Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent (...) questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (shrink)

BackgroundIn the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort, participants underwent magnetic resonance imaging (MRI) of the brain, heart, and abdomen, that generated incidental findings (IFs). The approach to managing these unexpected results remain a complex issue. Our objectives were to describe the CAHHM policy for the management of IFs, to understand the impact of disclosing IFs to healthy research participants, and to reflect on the ethical obligations of researchers in future MRI studies.MethodsBetween 2013 and 2019, 8252 participants (...) (mean age 58 ± 9 years, 54% women) were recruited with a follow-up questionnaire administered to 909 participants (40% response rate) at 1-year. The CAHHM policy followed a restricted approach, whereby routine feedback on IFs was not provided. Only IFs of severe structural abnormalities were reported.ResultsSevere structural abnormalities occurred in 8.3% (95% confidence interval 7.7–8.9%) of participants, with the highest proportions found in the brain (4.2%) and abdomen (3.1%). The majority of participants (97%) informed of an IF reported no change in quality of life, with 3% of participants reporting that the knowledge of an IF negatively impacted their quality of life. Furthermore, 50% reported increased stress in learning about an IF, and in 95%, the discovery of an IF did not adversely impact his/her life insurance policy. Most participants (90%) would enrol in the study again and perceived the MRI scan to be beneficial, regardless of whether they were informed of IFs. While the implications of a restricted approach to IF management was perceived to be mostly positive, a degree of diagnostic misconception was present amongst participants, indicating the importance of a more thorough consent process to support participant autonomy.ConclusionThe management of IFs from research MRI scans remain a challenging issue, as participants may experience stress and a reduced quality of life when IFs are disclosed. The restricted approach to IF management in CAHHM demonstrated a fair fulfillment of the overarching ethical principles of respect for autonomy, concern for wellbeing, and justice. The approach outlined in the CAHHM policy may serve as a framework for future research studies.Clinical trial registrationhttps://clinicaltrials.gov/ct2/show/nct02220582. (shrink)

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in (...) relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice. (shrink)

Background: In the Netherlands, people with severe cognitive deficits due to Korsakoff syndrome are generally admitted to a specialized nursing home. Professional caregivers experience that these residents are often not aware of their deficits, and consequently, their willingness to accept care is relatively low. However, these residents need permanent support when performing daily tasks due to severe cognitive deficits. The combination of objective care needs and low subjective responsiveness makes caring for people with Korsakoff syndrome a complex undertaking. It is (...) unknown how professional caregivers deal with this complex task and how they manage the associated ethical challenges. Objectives: The aim of this study was to explore the professional caregivers’ perspectives on good care for residents with Korsakoff syndrome. Methods: A qualitative study design was used. Data were collected via semi-structured interviews. The Framework Method was used for the thematic analyses of the interview data. Participants and research context: Five specialized nursing homes participated in this study. Twelve professional caregivers, including nurses, nursing assistants, and support workers, were selected based on the ability to provide rich information on the study topics and to capture a variety of demographic and professional characteristics. Ethical considerations: The institutional review board of the VU University Medical Center Amsterdam approved the research protocol. The study was conducted in accordance with the ethical principles for medical research involving human subjects. Findings: Three perspectives on good care emerged: (1) making daily life a joint effort, (2) being steadfast, and (3) treating with respect. Discussion and conclusion: Professional caregivers try to achieve responsiveness in people with Korsakoff syndrome in three different ways. These perspectives reflect fundamentally different views on the care relationship and the autonomy of the resident. By elucidating the three perspectives, we hope to promote the practitioners’ reflection on their own ideas about good care for people with Korsakoff syndrome. (shrink)

Bioethical Prescriptions collects F.M. Kamm's articles on bioethics -- revised for publication in book form -- which have appeared over the last 25 years and which have made her among the most widely-respected philosophers working in this field.

Efforts to include women in the canon have long been beset by reactionary gatekeeping, typified by the charge “That's not philosophy.” That charge doesn't apply to early and mid‐analytic female philosophers—Welby, Ladd‐Franklin, Bryant, Jones, de Laguna, Stebbing, Ambrose, MacDonald—with job titles like lecturer in logic and professor of philosophy and publications in Mind, the Journal of Philosophy, and Proceedings of the Aristotelian Society. It's hopeless to dismiss their work as “not philosophy.” But comparable reactionary gatekeeping affects them, this paper argues, (...) typified by the labels “bad philosophy” and “derivative philosophy.” Virtue and vice epistemology help explain why these women have been neglected and why their own approaches are epistemically virtuous. Their contemporaries and historians are deficient in scholarly virtues in labelling these women's work “bad” or derived from male mentors with no or specious justification. Their disparaged qualities—intellectual humility, modesty, critical self‐reflection, disclosing biases—are often epistemic virtues. (shrink)

In this volume, F.M. Kamm explores how theories as well as hypothetical and practical cases help us understand rights and their limits. The book begins by considering moral status and its relation to having rights (including whether non-human animals have rights and what rights future persons have). The author then considers whether rights are grounded in duties to oneself, which duties are correlative to rights, and whether neuroscientific and psychological studies can help determine what rights we have. Kamm next investigates (...) the contours of the right not to be harmed by considering critiques of deontological distinctions, the costs that must be undertaken to avoid harming, and a proposal for permissibly harming someone (that allows for resisting the harm) in the Trolley Problem. Additional chapters cover possible implications of the Trolley Problem for such practical issues as correctly programming self-driving cars, providing medical treatments, and enacting redistributive economic policy. Kamm concludes the book by comparing the use of case-based judgments about extreme cases in moral versus aesthetic theory, and by exploring the significance of the right not to be harmed for morally correct policies in the extreme cases of torture and a pandemic. Where pertinent, Kamm considers the views of Derek Parfit, Tom Regan, Christine Korsgaard, Shelly Kagan, Ronald Dworkin, Amartya Sen, Allan Gibbard, Joshua Greene, Arthur Danto, and Judith Thomson, among others."--Provided by publisher. (shrink)

Lecture I begins with a brief history of changing views on what the Trolley Problem is and attempts to solve it. The lecture then critically examines Judith Thomson’s recent view that a moral distinction between killing and letting die, and between what a conductor of the trolley or a mere bystander may do to save people from the trolley, eliminates what she now thinks of as the Trolley Problem. The last part considers a different argument for the conclusion that Thomson (...) now favors, but ultimately attempts to resurrect the Trolley Problem, suggesting that it is not who turns the trolley that makes the turning permissible. (shrink)

Zeller argued that the ‘innumerable worlds’ mentioned in accounts of Anaximander's system must be an endless succession of single worlds, not an unlimited number of coexistent worlds scattered through infinite space, some always coming into being while others are passing away. Zeller pointed out that a succession of single worlds is grounded in the principles of the system. ‘Things perish into that from which they had their birth… according to the order of Time,’ a cycle of birth, existence, and destruction. (...) A world ends, and the living divine stuff begets a new world to take its place. On the other hand, there is much in the system to contradict the idea of coexistent worlds. Anaximander's successors, Anaximenes, Anaxagoras, and Diogenes, show that this idea is not a necessary consequence of the unlimitedness of the original world-stuff. Nothing in the appearances of Nature suggests it. Anaximander is a monistic hylozoist, whereas Democritus is a pluralist with his innumerable independent atoms producing, by similar processes, independent world-systems in different parts of an infinite void. (shrink)