forcefully challenge its critics to deeper reflection. (shrink)

Moral disagreement about public policies—issues such as abortion, affirmative action, and health care—is a prominent feature of contemporary American democracy. Yet it is not a central concern of the leading theories of democracy. The two dominant democratic approaches in our time—procedural democracy and constitutional democracy—fail to offer adequate responses to the problem of moral disagreement. Both suggest some elements that are necessary in any adequate response, but neither one alone nor both together are sufficient. We argue here that an adequate (...) conception of democracy must make moral deliberation an essential part of the political process. What we call “deliberative democracy” adds an important dimension to the theory and practice of politics that the leading conceptions of democracy neglect. (shrink)

The Presidential Commission for the Study of Bioethical Issues released its first report, New Directions: The Ethics of Synthetic Biology and Emerging Technologies, on December 16, 2010.1 President Barack Obama had requested this report following the announcement last year that the J. Craig Venter Institute had created the world’s first self-replicating bacterial cell with a completely synthetic genome. The Venter group’s announcement marked a significant scientific milestone in synthetic biology, an emerging field of research that aims to combine the knowledge (...) and methods of biology, engineering, and related disciplines in the design of chemically synthesized DNA to create organisms with novel or enhanced .. (shrink)

Information: a universal metaphor in natural and cultural sciences? Content Type Journal Article DOI 10.1007/s10202-008-0046-2 Authors Michael Bölker, Philipps-Universität Marburg Fachbereich 17: Biologie Karl-von-Frisch-Straße 8 35032 Marburg Germany Mathias Gutmann, Philipps-Universität Marburg Institut für Philosophie Wilhelm Röpke Str. 6B 35032 Marburg Germany Wolfgang Hesse, Philipps-Universität Marburg Fachbereich 12: Mathematik und Informatik Hans-Meerwein-Straße 35032 Marburg Germany Journal Poiesis & Praxis: International Journal of Technology Assessment and Ethics of Science Online ISSN 1615-6617 Print ISSN 1615-6609 Journal Volume Volume 5 Journal Issue Volume (...) 5, Numbers 3-4. (shrink)

Genetic testing has led to the establishment of the concept of the “previvor”: someone who is not yet sick, but who has a genetic predisposition to disease. The previvor experience demonstrates how the practice of medicine and medical decision making is evolving to render current law and policy increasingly inapplicable to modern medical practice. The introduction of previvorship to the medical landscape raises special issues for the physician-patient relationship and the legal doctrine of informed consent. It challenges some of the (...) most basic assumptions underlying the doctrine, is representative of the doctrine’s declining utility, and is illustrative of the need to transition to a shared decision-making model. Thus, we should begin to envision a legal doctrine that supports a robust shared decision-making approach to address individual preferences and values, the increasing complexity of risk/benefit assessment, and inherent (and sometimes irreducible) uncertainty. Such an approach should emphasize a new, more expansive, and inclusive model of illness. (shrink)

Dealing with the reform of the Transplantation Law, the first issue of the new rubric “Philosophie aktuell” met with strong and lively interest from our readers. Subsequent to this discussion a growing number of reports were published dealing with violations of mandatory rules of conduct in transplantation medicine. Therefore the topic is revisited here from the slightly different vantage point “organ transplantation II: elucidation and confidence”.

In modern pluralist societies, political disagreement often reflects moral disagreement, as citizens with conflicting perspectives on fundamental values debate the laws that govern their public life. Any satisfactory theory of democracy must provide a way of dealing with this moral disagreement. A fundamental problem confronting all democratic theorists is to find a morally justifiable way of making binding collective decisions in the face of continuing moral conflict.

In America today, the problem of achieving racial justice--whether through "color-blind" policies or through affirmative action--provokes more noisy name-calling than fruitful deliberation. In Color Conscious, K. Anthony Appiah and Amy Gutmann, two eminent moral and political philosophers, seek to clear the ground for a discussion of the place of race in politics and in our moral lives. Provocative and insightful, their essays tackle different aspects of the question of racial justice; together they provide a compelling response to our nation's most (...) vexing problem.Appiah begins by establishing the problematic nature of the idea of race. He draws on the scholarly consensus that "race" has no legitimate biological basis, exploring the history of its invention as a social category and showing how the concept has been used to explain differences among groups of people by mistakenly attributing various "essences" to them. Appiah argues that, while people of color may still need to gather together, in the face of racism, under the banner of race, they need also to balance carefully the calls of race against the many other dimensions of individual identity; and he suggests, finally, what this might mean for our political life.Gutmann examines alternative political responses to racial injustice. She argues that American politics cannot be fair to all citizens by being color blind because American society is not color blind. Fairness, not color blindness, is a fundamental principle of justice. Whether policies should be color-conscious, class conscious, or both in particular situations, depends on an open-minded assessment of their fairness. Exploring timely issues of university admissions, corporate hiring, and political representation, Gutmann develops a moral perspective that supports a commitment to constitutional democracy.Appiah and Gutmann write candidly and carefully, presenting many-faceted interpretations of a host of controversial issues. Rather than supplying simple answers to complex questions, they offer to citizens of every color principled starting points for the ongoing national discussions about race. (shrink)

"This collection of essays is the best one-volume introduction to a timely topic: the nature, purposes, moral justifications of (and limitations on) freedom of association in liberal democracies.

A profound problem posed by education for any pluralistic society with democratic aspirations is how to reconcile individual freedom and civic virtue. Children cannot be educated to maximize both individual freedom and civic virtue. Yet reasonable people value and intermittently demand both. We value freedom of speech and press, for example, but want people to refrain from false and socially harmful expression. The various tensions between individual freedom and civic virtue pose a challenge that is simultaneously philosophical and political. How (...) can we resolve the tensions philosophically in light of reasonable political disagreements over the relative value of individual freedom and civic virtue? Instead of giving priority to one value or the other, this essay defends a democratic ideal ofconscious social reproduction, which consists of three principles:nonrepression, nondiscrimination, and democratic deliberation. (shrink)

In the history of genetics, the information-theoretical description of the gene, beginning in the early 1960s, had a significant effect on the concept of the gene. Information is a highly complex metaphor which is applicable in view of the description of substances, processes, and spatio-temporal organisation. Thus, information can be understood as a functional particle of many different language games (some of them belonging to subdisciplines of genetics, as the biochemical language game, some of them belonging to linguistics and informatics). (...) It is this wide covering of different language games that justifies the common description of genes x, y, z as containing information for the phenotypic traits X, Y, Z (or the genome as storage for the information of a whole organism). However, if information is taken as the explanans and phenotypic traits or organisms as the explananda, then a description of the explanandum is of prior importance before the explanans can be characterised. This way of thinking could be useful for future discussions on the strikingly dominant information -metaphor, and the different gene concepts as well. The article illustrates this in two steps. First, a condensed overview on the history of genetics is given, which can be divided into three parts: (1) genetics without genes, (2) genetics with genes, but without information, (3) genetics with genes and information. It is assumed that this provides not only some historical knowledge about the origin of genetics and the introduction of technical terms, but offers at least preliminary insight into the methodological structure of genetic descriptions. In a second step, we redraw Spemann’s disturbation experiments to discuss our thesis that genetic information is not a natural entity, but part of a causality-language game which is secondarily added to the descriptions of interventionalistic practices, viz. experimental approaches. (shrink)

Biodiversity is a term easily applied in different and differing contexts. At first glance it seems to be a biological concept, defined and used in the realm of biological theory, serving for the description of particular aspects of the human and non-human environment. In this sense biodiversity even found its way into the texts of international conventions: “Biological diversity means the variability among living organisms from all sources including, inter alia, terrestrial, marine and other aquatic systems and the ecological complexes (...) of which they are part; this includes diversity within species, between species and of ecosystem.” [Harper and Hawksworth (1995)] But despite this clear and distinct definition, the intension of the term BD seems to be ambiguous. This is true for the single aspects of the definition itself, for example, the discussion over “what is a species?” took place in biology during the last 200 years and it is far from being finished [Claridge et al. (1997) Species]. This discussion asks not only for the “correct” biological definition of the term, but at the same time the methodological status of this term is in question. The result of this situation can be seen in the existence of at least 10–20 different definitions, considering biological as well as methodological aspects [Bachmann (1998) Theor Biosci 117:213–230]. Setting aside the fundamental scientific problems even the application of the term, its parametrisation and finally its relevance for biological theory-building is subject matter of controversies. The same is true for further particles of the definition, e.g. the term “ecosystem”, “complexity”, “gen”, “organisms”, etc. The intensity of the debate contrasts in a peculiar way to the reaction of (non-evolutionary) biologists, insofar as the biological research seems to be untouched by the irritating results of the debate itself. Referring to this strange situation, the aim of our article is a reconsideration of the term “biodiversity”. From an epistemological point of view it can be shown that a definition of biodiversity is possible which does not refer to biological knowledge and know-how—at least in its very first steps. Biodiversity then turns out to be a metaphor for specific aspects of societal organisation, the structuration and reproduction of nature-society relations within societies, and not for biological facts at all. (shrink)

Definition of the problem. Voluntary active euthanasia is, in certain circumstances, morally permissible and should be permitted by law. Autonomous persons may have a fundamental interest in experiencing ”death in dignity” in accordance with their own preferences. This interest is protected by the concept of human dignity assumed by German law. Some prerequisites being met, the moral and legal autonomy right to determine the time and manner of one’s own death includes a right to secure active euthanasia from a willing (...) physician, and a physician’s acceding to the patient’s request be may morally the right thing to do. Arguments and conclusion: Most arguments against the justifiability of voluntary active euthanasia unveil their weakness when scrutinized. However, insofar as legalized voluntary active euthanasia would be subject to intolerable abuse, our policy options are dilemmatic, and the concept of human dignity as it has been taken for granted in German legal discourse, is questioned. There is no option other than seeking safety in legal procedures for every single case. (shrink)

Service-Robotic—mainly defined as “non-industrial robotics”—is identified as the next economical success story to be expected after robots have been ubiquitously implemented into industrial production lines. Under the heading of service-robotic, we found a widespread area of applications reaching from robotics in agriculture and in the public transportation system to service robots applied in private homes. We propose for our interdisciplinary perspective of technology assessment to take the human user/worker as common focus. In some cases, the user/worker is the effective subject (...) acting by means of and in cooperation with a service robot; in other cases, the user/worker might become a pure object of the respective robotic system, for example, as a patient in a hospital. In this paper, we present a comprehensive interdisciplinary framework, which allows us to scrutinize some of the most relevant applications of service robotics; we propose to combine technical, economical, legal, philosophical/ethical, and psychological perspectives in order to design a thorough and comprehensive expert-based technology assessment. This allows us to understand the potentials as well as the limits and even the threats connected with the ongoing and the planned implementation of service robots into human lifeworld—particularly of those technical systems displaying increasing grades of autonomy. (shrink)

The concept of form belongs—apparently—to an older stage of biological concept formation. Paradoxically, it is even the insistence on the reference to form that shows its very disappearance.1 The more the functionalization2, systematization, and finally algorithmization of modern biology3 advances, in the sense of systems biology, synthetic biology and bioinformatics, the less audible the call for a rehabilitation of the concept of form becomes.This technomorphic tendency, to deal with living entities in terms of artifacts, increasingly brought the concept of transformation (...) into the forefront—articulated, e.g., in the formal sense by differential equations and their combination on all “levels” of the biological... (shrink)

Tous les théoriciens de la démocratie ont à confronter le problème fondamental qui consiste à trouver une façon moralement justifiable de prendre des décisions collectives contraignantes face à des désaccords moraux persistants. Une théorie délibérative de la démocratie nous fournit l’approche la mieux défendable de ce problème parce qu’elle laisse ouverte la possibilité que les valeurs morales exprimées par un large éventail de théories puissent être justifiables. Le principe fondamental de notre théorie délibérative est que les citoyens doivent se justifier (...) réciproquement les lois qu’ils s’imposent mutuellement. Les citoyens ou leurs représentants offrent des raisons les uns aux autres dans un processus permanent de justification mutuelle. Les principes qui guident ce processus sont provisoires moralement et politiquement et permettent donc la persistance du désaccord moral à propos de lois, de politiques et d’institutions tout en ouvrant la possibilité de l’accord moral sur les lois, politiques et institutions qui sont mutuellement justifiables.All democratic theorists confront the fundamental problem of finding a morally justifiable way of making binding collective decisions in the face of continuing moral disagreement. A deliberative theory of democracy provides the most defensible approach to this problem because it leaves open the possibility that the moral values expressed by a wide range of theories may be justifiable. The fundamental principle of our deliberative theory is that citizens owe one another justifications for the laws they collectively impose on one another. Citizens or their accountable representatives offer reasons to one another in an ongoing process of mutual justification. The principles that guide this process are morally and politically provisional, and thus allow for the persistence of moral disagreement about laws, policies, and institutions, and at the same time for the possibility of moral agreement about those that are mutually justifiable. (shrink)

This article addresses contentious questions concerning individual freedom and democratic citizenship education in the contemporary circumstances of multiculturalism. It suggests that educating children for civic equality is an ambitious aim for any democracy and not one that can ever be realized once and for all. It provides evidence that multicultural conditions can challenge the very aim of educating children for civic equality. It explains that democracies are variously multicultural and the varieties of groups make a difference in the kind of (...) education and the progress toward civic equality that can realistically be expected at any time. (shrink)

The determination of specific limitations of biological descriptions, explanations and structuralisations presupposes a proper understanding of the methodical status of “function”. This is particularly relevant if biological knowledge is supposed to play a crucial argumentative role even beyond the limits of the empirical science. In such cases it is not easily determinable at which point purely empirical knowledge enters into the argument and where additional methodical and methodological aspects must be considered. This paper provides a methodological reconstruction of the functional (...) form of biological knowledge itself, which is unfolded in three consecutive steps. The reconstruction starts with the determination of model-theoretical prerequisites of functional structuralisation of biotic entities as organisms. The second step explicates the logical grammar of functional and dysfunctional characters. Based upon this reconstruction, the systematic relation between the form of functional and evolutionary arguments is reconsidered. Finally some of the argumentative burdens are developed, which result from the use of biological language- and theory-particles being applied beyond the scope of validity that is and can be claimed for their proper use within their original life-scientific language game. (shrink)

Abstraction and Ideation - The Semantics of chemical and biological fundamental concepts. The methods of abstraction and ideation are indispensable tools to introduce new concepts in a scientific terminology. The latter is paradigmatically introduced within the 'protophysical program' whereas abstraction is commonly applied in logics and mathematics. The application within the reconstruction of chemistry and biology causes several problems. Ideation appears to be inadequate whereas the application of abstraction necessitates a critical and minute examination of the corresponding equivalence relations. These (...) problems are solved by the introduction of the method of materially-synthetic (material-synthetische) abstraction which is exemplified by the introduction of the chemical concept of 'substance' (Stoff) and the biological concept of 'hereditary factor' (Erbanlage). (shrink)

This chapter contains sections titled: The Family State The State of Families The State of Individuals Democratic Education Conclusion: Civic Minimalism and Multiculturalism.

An article by Melissa Gymrek and colleagues, published this January in Science, described how the researchers used surname inferences from commercial genealogy databases and Internet searches to deduce the identity of nearly fifty research participants whose supposedly private data were stored in large, publicly available datasets. This news comes just months after the Presidential Commission for the Study of Bioethical Issues published a report that expressed serious concerns about personal privacy and security in whole genome sequencing. The bioethics commission (on (...) which we serve as chair and vice‐chair) highlighted the importance of reconciling the enormous public benefits anticipated from research in this area with the potential risks to individuals’ privacy, and it offered several policy proposals to help balance the potential of scientific progress with privacy and respect for persons. The human subjects research protections laid out in the federal regulations are triggered by the identifiability of data. The participants in the Gymrek et al. study were not “readily identifiable”; however, the data proved far more easily identifiable than expected. With rapidly evolving technology, a precise definition of that notion may be impossible. But if we move the debate from the rhetoric of identifiability to the ethical principles of public beneficence and the centrality of respecting all persons, we find that the real ethical focus must be on promoting generalizable progress while at all times respecting individual privacy. (shrink)