The 2015 UK Supreme Court judgment in Montgomery v Lanarkshire reinforces the importance of informed consent to medical treatment. This paper suggests that Montgomery recognises the challenge faced by vulnerable individuals in choosing between treatment options and making decisions with appreciation of information about material risks. The judgment endorses a form of weak paternalism to safeguard such persons, which is not disrespectful of the aggregate principles of the Mental Capacity Act 2005. But ethical practice requires professionals to tread carefully between (...) weak and hard paternalism in the context of therapeutic interactions with vulnerable patients, while ensuring their awareness of material risks. (shrink)

Background:Adolescents’ health choices have been widely researched, but the ethical basis of these choices, namely their rights, duties, and responsibilities, have been disregarded and scale is required to measure these.Objective:To describe the development of a scale that measures adolescents’ rights, duties, and responsibilities in relation to health choices and document the preliminary scale testing.Research design:A multi-phase development method was used to construct the Health Rights Duties and Responsibilities ( HealthRDR) scale. The concepts and content were defined through document analysis, a (...) systematic literature review, and focus groups. The content validity and clarity of the items were evaluated by expert panel of 23 adolescents, school nurses, and researchers. We calculated the content validity index and the content validity ratio at on item and scale levels. Preliminary testing was conducted with 200 adolescents aged 15–16 years. Descriptive statistics, Cronbach’s alpha correlation, and statistics for the item-analysis were calculated.Ethical considerations:Ethical approval and permission were obtained according to national legislation and responsible research practice was followed. Informed consent was obtained from the participants and the parents were informed about the study.Findings:The Health Rights Duties and Responsibilities scale comprises of four sub-scales with 148 items: 15 on health choices, 36 on rights, 47 on duties, and 50 on responsibilities. The items had a 0.93 content validity index and a 0.85 content validity ratio. Cronbach’s alpha correlation coefficient was 0.99 for the total scale and the individual sub-scales scores were health choices (0.93), rights (0.97), responsibilities (0.99), and duties (0.98).Discussion:The findings are discussed in light of the ethical concepts and validity and reliability of the developed scale.Conclusion:The Health Rights Duties and Responsibilities scale defines and understands adolescents’ rights, duties, and responsibilities in relation to health choices and has good content validity. Further testing and refinement of the concepts are needed. (shrink)

Patient’s duties are a topical but little researched area in nursing ethics. However, patient’s duties are closely connected to nursing practice in terms of autonomy, the best purpose of care and rethinking from the patient’s perspective. This article is a metasynthesis (N = 11 original articles) of patient’s duties, aimed to create a tentative model. In this article, a tentative model called ‘right-based duties of a patient’ was constructed. With its aid, a coherent structure of patient’s duties within different roles (...) and objects of a patient can be defined. In addition, the ethical basis, prerequisites, outcomes and risks of patient’s duties can be named. In conclusion, so-called right-based duties of a patient constitute the basic argument. Patient’s duties are not unambiguous for all patients, and the global perspective to duties has been challenged. However, due to both conceptual and practical reasons, rethinking of patient’s duties is needed. (shrink)

Autism as a polysemic and dynamic phenomenonIn this paper we demonstrate how the dominant discourse about autism, that stresses biological explanations, has certain ethical implications. On the one hand, such discourse is exculpating. In autism’s history, genetic explanations helped removing the blame from so-called refrigerator mothers. In present-day diagnostic practice, the idea of having a biological diagnosis helps people and their parents see beyond blame and guilt. On the other hand, a simplistic approach to biology risks neglecting the experiences and (...) stories of autistic people in favour of finding causes and cures. In our own research we have noticed that narratives of autistic people explore an alternative autism discourse, one that demonstrate multiple meanings and dynamics of autism. We demonstrate, using the theories of Georges Canguilhem and the science of epigenetics, how dynamic models of life and mind offer the possibility to look at autism differently. Rather than seeing autistic people as people with fundamental flaws in their genes or software faults in their brains that have to be explained, autism appears as a phenomenon that exists in interaction with the context, as a meaningful reaction to the environment. (shrink)