Mark Schweda

The Diversity of Responsibility: The Value of Explication and Pluralization

PurposeAlthough the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis.MethodsWe start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, personal, and social responsibility. The value of our analytical matrix is illustrated by sorting out the plurality of responsibility models in three cases (organ transplantation, advance directives, and genetic testing).ResultsResponsibility is a relational term involving at least seven relata. The analysis of the relata allows distinguishing between individual versus collective agency, retrospective versus prospective direction, and liability versus power relations. Various bioethical ambiguities result from insufficient, implicit, or inappropriate ascriptions of responsibility.ConclusionsA systematic conception of responsibility is an important tool for bioethical reflection. It allows an in-depth understanding and critique of moral claims on a meta-ethical level without presuming one particular normative approach. Considering the concept of responsibility can also help to complement the current bioethical focus on individual autonomy by including the perspectives of other actors, such as family members or social groups.

Public moralities concerning donation and disposition of organs: results from a cross-European study.

There are not many international consensuses in the governance of biomedicine. One that exists concerns a general reluctance toward a commercialization of organ procurement. However, with reference to the problem of “organ scarcity,” there is an increasingly louder call in ethical and legal discourse to “give urgent consideration to any option that may make up the shortfall,” and to establish a debate on financial incentives “without any taboos.” Other ethicists and jurists criticize this development, and warn of injustice, exploitation of the poor, and a commodification of the human body.

Before it is too late: professional responsibilities in late-onset Alzheimer’s research and pre-symptomatic prediction

The development of a wide array of molecular and neuroscientific biomarkers can provide the possibility to visualize the course of Alzheimer’s disease (AD) at early stages. Many of these biomarkers are aimed at detecting not only a preclinical, but also a pre-symptomatic state. They are supposed to facilitate clinical trials aiming at treatments that attack the disease at its earliest stage or even prevent it. The increasing number of such biomarkers currently tested and now partly proposed for clinical implementation calls for critical reflection on their aims, social benefits, and risks. This position paper summarizes major challenges and responsibilities. Its focus is on the ethical and social problems involved in the organization and application of dementia research, as well as in healthcare provision from a cross-national point of view. The paper is based on a discussion of leading dementia experts from neuroscience, neurology, social sciences, and bioethics in the United States and Europe. It thus reflects a notable consensus across various disciplines and national backgrounds. We intend to initiate a debate on the need for actions within the researchers’ national and international communities.

Popularizing Dementia: Public Expressions and Representations of Forgetfulness

Fiction film is one of the most influential vehicles for the popularization of dementia. It is likely to have a particular influence on the way dementia is constructed by society at large, not least due to its consumption in the guise of entertainment. In this paper, we will argue that such popularization is rarely innocent or unproblematic. Representations of people with dementia in film tend to draw heavily on familiar tropes such as global memory loss, violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and early death. Audiences may therefore uncritically absorb discourses which reinforce negative stereotypes and perpetuate the biomedical orthodoxy that everything a person with dementia says or does is ‘a symptom of the disease.’

HOW DO WE WANT TO GROW OLD? ANTI‐AGEING‐MEDICINE AND THE SCOPE OF PUBLIC HEALTHCARE IN LIBERAL DEMOCRACIES

Healthcare counts as a morally relevant good whose distribution should neither be left to the free market nor be simply imposed by governmental decisions without further justification. This problem is particularly prevalent in the current boom of anti-ageing medicine. While the public demand for medical interventions which promise a longer, healthier and more active and attractive life has been increasing, public healthcare systems usually do not cover these products and services, thus leaving their allocation to the mechanisms of supply and demand on the free market. This situation raises the question on which basis the underlying preferences for and claims to a longer, healthier life should be evaluated. What makes anti-ageing medicine eligible for public funding? In this article, we discuss the role of anti-ageing medicine with regard to the scope and limits of public healthcare. We will first briefly sketch the basic problem of justifying a particular healthcare scheme within the framework of a modern liberal democracy, focusing on the challenge anti-ageing interventions pose in this regard. In the next section, we will present and discuss three possible solutions to the problem, essentialistic, transcendental, and procedural strategies of defining the scope of public healthcare. We will suggest a procedural solution adopting essentialistic and transcendental elements and discuss its theoretical and practical implications with regard to anti-ageing medicine.

Wie ist es, dement zu sein?

ZusammenfassungDer Perspektive der Betroffenen kommt im medizinethischen Fachdiskurs der Gegenwart eine grundlegende Bedeutung zu. Im Fall der Demenz wird der Zugang zu ihr allerdings durch krankheitsbedingte Abbauprozesse zunehmend erschwert. Neben anderen künstlerisch-ästhetischen Annäherungen ist in den letzten 15 Jahren auch eine Fülle an Spielfilmen zu verzeichnen, die sich mit der Erfahrung der Demenz beschäftigen. Der Beitrag geht der Frage nach, inwieweit solche filmischen Gestaltungen neue Zugänge zum Demenzerleben eröffnen und was Film als Medium und Kunstform somit für die ethische Auseinandersetzung mit Demenz zu leisten vermag. Dabei werden drei prominente filmästhetische Zugangswege eingehender untersucht, an ausgewählten Beispielen erläutert und unter ethischen Gesichtspunkten erörtert. Es zeigt sich, dass die ethischen Potenziale eines reflektierten Umgangs mit filmischen Annäherungen an die Demenz längst nicht ausgeschöpft sind.AbstractDefinition of the problemThe perspectives of those affected play a central role in contemporary bioethics. In the case of dementia, however, these perspectives seem to become increasingly inaccessible. In the last 15 years, there has been a surge of motion pictures that deal with the experience of dementia.ArgumentsThis paper explores in how far film can open a new approach to the perspectives of persons affected by dementia and thus contribute to the bioethical discussion. Three filmic approaches are examined, explained on the basis of concrete examples, and discussed from an ethical point of view.ConclusionThe specific potential of film for the bioethical discussion of dementia is hardly exhausted and calls for systematic consideration.

Clinical and personal utility of genomic high-throughput technologies: perspectives of medical professionals and affected persons

In the evaluation of genomic high-throughput technologies, the idea of “utility” plays an important role. The “clinical utility” of genomic data refers to the improvement of healthcare outcomes, its “personal utility” to benefits that go beyond healthcare purposes. Both concepts are contested. Moreover, there are only few empirical insights regarding their interpretation by those professionally involved or personally affected. Our paper presents results from qualitative research (20 semi-structured interviews) regarding professionals’ and personally affected people’s views on the utility of genomic information. We find that the discussion of clinical utility is the domain of professionals who primarily consider aspects of test validity and clinical outcomes. By contrast, personal utility plays a prominent role in affected persons’ discussions. Four different aspects are addressed: (a) life and family planning, (b) relief and justification, (c) self-knowledge and self-determination, and (d) entertainment. These differences have important implications for informed consent and counseling in the context of genomic high-throughput technologies.

Return to childhood? Against the infantilization of people with dementia

The idea that dementia is essentially a return to childhood and those affected must somehow be similar to children constitutes a deeply rooted and pervasive cultural trope. While such tropes may be helpful in making sense of an otherwise elusive and inscrutable state, they can at the same time promote inadequate understandings of dementia and hence also influence our attitudes and behaviour towards those affected in several problematic ways. In the present work, we provide a detailed account of the origins and implications of the idea that people with dementia are somehow similar to children. In order to spell out the normative significance of this trope and to analyse its shortcomings, we will rely on a life-course perspective. We will point out that the second-childhood trope does not do justice to the particularities of the life phases of both children and people with dementia. This lack of biographical sensitivity brings about undignified treatment of and harm to those who have previously lived more autonomous lives. In conclusion, we will argue that people with dementia should not be equated with children as they are at a different point in their lives. This critical analysis of the second-childhood trope shows the usefulness of a culturally and biographically sensitive theoretical framework for bioethical reflection. In particular, it provides reasons to reject infantilizing attitudes and behaviours and instead take seriously the personality, values and preferences shaped throughout the course of an individuals life.

Are older people a vulnerable group? Philosophical and bioethical perspectives on ageing and vulnerability

The elderly are often considered a vulnerable group in public and academic bioethical debates and regulations. In this paper, we examine and challenge this assumption and its ethical implications. We begin by systematically delineating the different concepts of vulnerability commonly used in bioethics, before then examining whether these concepts can be applied to old age. We argue that old age should not, in and of itself, be used as a marker of vulnerability, since ageing is a process that can develop in a variety of different ways and is not always associated with particular experiences of vulnerability. We, therefore, turn to more fundamental phenomenological considerations in order to reconstruct from a first person perspective the intricate interconnections between the experiences of ageing and vulnerability. According to this account, ageing and old age are phenomena in which the basic anthropological vulnerability of human beings can manifest itself in an increased likelihood of harm and exploitation. Thus, we plead for a combined model of vulnerability that helps to avoid problems related to the current concepts of vulnerability. We conclude first that old age as such is not a sufficient criterion for being categorized as vulnerable in applied ethics, and second that reflections on ageing can help to develop a better understanding of the central role of vulnerability in human existence and in applied ethics.

The Use Of Genomic Information In Medical Practice: A Survey On People's Knowledge, Expectations, And Fears

Background Integrating novel medical technologies, like genomic high throughput research, into daily clinical practice very often involves considering various ethical, legal and social aspects (ELSA). Here, we aim to survey the attitudes towards the use of genomic high thoughput technologies and compare the views of different groups of participants, e.g. geneticists, physicians, patients, and the general population. To get an idea of the current perspectives, we developed a questionnaire that investigates on the one hand the current state of knowledge about the field of genetics (e.g. legal aspects) and on the other hand surveys the attitudes, fears, and expectations toward genome sequencing approaches. Methods We developed a questionnaire to assess people’s knowledge about genetics, professional experiences in the genetic context as well as their personal attitudes, fears and expectations towards the disclosure of findings from genomic high throughput approaches. The recruitment started in May 2016 and so far the sample includes data of 151 individuals that we studied in a preliminary analysis. Results 63 % of the participants would get their genome sequenced if they had the possibility in a clinical or in a research context. The wish to receive information about a finding heavily depended on the specifics of the finding in question. In case of a finding about a somatic genetic disease, 70.8 % wanted to be informed, in case of a psychiatric disorder, only 54.5 % wanted to receive information. Interestingly 83.4 % of participants who had a psychiatric disorder themselves wished to learn findings concerning psychiatric disorders, whereas only 48.6% of participants who had no psychiatric disorders wanted to be informed about those findings. When asked about potential consequences after disclosure, a majority of participants found that such knowledge might cause them to experience distress, even to the point of developing a depression. With regard to the disclosure of a clinically relevant finding, the majority of respondents (77.3%) were strongly interested in receiving counseling sessions. Regarding participants´ assumptions about legal regulations, we find that 52.3 % believe that there is a legal duty to disclose an incidental finding in the research context. Discussion Our data show that, in general, there is a positive and open attitude toward the implementation of genomic high throughput approaches. However, there comes a point where participants do not want to be informed anymore. The willingness to receive information on one’s own genetic conditions based on genomic data is critically influences by the characteristics of the potential finding. Of particular note, people are much more open toward learning about a risk of a somatic genetic disease than they are about receiving information related to a psychiatric disorder. This finding is relevant to the field of psychiatric genetics as it indicates that there still might be subliminal tendencies of stigmatization. Further analysis will show to what extent the stakeholders’ attitudes will differ and if knowledge and expertise in the field has an impact on attitudes.