Definition of the problem: Preimplantation genetic diagnosis (PGD) is a new technique to test the in-vitro embryo for genetic disorders. Currently in Germany a debate arises whether the use of PGD is ethically acceptable. Many authors emphasize that PGD might lead us on a slippery slope towards the killing of persons, the creation of designer babies or the discrimination of disabled.

Nach langer Krankheit starb Friedrich Nietzsche im Alter von 55 Jahren. Dieser Bericht gibt einen detaillierten chronologischen Überblick über die Symptome und Zeichen seiner Krankheit, die bereits im Kindesalter begann. Es wird ausfürlich diskutiert, dass Nietzsches Multisystemerkrankung alle Kriterien für die Diagnose eines MELAS-Syndroms erfüllt. Diese genetische Erkrankung wird ausschleßlich von der Mutter vererbt. Die Diagnose Neurosyphilis, die im Jahre 1889 in Basel und in Jena gestellt wurde, war wahrscheinlich ein typischer Irrtum der Zeit. After prolonged illness, Friedrich Nietzsche died (...) at the age of 55 in Weimar/Germany. This article gives a detailed overview of the signs and symptoms that started already in Nietzsche's childhood. It is discussed that Nietzsche's multisymptom disease meets all criteria for the diagnosis of MELAS syndrome, a genetic disorder inherited by his mother. The diagnosis of general paralysis of the insane that was made on his admission in Basel and Jena ind 1889 was most likely a typical medical error of the time. (shrink)

This book uses insights from disability studies to understand in a deeper way the ethical implications that genetic technologies pose for Christian thought. Theologians have been debating genetic engineering for decades, but what has been missing from many theological debates is a deep concern for persons with genetic disabilities. In this ambitious and stimulating book, Devan Stahl argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate both genetic science and (...) the moral use of genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Using theological notions of creation ex nihilo and natural law alongside insights from disability studies, the book seeks to recast the debate concerning genetic well-being. Following the work of Stanley Hauerwas, Stahl proposes the church as the locus for reimagining disability in a way that will significantly influence the debates concerning genetic therapies. Stahl's project in "genethics" proceeds with an acute awareness of her own liberal Protestant tradition's early embrace of the eugenics movement in the name of scientific and medical advancement, and it constructively engages the Catholic tradition's metaphysical approach to questions in bioethics to surpass limitations to Protestant thinking on natural law. Christianity has all too frequently been complicit in excluding, degrading, and marginalizing people with disabilities, but the new Christian metaphysics developed here by way of disability perspectives provides normative, theological guidance on the use of genetic technologies today. As Stahl shows in her study, only by heeding the voices of people with disabilities can Christians remain faithful to the call to find Christ in "the least of these" and from there draw close to God. This book will be of interest to scholars in Christian ethics, bioethics, moral theology, and practical theology. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The 2007 Meeting of the Society for Buddhist-Christian StudiesSan Diego, California, November 16–17, 2007Peter A. HuffThe Society for Buddhist-Christian Studies sponsored two sessions in conjunction with the 2007 annual meeting of the American Academy of Religion (AAR). Each session highlighted themes related to the work of a major figure in Buddhist-Christian dialogue. The first session, addressing the topic “Homosexuality, the Church, and the Sangha,” was organized in honor of (...) Roger Corless (1938–2007), longtime member of the society, dual practitioner of Roman Catholicism and Vajrayana Buddhism, and a well-known voice for “queer sangha.” The second session, a panel discussion titled “The Thought and Legacy of Masao Abe,” focused on the career achievements of Abe (1915–2006), widely acknowledged as one of the most innovative and influential scholars in modern Zen studies, interreligious dialogue, and comparative philosophy.The first session, moderated by Harry Wells (Humboldt State University), featured three papers on issues of gender, sexual ethics, and religious identity. Robert Fastiggi, professor of systematic theology at Sacred Heart Major Seminary (Detroit), presented the paper “The Catholic Church and Homosexuality.” Arguing that the Catholic tradition avoids an “either/or” approach to homosexuality, he outlined the church’s official distinction between morally neutral homoerotic identity and what Vatican documents call “intrinsically disordered” homosexual acts. He also noted that Catholic researchers differ significantly on the question of the genetic origins of same-sex attraction. The key to Catholic moral teaching on homosexuality, he explained, is a “theology of the body” that envisions male-female complementarity as the divinely ordained pattern of creation. Fastiggi suggested that further discussion of related ideas such as celibacy, chastity, desire, and concupiscence would enhance future Buddhist-Christian dialogue on homosexuality.Ilene Stanford, a ThD candidate in religion, gender, and culture at Harvard University, presented the next paper, “In or Out? Marriage as a Social Practice.” Describing marriage in the United States as a “site of contestation,” she explored the conflicting [End Page 137] models of sexual union that currently inform public debates in political and ecclesiastical contexts. Using William Johnson’s A Time to Embrace: Same-Gender Relationships in Religion, Law, and Politics (2006) as a point of departure, she argued that many contemporary examinations of sexual relationships, even some of the most inclusive, fail to reckon with the way in which the West’s Augustinian legacy continues to make heterosexual marriage the norm for all moral reflection on sexual identity and expression. The escalating controversy in the international Anglican community, she said, exposes the weaknesses of Johnson’s “deliberative democracy” model and other theoretical models that minimize the role of political and social power in the construction of sexual ideals.José Ignacio Cabezón, who holds the XIV Dalai Lama Chair in Tibetan Buddhism at the University of California, Santa Barbara, presented the final paper: “Is Homosexual Sex ‘Sexual Misconduct’? Critical Reflections on Some Classical Indo-Tibetan Sources.” Analyzing the changing portraits of sexual immorality in the Pali canon, Indian Sanskrit texts, and Tibetan scholastic treatises, Cabezón traced the evolution of monastic commentary on lay sexuality over the course of several centuries. What originated primarily as a simple prohibition against some forms of male adulterous activity, he explained, eventually became an unprecedented attempt to regulate intricate details of sexual behavior. Identifying Ansanga (fourth century ce) as the first Buddhist writer to proscribe same-sex activity between men, Cabezón suggested that changing social mores, intra-Buddhist debates, and the fertile monastic imagination contributed to the gradual elaboration of moral teaching in ancient and classical Buddhist literature.After the paper presentations, Richard Reilly, professor of philosophy at St. Bonaventure University, responded with provocative comments. He raised critical points about the significance of the distinction between sexual acts and erotic relationships, the strategic though limited value of “deliberative democracy” in multicultural faith communities, and the need for more rigorous comparative study of homophobic legislation in Buddhist and Abrahamic religious traditions. Sparking an engaging discussion among presenters and members of the audience, Reilly’s remarks underscored the importance of ongoing interdisciplinary investigations into homosexuality, the church, and the sangha.The society’s second session at the AAR provided a venue for former... (shrink)

Recombinant DNA technology will soon allow physicians an opportunity to carry out both somatic cell- and Germ-Line gene therapy. While somatic cell gene therapy raises no new ethical problems, gene therapy of gametes, fertilized eggs or early embryos does raise several novel concerns. The first issue discussed here relates to making a distinction between negative and positive eugenics; the second issue deals with the evolutionary consequences of lost genetic diversity. In distinguishing between positive and negative eugenics, the concept of (...) malady is applied as a definitional criterion for identifying genetic disorders that could qualify for Germ-Line therapy. Because gene replacement techniques are currently unavailable for humans, and because even if they were possible the number of people involved would be quite small, the loss of diversity concern seems moot. Finally, we dissuss the issue of iatrogenic disorders associated with gene therapy and discuss several ‘real world considerations.’. (shrink)

John C. Fletcher, a pioneer in the field of bioethics and friend and mentor to many generations of bioethicists, died tragically on May 27th at the age of 72. The son of an Episcopal priest from Bryan, TX, Fletcher graduated in 1953 with a degree in English Literature from the University of the South in Sewanee, TN. After completing a Masters in Divinity degree from the Virginia Theological Seminary and a stint as a Fulbright scholar at the University of Heidelberg (...) in 1956, he was ordained in the Episcopal Church and received a doctorate in Christian ethics from the Union Theological Seminary in New York. After ordination, Fletcher worked in various Episcopal churches and founded the Interfaith Metropolitan Theological Seminary in Washington, D.C. However, despite his religious faith, he was also a skeptic, and renounced his ordination in the mid-1990s due to his need for ?intellectual honesty.? Fletcher began his bioethics contributions in the early 1970's, when he became a founding Fellow of the Hastings Center and eventually the first Chief of the Bioethics Program at the Clinical Center of the National Institutes of Health. At the University of Virginia in Charlottesville, he was the Founding Director of the Center for Bioethics and a professor of biomedical ethics at the medical school, and became the Kornfeld Professor of Biomedical Ethics until his retirement in 1999. Fletcher was a prominent authority and voice in the national and international bioethical dialogue through his talks, his testimonies before scientific and congressional panels, his many articles, and his bioethical and religiously-orientated books, including: An Introduction to Clinical Ethics (1997), Coping with Genetic Disorders: a Guide for Clergy and Parents (1982), Ethics and Human Genetics: A Cross-Cultural Perspective (1989), which he wrote with sociologist Dorothy C. Wertz. Dr. Fletcher received the Lifetime Achievement Award from the American Society of Bioethics and Humanities in 2000. With the passing of Dr. John C. Fletcher, bioethics has lost one of its great voices, a dedicated teacher and mentor, and a friend and colleague to scholars in bioethics and a host of other fields. Below is a touching tribute from one of his former students. (shrink)

The author draws on his own experience of helping to make and deliver public policy to indicate the wider context in which ethical decisions have to be made: the law, contested interpretations of the law which have to be settled in the courts, and wider political and economic factors. He argues that the concept of respect for the early embryo does have substance because of the strict regulatory regime of the Human Fertilisation and Embryology Authority (HFEA). He considers the arguments (...) that the early embryo ‘[e]njoys the full rights of the human being and should be accorded respect owed to a human being’. He concludes that these arguments are not finally convincing. He also looks at the moral status of the early embryo in Christian tradition and argues that perhaps from the fourth and certainly from the seventh century in the West until 1869, offences against the early embryo were regarded as less serious than offences against the embryo when developed further. For these reasons he concludes that there should be no absolute prohibition against research on an early embryo up to fourteen days. He also looks at recent cases involving pre-implantation diagnosis (PGD) and tissue typing with a view to obtaining matching tissue from an early embryo for a sibling suffering from a life-threatening disease. Although a distinction has been made between what might be licit in the case of a genetic disorder in the sibling but illicit if the disorder is not genetic, he argues that it could be in the best interests of the early embryo, the child that is to be, if in either case if it was selected with a view to matching the tissue of a sibling. (shrink)

In the immediate future we are likely to witness significant developments in human genetic science. It is therefore of critical importance that Christian ethics engages with the genetics debate, since it affects not just the way we perceive ourselves and the natural world, but also has wider implications for our society. This book considers ethical issues arising out of specific practices in human genetics, including genetic screening, gene patenting, gene therapy, genetic counselling as well as feminist concerns. (...) Genetics and Christian Ethics argues for a particular theo-ethical approach that derives from a modified version of virtue ethics, drawing particularly on a Thomistic understanding of the virtues, especially prudence or practical wisdom and justice. The book demonstrates that a theological voice is highly relevant to contested ethical debates about genetics. (shrink)

Gaucher disease is a rare, chronic,ethnic-specific genetic disorder affecting Jewsof Eastern European descent. It is extremelyexpensive to treat and presents difficultdilemmas for officials and patients in Israelwhere many patients live. First, high-cost,high-benefit, but low volume treatment forGaucher creates severe allocation dilemmas forpolicy makers. Allocation policies driven bycost effectiveness, age, opportunity or needmake it difficult to justify funding. Processoriented decision making based on terms of faircooperation or decisions invoking the ``rule ofrescue'''' risk discriminating against minoritieswho may already suffer from inequitabledistribution (...) of heath care resources. Apartfrom cost, Gaucher disease prompts questionsabout abortion. Unlike severe geneticdisorders, Gaucher offers no grounds forabortion and, in many ways, is analogous togender based abortions that are prohibitedregardless of fetal age. Finally, Gaucherraises concerns about the disclosure of geneticinformation. These affect potential carriersasked to participate in population studies andcarriers and patients who must considerdisclosure to others. These concerns weigh theright to privacy against communal interests andbilateral commitments. (shrink)

Medical genetic interventions can be performed in two ways. First, genetic defects may be repaired (gene therapy). Secondly, a possible future individual (an embryo or a possible combination of gametes) may be preselected because of its favourable genetic make-up (by using genetic diagnostic methods and procedures from reproductive medicine so called Preimplantation Genetic Diagnosis). The first kind of intervention means that someone gets medical treatment in the normal sense, however, the second kind does not. Rather, (...) in that case, the potential patient is exchanged for another individual who is in no need of treatment. The paper explores to what extent arguments for and against these kinds of genetic intervention apply equally to all of them. For example, may the benefits that can be achieved through gene therapy be equally well achieved through genetic preselection? Are fears of a resurrection of eugenic practices through gene technology more warranted regarding therapeutic interventions than regarding preselective ones (or vice versa)? Since genetic preselection is an intervention at the germ-line level and is presently clinically applied: How is it possible to motivate that clinical application of germ-line gene therapy is not similarily permitted? (shrink)

This paper analyses ethical issues in forensic psychiatric research on mentally disordered offenders, especially those detained in the psychiatric treatment system. The idea of a 'dual role' dilemma afflicting forensic psychiatry is more complicated than acknowledged. Our suggestion acknowledges the good of criminal law and crime prevention as a part that should be balanced against familiar research ethical considerations. Research aiming at improvements of criminal justice and treatment is a societal priority, and the total benefit of studies has to be (...) balanced against the risks for research subjects inferred by almost all systematic studies. Direct substantial risks must be balanced by health benefits, and normal informed consent requirements apply. When direct risks are slight, as in register-based epidemiology, lack of consent may be counter-balanced by special measures to protect integrity and the general benefit of better understanding of susceptibility, treatment and prevention. Special requirements on consent procedures in the forensic psychiatric context are suggested, and the issue of the relation between decision competence and legal accountability is found to be in need of further study. The major ethical hazard in forensic psychiatric research connects to the role of researchers as assessors and consultants in a society entertaining strong prejudices against mentally disordered offenders. (shrink)

Whether evolutionary change can occur by genetic assimilation, or more generally by genetic accommodation, remains controversial. Here we examine some of the experimental evidence for both phenomena. Several experiments in Drosophila suggest that assimilation is possible, and a new paper1 shows that a color polyphenism in the tobacco hornworm, Manduca sexta, can evolve by genetic accommodation. We argue that genetic accommodation, including assimilation, is a plausible mechanism in evolution; however, more work is required to test how (...) this mechanism acts and how often it is involved in evolutionary change. BioEssays 28: 868–873, 2006. © 2006 Wiley periodicals, Inc. (shrink)

The IOC and WADA have announced their ambition to develop control program in order to detect athletes' illegitimate use of genetic technology for enhancing performance. Although it is far from clear what such uses should be counted as illegitimate, as well as to what extent the idea of control programs for such things is a feasible idea, I will assume that such programs will concern so-called somatic genetic modifications that aims at altering the athlete's initial bodily biochemistry in (...) a way that may enhance performance without the presence of any medical reason for undertaking such modifications. This means that the envisioned control-program will have to make use of the method of genetic testing in order to detect the possible presence (or non-presence) of various genetic variants within the athlete. As a consequence of this, several ethical issues familiar within the field of genetic testing for health purposes are suddenly actualised within the area of doping control. These issues concern primarily how to handle and communicate the information about the athlete that is uncovered by such testing. However, due to the ways in which gene doping may be performed, in the case of atheletic control programs, issues of medical safety and the question of what hardships it is reasonable to require of athletes to endure also become paramount. As a consequence, one may ask whether or not sporting ethics will have to consider applying the rule of informed consent in connection to testing programs of the kind here discussed. (shrink)

This paper examines a proposal to make use of IVF techniques to provide an alternative to therapeutic abortion of fetuses with genetic abnormalities. We begin by describing the proposed procedure, and then show that, considered in itself, it is morally on a par with therapeutic abortion. However, once the wider practical implications are brought into view, the proposed new procedure loses its initial appeal. The pros and cons are not sufficiently clear-cut entirely to rule out the IVF procedure, so (...) the paper concludes by indicating some further complications which may follow, should the procedure come to be adopted. (shrink)

What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to be tested (...) in terms of good practice, case and statute law, empirical evidence, and ethics. (shrink)

Background Genomic research is challenging the tradition of informed consent. Genomic researchers in the USA, Canada and parts of Europe are encouraged to use informed consent to address the prospect of disclosing individual research results (IRRs) to study participants. In the USA, no national policy exists to direct this use of informed consent, and it is unclear how local institutional review boards (IRBs) may want researchers to respond. Objective and methods To explore publicly accessible IRB websites for guidance in this (...) area, using summative content analysis. Findings Three types of research results were addressed in 45 informed consent templates and instructions from 20 IRBs based at centres conducting genomic research: (1) IRRs in general, (2) incidental findings (IFs) and (3) a broad and unspecified category of ‘significant new findings’ (SNFs). IRRs were more frequently referenced than IFs or SNFs. Most documents stated that access to IRRs would not be an option for research participants. These non-disclosure statements were found to coexist in some documents with statements that SNFs would be disclosed to participants if related to their willingness to participate in research. The median readability of template language on IRRs, IFs and SNFs exceeded a ninth-grade level. Conclusion IRB guidance may downplay the possibility of IFs and contain conflicting messages on IRR non-disclosure and SNF disclosure. IRBs may need to clarify why separate IRR and SNF language should appear in the same consent document. The extent of these issues, nationally and internationally, needs to be determined. (shrink)

Genetic predispositions often concern not only individual persons, but also other family members. Advances in the development of genetic tests lead to a growing number of genetic diagnoses in medical practice and to an increasing importance of genetic counseling. In the present article, a number of ethical foundations and preconditions for this issue are discussed. Four different models for the handling of genetic information are presented and analyzed including a discussion of practical implications. The different (...) models’ ranges of content reach from a strictly autonomous position over self-governed arrangements in the practice of genetic counseling up to the involvement of official bodies and committees. The different models show a number of elements which seem to be very useful for the handling of genetic data in families from an ethical perspective. In contrast, the limitations of the standard medical attempt regarding confidentiality and personal autonomy in the context of genetic information in the family are described. Finally, recommendations for further ethical research and the development of genetic counseling in families are given. (shrink)

New Breeding Techniques such as CRISPR-Cas9 are revolutionizing plant breeding and food production. Experts believe that the social debate about these technologies could be similar to those on green genetic engineering: emotional and highly controversial. Future debate about Genome Editing could benefit from a better understanding of the GMO (genetically modified organism) controversy. Against this background, this paper (a) presents results of a content analysis of position papers criticizing green genetic engineering in Germany. In particular, (b) it focuses (...) on the controversy as a place where normative concepts of nature are debated and become visible. Hence, the study complements existing interpretations by showing that the emerging concepts are more diverse than the familiar reductionist breakdown of the debate into anthropocentric vs. non-anthropocentric conceptions suggests. (shrink)

Ever since the 1960s, media and communication studies have abounded in heated debates concerning the psychological and social effects of fictional media violence. Massive empirical research has first tried to tie film violence to cultivating either fear or aggressive tendencies among its viewership, while later research has focused on other media as well (television, video games). The present paper does not aim to settle the factual question of whether or not medial experiences indeed engender real emotional dispositions. Instead, it brings (...) into play the resources of genetic phenomenology in order to ask how the formation of such dispositions would be generally possible. Thus, it aims to further the discussion by overtly employing the framework of Husserl’s later genetic phenomenology to the field of emotional experience. By posing questions with regard to how fictional emotional experiences contribute to the formation of apperceptions and to the specificities of emotional sedimentation, it also points out some shortcomings in Husserl’s account by drawing from Freud’s dynamic theory of drives and emotions. (shrink)

The article by Dupras and Bunnik. makes a fundamental contribution in the context of the current boom in personalized medicine. We propose an additional crit...

In an increasingly data-driven age of medicine, do companies that offer genetic testing directly to patients represent an important part of personalising care, or a dangerous threat to privacy? Should we celebrate this new mechanism of patient involvement, or fear its implications?The Universities of Oxford and Cambridge addressed these issues in the 10th annual Medical Ethics Varsity Debate, through the motion: “This House Regrets the Rise of Direct-to-Consumer Genetic Testing”. This article summarises and extends key arguments made in (...) the debate, exploring the impacts of such genetic testing on both the individual patient and broader society, with special consideration as to whether companies can ever truly guarantee anonymity of genetic data. (shrink)

In an increasingly data-driven age of medicine, do companies that offer genetic testing directly to patients represent an important part of personalising care, or a dangerous threat to privacy? Should we celebrate this new mechanism of patient involvement, or fear its implications?The Universities of Oxford and Cambridge addressed these issues in the 10th annual Medical Ethics Varsity Debate, through the motion: “This House Regrets the Rise of Direct-to-Consumer Genetic Testing”. This article summarises and extends key arguments made in (...) the debate, exploring the impacts of such genetic testing on both the individual patient and broader society, with special consideration as to whether companies can ever truly guarantee anonymity of genetic data. (shrink)

ABSTRACTThis paper analyses ethical issues in forensic psychiatric research on mentally disordered offenders, especially those detained in the psychiatric treatment system. The idea of a ‘dual role’ dilemma afflicting forensic psychiatry is more complicated than acknowledged. Our suggestion acknowledges the good of criminal law and crime prevention as a part that should be balanced against familiar research ethical considerations. Research aiming at improvements of criminal justice and treatment is a societal priority, and the total benefit of studies has to be (...) balanced against the risks for research subjects inferred by almost all systematic studies. Direct substantial risks must be balanced by health benefits, and normal informed consent requirements apply. When direct risks are slight, as in register‐based epidemiology, lack of consent may be counter‐balanced by special measures to protect integrity and the general benefit of better understanding of susceptibility, treatment and prevention. Special requirements on consent procedures in the forensic psychiatric context are suggested, and the issue of the relation between decision competence and legal accountability is found to be in need of further study. The major ethical hazard in forensic psychiatric research connects to the role of researchers as assessors and consultants in a society entertaining strong prejudices against mentally disordered offenders. (shrink)

The use of genetic engineering inagriculture has been the source of much debate. Todate, arguments have focused most strongly on thepotential human health risks, the flow of geneticmaterial to related species, and ecologicalconsequences. Little attention appears to have beengiven to a more fundamental concern, namely, who willbe the beneficiaries of this technology?Given the prevalence of chronic hunger and thestark economics of farming, it is arguable thatfarmers and the hungry should be the mainbeneficiaries of agricultural research. However, theapplication of (...) class='Hi'>genetic engineering appears unlikely tobenefit either of these two groups. This technology islargely controlled by the private sector, and itscontinued development hinges on its profitability.Thus, the only likely beneficiaries of the applicationof genetic engineering in agriculture are companieswith the capacity to use it. (shrink)

A new landscape of prenatal testing is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new (...) development supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling. (shrink)

Objectives—To assess the process involved in obtaining ethical approval for a single-centre study involving geographically dispersed subjects with an uncommon genetic disorder. Design—Observational data of the application process to 53 local research ethics committees (LRECs) throughout Wales, England and Scotland. The Multicentre Research Ethics Committee (MREC) for Wales had already granted approval. Results—Application to the 53 LRECs required 24,552 sheets of paper and took two months of the researcher's time. The median time taken for approval was 39 days with (...) only seven (13%) of committees responding within the recommended 21 days. In at least nineteen cases (36%) a subcommittee considered the application. Thirty-three committees (62%) accepted the proposal without amendments but, of the remainder, four (8%) requested changes outside of the remit of LRECs. Discussion—Difficulties still exist with the system for obtaining ethical approval for studies involving a single centre but with patients at multiple sites, as is often required for genetic observational research. As such studies differ from true multicentre studies, it may be advantageous to develop a separate and specific process of application to ensure that resources are not unnecessarily expended in the quest for ethical approval. (shrink)

Networks for the exchange and/or sharing of genetic data are developing in many countries. We focus here on the situations in the US and France. We highlight some recent and remarkable differences between these two countries concerning the mode of access to, and the storage and use of genetic data, particularly as concerns two-sided markets and dynamic consent or dynamic electronic informed consent. This brief overview suggests that, even though the organization and function of these two-sided markets remain (...) open to criticism, dynamic e-IC should be more widely used, especially in France, if only to determine its real effectiveness. (shrink)

More than three billion users are currently on one of Meta’s online platforms with Facebook being still their most prominent social media service. It is well known that Facebook has designed a highly immersive social media service with the aim to prolong online time of its users, as this results in more digital footprints to be studied and monetized. In this context, it is debated if social media platforms can elicit addictive behaviors. In the present work, we demonstrate in N (...) = 1,094 users that it is possible to predict from digital footprints of the Facebook users their self-reported addictive tendencies toward social media by applying machine-learning strategies. More specifically, we analyzed the predictive power of a set of models based on different sets of features extracted from digital traces, namely posting activity, language use, and page Likes. To maximize the predictive power of the models, we used an ensemble of linear and non-linear prediction algorithms. This work showed also sufficient accuracy rates in distinguishing between disordered and non-disordered social media users. In sum, individual differences in tendencies toward “social networks use disorder” can be inferred from digital traces left on the social media platform Facebook. Please note that the present work is limited by its cross-sectional design. (shrink)

This work investigates the early encounters of French philosophers and religious thinkers with the phenomenological philosophy of Edmund Husserl. Following an introductory chapter addressing context and methodology, Chapter 2 argues that Henri Bergson's insights into lived duration and intuition and Maurice Blondel's genetic description of action functioned as essential precursors to the French reception of phenomenology. Chapter 3 details the presentations of Husserl and his followers by three successive pairs of French academic philosophers: Léon Noël and Victor Delbos, Lev (...) Shestov and Jean Hering, and Bernard Groethuysen and Georges Gurvitch. Chapter 4 then explores the appropriation of Bergsonian and Blondelian phenomenological insights by Catholic theologians Édouard Le Roy and Pierre Rousselot. Chapter 5 examines applications and critiques of phenomenology by French religious philosophers, including Jean Hering, Joseph Maréchal, and neo-Thomists like Jacques Maritain. A concluding chapter expounds the principal finding that philosophical and theological receptions of phenomenology in France prior to 1939 proceeded independently due to differences in how Bergson and Blondel were perceived by French philosophers and religious thinkers and their respective orientations to the Cartesian and Aristotelian/Thomist intellectual traditions. (shrink)

While pre-implantation genetic diagnosis is available and legal in Malaysia, there is an ongoing controversy debate about its use. There are few studies available on individuals’ attitudes toward PGD, particularly among those who have a genetic disease, or whose children have a genetic disease. To the best of our knowledge, this is, in fact, the first study of its kind in Malaysia. We conducted in-depth interviews, using semi-structured questionnaires, with seven selected potential PGD users regarding their knowledge, (...) attitudes and decisions relating to the use PGD. The criteria for selecting potential PGD users were that they or their children had a genetic disease, and they desired to have another child who would be free of genetic disease. All participants had heard of PGD and five of them were considering its use. The participants’ attitudes toward PGD were based on several different considerations that were influenced by various factors. These included: the benefit-risk balance of PGD, personal experiences of having a genetic disease, religious beliefs, personal values and cost. The study’s findings suggest that the selected Malaysian participants, as potential PGD users, were supportive but cautious regarding the use of PGD for medical purposes, particularly in relation to others whose experiences were similar. More broadly, the paper highlights the link between the participants’ personal experiences and their beliefs regarding the appropriateness, for others, of individual decision-making on PGD, which has not been revealed by previous studies. (shrink)

Exactly when Philosophy of Psychiatry started as a subfield of Philosophy is hard to say. There are several different estimates of how old psychiatry itself is, from one hundred to three hundred years, and of course there has been discussion and treatment of mental illness for at least a couple of thousand years. A host of issues which could count as belonging to the field have been discussed just within the last hundred years. For instance, a large literature on the (...) philosophy of psychoanalysis dates back to the beginning of the century, and in the last thirty years there has been discussion of amnesia and multiple personality in the philosophy of mind, bioethical debate about involuntary hospitalization and the ability of the mentally ill to give informed consent to drug trials, and recent continental philosophy has shown much interest in madness, civilization, capitalism and schizophrenia. However, I suggest that Philosophy of Psychiatry reached a sense of itself as a separate field only in the 1990s. In this time, it has gained its own association, journal, and a book series with a prestigious press. I refer to the American Association for Philosophy and Psychiatry, the associated journal, Philosophy, Psychiatry, and Psychology, and the MIT Press series, Philosophical Psychopathology: Disorders of Mind, edited by Owen Flanagan and George Graham. Jennifer Radden's Divided Minds and Successive Selves is the first book in that series. (shrink)

In this paper, I will present an argument against Husserl’s analysis of picture consciousness. Husserl’s analysis of picture consciousness (as it can be found primarily in the recently translated volume Husserliana 23) moves from a theory of depiction in general to a theory of perceptual imagination. Though, I think that Husserl’s thesis that picture consciousness is different from depictive and linguistic consciousness is legitimate, and that Husserl’s phenomenology avoids the errors of linguistic theories, such as Goodman’s, I submit that his (...) overall theory is unacceptable, especially when it is applied to works of art. Regarding art, the main problem of Husserl’s theory is the assumption that pictures are constituted primarily as a conflict between perception/physical picture thing and imagination/picture object. Against this mentalist claim, I maintain, from a hermeneutic point of view, that pictures are the result of perceptual formations [Bildungen]. I then claim that Husserl’s theory fails, since it does not take into account what I call “plastic perception” [Bildliches Sehen], which plays a prominent role not only within the German tradition of art education but also within German art itself. In this connection, “plastic thinking” [Bildliches Denken] was prominent especially in Klee, in Kandinsky, and in Beuys, as well as in the overall doctrine of the Bauhaus. Ultimately, I argue that Husserl’s notion of picture consciousness and general perceptive imaginary consciousness must be replaced with a more dynamic model of the perception of pictures and art work that takes into account (a) the constructive and plastic moment, (b) the social dimension and (c) the genetic dimension of what it means to see something in something (Wollheim). (shrink)

Definition of the problem: This article describes the communication structure concerning the problems of genetic engineering, in-vitro fertilization and the current debate about „genetic advisory”. Arguments: Proceeding from the social systems theory, two observation types are discriminated: 1st and 2nd orders, which occur here as critical and affirmative positions. The first term refers to specific operations of the social system of medicine, the second to communication of social movements. Neither perspective can deliver total rationality or unity, and the (...) two positions cannot be put together as one rational model. They have to be put into debate structures in order to learn from each other by reciprocal observations. Conclusion: Every kind of observation, taken in a communicative frame like this one, delivers a limited, but necessary contribution to the debate. System rationality will be possible only by coupling asymmetrical observations. This goal will, however, can only be reached, if the communication proceeds in a controversy based mode. This way, the difference between critical and affirmative positions cannot be „solved” but it can be used for further recognition. (shrink)

The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new vision (...) of care. Molecular tumor boards are one response to these changes and are now providing better access to next-generation sequencing and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent documents at all academic medical centers and to introduce dynamic and electronic informed consent. (shrink)

‘The Static-99R is one of the most commonly used risk assessment instruments for individuals convicted of sexual offenses. It has been validated for use on many populations, but few studies specifically target and describe individuals with mental disorders. Additionally, research on the discriminative properties of the instrument over longer follow-up periods is scarce. This article evaluated the validity of the Static-99R using a cohort of individuals with mental disorders convicted of sexual offenses in Sweden with fixed 5-year, 10-year, (...) 15-year, and 20-year follow-up periods. A Static-99R cut score of 6 demonstrated the highest Youden index, maximizing sensitivity and specificity, with 25.8% of recidivists correctly assumed to reoffend sexually and 95.7% of non-recidivists correctly assumed not to. The Static-99R instrument demonstrated adequate discrimination, with only marginal differences for 10-, 15-, and 20-year fixed follow-up. Calibration was acceptable, with the routine sample norms displaying a decisively better fit to the study cohort compared to the high-risk/high-need sample norms. The results affirm the recommendation that, when in doubt and where there is no recent local norm group large enough available, the Static-99R routine sample found in the evaluators’ workbook should be used. (shrink)

The human relationship to trees is arguably as complex as human experience itself. We cohabitate intimately with them as they regulate the systems that sustain us. We use them instrumentally to tra...

Stephens and Grahamset themselves an apparently modest task, to understand why people who experience alien voices and inserted thoughts do not believe that they themselves are the source of these experiences. However, it soon becomes clear that there are many connected issues here. In eight short chapters, they address the phenomenology and ontology of consciousness, the phenomenology of alien voices, inserted thoughts, obsessive-compulsive thoughts and feelings, and other cases of unusual experience often associated with psychopathology, including brief discussion of multiple (...) personality disorder. They survey some of the main empirical explanations of the phenomenology, set out the shortcomings of these theories, and end by proposing their own schematic account. (shrink)

This is the third of three volumes on moral psychology edited by Walter Sinnott-Armstrong and published by MIT Press in 2008.