Loi recently proposed a libertarian right to direct to consumer genetic testing — independent of autonomy or utility—reflecting Cohen’s work on self-ownership and Hohfeld’s model of jural relations. Cohen’s model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal (...) physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include ‘conflict with other people’s rights’, ‘aggressive’ use of the genome and ‘harming others’. Harms potentially experienced by relatives as a result of the individual’s exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving ‘aggressive’ use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders. (shrink)

We appreciate the opportunity to present some further thoughts on the libertarian right to test initially proposed by Loi, and hope these additional comments will further inform debate about this critical emerging technology. Loi’s important argument is that individuals possess a prima facie libertarian right to test their genomes and that regulatory intervention restricting genetic testing must be justified by those proposing regulation. Our position is that the onus of justifying regulation is reversed. The risk to others whose genomic information (...) is shared with the individual is potentially significant enough to warrant prima facie regulatory intervention, including protection against misuse of genetic information derived from those tests, not just against the individual tested but also against those who for reasons of common familial ancestry are also susceptible to misuse. Testing an individual’s genome does not merely reveal information about that individual; it reveals, or renders reasonably inferable, information about the genomes of close relatives due to the commonality of genomic DNA within families. Such commonality is not merely ‘incidentally identical’: it is instead inevitable given the shared nature of genomic DNA sequences within families. ‘Incidental identity’ may appropriately describe the statistical possibility of two unrelated individuals in the human …. (shrink)

For many tribes of Plains Indians whose bison-hunting culture flourished during the 18th and 19th centuries, the sun dance was the major communal religious ceremony. Generally held in late spring or early summer, the rite celebrates renewal-the spiritual rebirth of participants and their relatives as well as the regeneration of the living earth with all its components. The sun dance reflects relationships with nature that are characteristic of the Plains ethos, and includes symbolic representations of various animal species, particularly the (...) eagle and the buffalo, that once played vital roles in the lives of the people and are still endowed with sacredness and special powers. The ritual, involving sacrifice and supplication to insure harmony between all living beings, continues to be practiced by many contemporary native Americans. (shrink)

In accordance with ethical principles and standards, researchers conducting studies with children are expected to seek assent and respect their dissent from participation. Little attention has been given to assent and dissent in research with toddlers, who have limited cognitive and emotional capabilities. We discuss research with toddlers in the context of assent and dissent and propose guidelines to ensure that research with toddlers still adheres to ethical principles. These guidelines include designing engaging studies, monitoring refusal and distress, and partnering (...) with parents. Research with toddlers requires flexibility and creativity to respect toddlers in the context of their developmental capabilities. (shrink)

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

The network approach proposed by Cramer et al. suggests fascinating new directions of research on mental disorders. Research is needed to find evidence for the causal power of symptoms, to examine symptoms thoroughly, to investigate individual differences in edge strength, to discover etiological processes for each symptom, and to determine whether and why symptoms cohere into distinct mental disorders.

In lieu of an abstract, here is a brief excerpt of the content:In Their Father’s Library: Books Furnish Not Only a Room, But Also a Tradition ELIZABETH POWERS Although they shared close life dates and became famous in the same years for their epistolary novels, Johann Wolfgang von Goethe (1749–1832) and Fanny Burney (1752–1840) would seem to have been worlds apart literarily. (Goethe had in his Weimar library a copy of Evelina, while Burney was probably not ignorant of the (...) Europe-wide sensation The Sorrows ofYoung Werther.) What might be called their literary apprenticeship, however, was remarkably similar, consisting not of schooling in a traditional institution in which students (and, importantly, most eighteenth-century writers) were drilled in the classical curriculum, but, instead, from wide reading within the confines of their fathers’ libraries. It is true that Goethe and his younger sister Cornelia were supplied at home with a number of tutors and that their progress was monitored by their father, but their acquaintance with literature was fostered within the confines of the family home. Burney had no formal education at all. Indeed, on the appearance of Evelina, her father (according to her diary) remarked : “[S]he has had very little Education but what she has given herself,—less than any of the others!” Burney, however, had the advantage of growing up in a milieu in which books mattered. While the Goethes were eminently respectable, on the mother’s side part of what was the patriciate of the city of Frankfurt, the Burney household in London was bursting with wits and with what can only be called celebrities. The Burneys knew God and the world: David Garrick, Dr. Johnarion 28.1 spring/summer 2020 116 in their father’s library son, Hester Thrale. As Virginia Woolf noted of the famous father, Dr. Charles Burney, he was a musician “who could talk of intellectual things and ask clever people to his house.” Goethe has given plenty of evidence of roaming freely among his father’s books, a collection of 1,700 calfskin-bound volumes. When Burney went to serve at the court of King George III, Queen Charlotte was disappointed at how few books the author of Evelina possessed. (Similarities accumulate: Goethe also served at court, as minister in the duchy of Weimar.) But why cart around a load of books? As Burney wrote in her diary: “[M]y Father’s most delightful Library, as I then told her [the Queen], with my free access to it, had made [owning my own books] a thing unnecessary... ” Libraries in the eighteenth and early nineteenth century, whether private or public affairs, were not like contemporary public libraries, catering to a wide array of tastes, but were repositories of what Matthew Arnold termed “the best that is known and thought in the world.” Let’s call it the Western intellectual and cultural heritage. Most respectable homes would possess at a minimum a Bible, while the holdings in private homes, as evident in the library of Goethe’s father, could reach astounding proportions. According to Burney biographer Claire Harman, Fanny’s brother left at his death one of the finest private libraries of the age. Moreover, the antiquity of the works in the venerable libraries scattered across Europe from Dublin to Saint Petersburg, and especially their survival despite centuries of vicissitudes, was testimony to the authoritative nature of the transmission. Anyone who took the Bible in hand, who took lessons from it, adhering, for instance, to the injunctions of the Ten Commandments, was conscious of subscribing to values shared by preceding generations. Literary practitioners, also showing obeisance to authoritative predecessors, followed earlier models, in the process contributing to an evolving literary heritage. There was no purity in this transmission. It was truly promiscuous, but its quasi-biological character, like a mother’s left-handedness in a child, can be seen in the family Elizabeth Powers 117 resemblances among writers of different eras. Just as individuals perpetuate traits of their parents, so literature and the other arts recycled features of artistic predecessors. Writers as diverse in background and language and religion as Ariosto and Milton transmitted the dna, so to speak, of such epical forebears as Homer and Virgil. This sort of family legitimacy was... (shrink)

Biologists, historians, lawyers, art historians, and literary critics all voice arguments in the critical dialogue about what constitutes evidence in research and scholarship. They examine not only the constitution and "blurring" of disciplinary boundaries, but also the configuration of the fact-evidence distinctions made in different disciplines and historical moments the relative function of such concepts as "self-evidence," "experience," "test," "testimony," and "textuality" in varied academic discourses and the way "rules of evidence" are themselves products of historical developments. The essays and (...) rejoinders are by Terry Castle, Lorraine Daston, Carlo Ginzburg, Ian Hacking, Mark Kelman, R. C. Lewontin, Pierre Vidal-Naquet, Mary Poovey, Donald Preziosi, Simon Schaffer, Joan W. Scott, Eve Kosofsky Sedgwick, and Barbara Herrnstein Smith. The critical responses are by Lauren Berlant, James Chandler, Jean Comaroff, Arnold I. Davidson, Harry D. harootunian, Elizabeth Helsinger, Thomas C. Holt, Francoise Meltzer, Robert J. Richards, Lawrence Rothfield, Joel Snyder, Cass R. Sunstein, and William Wimsatt. (shrink)

Commercialization of medicine is a growing trend that threatens to undermine physicians’ commitments to patient care in favor of personal financial interests. Bemoaned by Arnold Relman as early as 1980, growing for-profit sectors of health care have been reshaping medicine from a profession into a business, forming the foundation of what he terms a “medical-industrial complex” that threatens to undermine professional identity and reshape health care funding. Commercialization poses new ethical challenges for health care providers who have a financial (...) stake in their health care decisions and may undermine their fiduciary duties to patients.Certainly, commercialization has brought about new trends in medicine — one need only to look as far as the rise in for-profit hospitals, diagnostic laboratories, and proprietary nursing homes to see how opportunities for financial gain reposition physicians’ orientations vis-à-vis patients. (shrink)

Frederick Denison Maurice.--Matthew Arnold.--Charles Bradlaugh.--Thomas Henry Huxley.--Leslie Stephen.--Harriet Martineau.--Charles Kingsley.

If the world itself is metaphysically indeterminate in a specified respect, what follows? In this paper, we develop a theory of metaphysical indeterminacy answering this question.

Radical moral encroachment is the view that belief itself is morally evaluable, and that some moral properties of belief itself make a difference to epistemic rationality. To date, almost all proponents of radical moral encroachment hold to an asymmetry thesis: the moral encroaches on rational belief, but not on rational credence. In this paper, we argue against the asymmetry thesis; we show that, insofar as one accepts the most prominent arguments for radical moral encroachment on belief, one should likewise accept (...) radical moral encroachment on credence. We outline and reject potential attempts to establish a basis for asymmetry between the attitude types. Then, we explore the merits and demerits of the two available responses to our symmetry claim: (i) embracing moral encroachment on credence and (ii) denying moral encroachment on belief. (shrink)

Focuses on the encounters of feminist and queer theories, on the ways in which basic terms such as - sex, gender, and sexuality change meaning as they move from one body of theory to another. This book includes essays by Judith Butler, Evelynn Hammonds, Biddy Martin, Kim Michasiw, Carole-Anne Tyler, and Elizabeth Weed.

Dieses Buch ist ein Klassiker der philosophischen Anthropologie und Arnold Gehlens wichtigstes Buch. Es fasst Gehlens Modell vom Menschen als eines auf Handlung und kulturelle Kompensation angewiesenen und sich damit eigentatig von der ihn bedrohenden Umwelt entlastenden "Mangelwesens" gultig zusammen. Auch wurde in "Der Mensch" 1950 erstmals Gehlens Institutionenlehre skizziert, die er aus der Revision seiner ursprunglichen Theorie "oberster Fuhrungssysteme" entwickelte. Gehlens Hauptwerk war "ohne Zweifel der fortgeschrittenste Versuch, die Philosophische Anthropologie an die Erkenntnisse empirischer Disziplinen zu binden". Diese (...) Ausgabe bringt die textkritische Edition der Kritischen Gesamtausgabe mit dem Text der 4. Auflage von 1950, der die letzte tiefgreifende Umarbeitung darstellt, die Gehlen an dem erstmals 1940 erschienenen Text vornahm. (shrink)

Introduction: human rights in healthcare -- A right to treatment? the allocation of resouces in the National Health Service -- Ensuring quality healthcare: an issue of rights or duties? -- Autonomy and consent in medical treatment -- Treating incompetent patients: beneficence, welfare and rights -- Medical confidentiality and the right to privacy -- Property right in the body -- Medically assisted conception and a right to reproduce? -- Termination of pregnancy: a conflict of rights -- Pregnancy and freedom of choice (...) -- The right to life at the end of life -- The law and ethics of assisted dying: is there a right to die? (shrink)

It has recently been reported that some hospitals in the UK have placed a blanket restriction on the provision of maternal request caesarean sections as a result of the COVID-19 pandemic. Pregnancy and birthing services are obviously facing challenges during the current emergency, but we argue that a blanket ban on MRCS is both inappropriate and disproportionate. In this paper, we highlight the importance of MRCS for pregnant people’s health and autonomy in childbirth and argue that this remains crucial during (...) the current emergency. We consider some potential arguments—based on pregnant people’s health and resource allocation—that might be considered justification for the limitation of such services. We demonstrate, however, that these arguments are not as persuasive as they might appear because there is limited evidence to indicate either that provision of MRCS is always dangerous for pregnant people in the circumstances or would be a substantial burden on a hospital’s ability to respond to the pandemic. Furthermore, we argue that even if MRCS was not a service that hospitals are equipped to offer to all pregnant persons who seek it, the current circumstances cannot justify a blanket ban on an important service and due attention must be paid to individual circumstances. (shrink)

On a rainy day in May 1988, a lowland gorilla named Willie B. stepped outdoors for the first time in twenty-seven years, into a new landscape immersion exhibit. Born in Africa, Willie B. had been captured by an animal collector and sold to a zoo. During the decades he spent in a cage, zoos stopped collecting animals from the wild and Americans changed the ways they wished to view animals in the zoo. Zoos developed new displays to simulate landscapes like (...) the Amazon River basin and African forests. Exhibits similar to animals' natural habitats began to replace old-fashioned animal houses. But such displays are only the most recent effort of zoos to present their audiences with an authentic experience of nature. Since the first zoological park opened in the United States in Philadelphia in 1874, zoos have promised their visitors a journey into the natural world. And for more than a century they have been popular places for education and recreation: every year more than 130 million Americans go to zoos to look at the animals and enjoy a day outdoors. The first book-length history of American zoos, Animal Attractions examines the meaning of nature in the city by looking at the ways zoos have assembled and displayed their animal collections. Situated literally and culturally in the American middle landscape, zoos are concrete expressions of longstanding tensions between wildness and civilization, science and popular culture, education and entertainment. In their efforts to promote nature appreciation, they reveal much about how our culture envisions the natural world and the human place in it and how these ideas have changed. (shrink)

Auch seine letzte Monographie Moral und Hypermoral sah Gehlen in der direkten Nachfolge seines anthropologischen Hauptwerkes Der Mensch. Insofern verstand er seinen Entwurf einer pluralistischen Ethik als Konkretisierung seiner Lehre vom Menschen. In diesem Buch, das eine Genealogie der Moralen entwickeln will, stellte sich Gehlen die Aufgabe, Anthropologie, Verhaltensforschung und Soziologie so zu verbinden, dass vier voneinander nicht ableitbare Ethosformen empirisch freigelegt werden konnten: von einem aus der aGegenseitigkeit entwickelten Ethos uber Eudaimonismus und Humanitarismus bis hin zu einem Ethos der (...) Institutionen einschliesslich des Staates. Gehlen wollte der abstrakten Ethik der Aufklarung widersprechen, wie sie beispielsweise in Voltaires Diktum zum Ausdruck kam, nach welchem es nur eine Moral gebe, so wie es nur eine Geometrie gibt. Systematisch geht es in erster Linie um eine anthropologische Begrundung der Ethik, d.h. um eine Mehrheit moralischer Instanzen und Sozial-Regulationen. Diese werden nicht evolutionar interpretiert, d.h. als Fortschritt von der Nahethik zu einer schliesslich weltumspannenden Moralitat. Manche Moralen konnen als instinktnah angenommen werden, andere ergeben sich aus den Notwendigkeiten bestimmter Institutionen. Immer jedoch sind sie kulturell geformt und zugleich auf unterschiedlichen Ebenen der Abstraktion angesiedelt. Es bleibt im Zuge einer neuerlichen Rezeption von Moral und Hypermoral die These zu prufen, ob die Modellvorstellung eines unversohnlichen Pluralismus moralischer Normen eine Dimension des Ethischen zum Ausdruck bringt, die in den evolutiven Konzepten der ethischen Anpassung an je hohere gesellschaftliche Synthesen unterschatzt wird. Insofern gehort dieses Buch in den Zusammenhang einer philosophisch-soziologischen Grundlagenforschung, wie sie seit Max Scheler und Helmuth Plessner als Philosophische Anthropologie durchgefuhrt wurde und welche Arnold Gehlen - von den Elementarbestanden der menschlichen Existenz bis zur Analyse der modernen Malerei - mit so viel Sachhaltigkeit weiterverfolgt hat. (shrink)

In this book, Arnold Davidson elaborates a method for considering the history of concepts and the nature of scientific knowledge, a method he calls "historical epistemology." He applies this to the history of sexuality, with consequences for our understanding of desire, abnormality, and sexuality.

Most people will agree that if my brain were made to have within it precisely the same pattern of activity that is in it now but through artificial means, as in its being fed all its stimulation through electrodes as it sits in a vat, an experience would result for me that would be subjectively indistinguishable from that I am now having. In ‘The Story of a Brain’ I ask whether the same subjective experience would be maintained in variations like (...) these: The hemispheres are in different vats but interacting with each other through radio transmission. Smaller chunks - and eventually the individual neurons - are interacting in this way. The hemispheres or the smaller chunks undergo internally the same pattern of activity but without interacting with each other. (shrink)

From social media to search engines to Wikipedia, the internet is thoroughly embedded in how we produce, locate, and share knowledge around the world. Who Should We Be Online? provides an account of online knowledge that takes seriously the role of sexist, racist, transphobic, colonial, and capitalist forms of oppression. Frost-Arnold argues against analyzing internet users as a collection of identical generic people with smartphones. The novel epistemology developed in this book recognizes that we are differently embodied beings interacting (...) within systems of dominance. Our social identities and global inequalities shape who we are, who we can be online, and what we know. Tackling problems of online content moderation, fake news, and hoaxes, Frost-Arnold shows that oppressive online structures and practices help fuel ignorance. But she also reveals how the internet provides opportunities for marginalized people and activists to share knowledge online. Drawing on feminist accounts of objectivity, veritistic social epistemology, epistemologies of ignorance, virtue epistemology, and the epistemic injustice literature, this book argues for a social epistemology that values truth and objectivity, while recognizing that inequalities shape our collective ability to attain these goals. Timely and interdisciplinary, Who Should We Be Online? weaves together internet studies scholarship from across the humanities, social sciences, and computer science. Presenting case studies of moderators, imposters, tricksters, fakers, and lurkers, this book both explains the problems with our current internet ecosystem and imagines liberatory online futures. (shrink)

This article examines the barriers to quality health care for transgender, nonbinary, and gender-expansive people (TGE) who become pregnant and give birth, identifying three central themes that emerge from the literature. These insights suggest that significant reform will be necessary to ensure access to safe, appropriate, gender-affirming care for childbearing TGE people. After illustrating the need for systemic changes that untether rigid gender norms from the provision of perinatal care, the article proposes that the Midwives Model of Care offers a (...) set of values and clinical practices that are well-suited to meet the needs of many TGE patients during pregnancy and childbirth and which should be incorporated into the healthcare system more broadly. (shrink)

I critically examine Nietzsche’s argument in The Will to Power that all the detailed events of the world are repeating infinite times (on account of the merely finite possible arrangements of forces that constitute the world and the inevitability with which any arrangement of force must bring about its successors). Nietzsche celebrated this recurrence because of the power of belief in it to bring about a revaluation of values focused wholly on the value of one’s endlessly repeating life. Belief in (...) recurrence would bring joy to those who had achieved excellence in this life and crush those who had not. I point out, however, that this significance of recurrence must be spoiled by the consideration that within each of the long cycles of recurrence there would have to be, as well, countless variations of this life. And I consider the issue of personal identity within such recurrences. Is it the same person or merely resembling but distinct persons in the recurrences or the variations? If it is the same person in precise recurrences, should the subjectively identical experience be thought of as really additional for that person? (shrink)

Experience with electronic communication in ethics committees at two hospitals is reviewed and discussed. A listserver of ethics committee members transmitted a synopsis of the ethics consultation shortly after the consultation was initiated. Committee comments were sometimes incorporated into the recommendations. This input proved to be most useful in unusual cases where additional, diverse inputs were informative. Efforts to ensure confidentiality are vital to this approach. They include not naming the patient in the e-mail, requiring a password for access to (...) the listserver, and possibly encryption. How this electronic communication process alters group interactions in ethics committees is a fruitful area for future investigation. (shrink)

Public health agencies regularly survey randomly selected anonymous students to track drug use, sexual activities, and other risk behaviors. Students are unidentifiable, but a recent project that i...

Classical Soviet Marxism-Leninism is in the process of dissolution, with some parts of the ideology being rejected, others retained in one form or another, and new components being adopted. At the same time, a wide-ranging pluralism of new objectives and forms of consciousness has emerged in Soviet intellectual life. Since both the motives for restructuring and also the braking effects acting on the process of perestrojka are significantly dependent upon intellectual and ideological developments, attentive observations of these developments is of (...) particular importance for the assessment of the evolutionary propects of the Soviet Union. At present the situation on the ideological-intellectual front can be characterized as follows: 1. Although official changes in the ideology did not begin until 1989 they have caught up to the initial perestrojka in political and cultural life. 2. Perestrojka has continually waned in importance as an ideological by-word largely under the influence of Gorbachv's 'new thinking' which has turned attention to the dramatic history of the Soviet Union and the plight of the human individual in a society with few prospects for the future. 3. In philosophy the new textbook published in 1989/90 introduces a series of crucial innovations that put paid to a number of classical shibboleths of the Marxist-Leninist world view. 4. Academic philosophy has shifted more and more to a reexamination of the history of philosophy as well as to a reappraisal of pre-revolutionary Russian thought. 5. The critique of Stalinism has gradually given way to a critique of Marxist principles generally, and even Lenin has become the subject of criticism. 6. Fast on the heels of the new thinking and the ideological deconstruction come the voices of political orientations whose differences are so pronounced as to have warranted the compilation of an 'Atlas of ideologies'. 7. The search for a new moral identity has concentrated on three sources: the reestablishment of links with classical Russian culture, the renewal of links with Europe, and the deep-seated need to commit oneself to some ideal for sacrifice. 8. The economic crisis has produced attitudes hostile to individual gain and speculation. 9. Given the nature of the Soviet crisis intellectual cooperation with the West has to take forms which promote the rekindling of a sense of all-human awareness of the transcendent and reinforce the experience of common humanity. 10. The establishment of all-European academic institutions designed in their very structure to engage in mutual cooperation could have a catalytic effect on the reconfiguration of Europe. (shrink)