Diverging medical and legal perceptions of the need for legal guardianship in people with dementia: A qualitative study.

BACKGROUND: Dementia is assumed to alter mental capacity, which may necessitate legal guardianship. However, only limited research exists on how dementia affects mental capacity, and most studies have focused solely on a medical perspective and concentrate on memory functions. The aim of this qualitative study was to investigate physicians' and legal experts' perceptions on a broad range of cognitive and neuropsychiatric domains potentially affecting mental capacity and the need for guardianship in people with dementia. METHODS: Physicians (N = 30) and legal experts (N = 20) participated in semi-structured individual interviews. The data were analyzed by using content analysis and further semi-quantified according to the cognitive and neuropsychiatric domains. RESULTS: Physicians considered neuropsychiatric symptoms and executive dysfunction to be the most important deficits in the legal context, while legal experts highlighted episodic memory impairment and dyscalculia. Perceptions regarding the importance of several cognitive and neuropsychiatric symptoms varied between and within the professional groups. CONCLUSIONS: Physicians and legal experts diverged in their perceptions of cognitive and neuropsychiatric domains affecting mental capacity and the need for guardianship. The evaluation and influence of medical evidence among legal experts heavily rely on subjective opinions. Given the substantial potential impact on patients' equal access to their rights, developing standardized guidelines is essential.

The ethical implications of genetic testing in neurodegenerative diseases: A systematic review.

BACKGROUND: Availability of genetic testing in neurodegenerative disorders has developed rapidly. This growing ability is providing specific genetic information to individuals and, in turn, their families, raising ethical concerns. However, family members' perspective is a seldom-studied phenomenon. AIM: The aim of this systematic review was to describe the ethical aspect of genetic testing in neurodegenerative diseases from the perspective of at-risk family members. METHOD: A systematic review of data was performed in accordance with the PRISMA statement. The data search was conducted using the CINAHL, PubMed and Scopus databases to identify original peer-reviewed studies published between January 2009 and April 2019. A total of 24 articles were selected. The data were analysed using inductive content analysis. FINDINGS: On the basis of the analysis, four central ethical implications were identified: (i) decision-making in genetic testing as a dilemma: balance between autonomy and responsibility, (ii) the individual's right to make a voluntary and informed decision for genetic testing, (iii) conflicting emotions after knowing one's genetic status and (iv) privacy and confidentiality of genetic information: the fear of genetic discrimination and stigma. CONCLUSIONS: The findings of this review increase understanding about the central ethical implications of genetic testing in neurodegenerative diseases from the perspective of family members, and identify and underline outstanding needs for further research.

Collaborative partnership and the social value of clinical research: a qualitative secondary analysis.

BACKGROUND: Protecting human subjects from being exploited is one of the main ethical challenges for clinical research. However, there is also a responsibility to protect and respect the communities who are hosting the research. Recently, attention has focused on the most efficient way of carrying out clinical research, so that it benefits society by providing valuable research while simultaneously protecting and respecting the human subjects and the communities where the research is conducted. Collaboration between partners plays an important role and that is why we carried out a study to describe how collaborative partnership and social value are emerging in clinical research. METHODS: A supra-analysis design for qualitative descriptive secondary analysis was employed to consider a novel research question that pertained to nurse leaders' perceptions of ethical recruitment in clinical research and the ethics-related aspects of clinical research from the perspective of administrative staff. The data consisted of two separate pre-existing datasets, comprising 451 pages from 41 interviews, and we considered the research question by using deductive-inductive content analysis with NVivo software. A deductive analysis matrix was generated on the basis of two requirements, namely collaborative partnership and social value, as presented in An Ethical Framework for Biomedical Research by Emanuel et al. RESULTS: The findings showed that collaborative partnership was a cornerstone for ethical clinical research and ways to foster inter-partner collaboration were indicated, such as supporting mutual respect and equality, shared goals and clearly defined roles and responsibilities. In addition, the social value of clinical research was an important precondition for ethical clinical research and its realisation required the research partners to demonstrate collaboration and shared responsibility during the research process. However, concerns emerged that the multidimensional meaning of clinical research for society was not fully recognised. Achieving greater social value for clinical research required greater transparency, setting research priorities, shared responsibility for the dissemination and use of the findings and stronger community awareness of the ethics-related aspects of clinical research. CONCLUSIONS: Collaborative partnership and social values are essential for protecting the human subjects and communities involved in clinical research.

Nurse leaders' perceptions of the ethical recruitment of study subjects in clinical research.

AIM: The aim of this study was to describe nurse leaders' perceptions of ethical recruitment in clinical research. BACKGROUND: Nurse leaders are expected to get involved in clinical research, but there are few studies that focus on their role, particularly the ethical issues. METHOD: Qualitative data were collected from ten nurse leaders using thematic one-to-one interviews and analysed with content analysis. RESULTS: Nurse leaders considered clinical research at their workplace in relation to the key issues that enabled ethical recruitment of study subjects in clinical research. These were: early information and collaboration for incorporating clinical research in everyday work, an opportune and peaceful recruitment moment and positive research culture. CONCLUSION: Getting involved in clinical research is part of the nurse leader's professional responsibility in current health care. They have an essential role to play in ensuring that recruitment is ethical and that the dignity of study subjects is maintained. IMPLICATIONS FOR NURSING MANAGEMENT: The duty of nurse leaders is to maintain good contact with other collaborators and to ensure good conditions for implementing clinical research at their site. This requires a comprehensive understanding of the overall situation on their wards. Implementing clinical research requires careful planning, together with educating, supporting and motivating nursing staff.

Privacy of Clinical Research Subjects: An Integrative Literature Review.

With changes in clinical research practice, the importance of a study-subject's privacy and the confidentiality of their personal data is growing. However, the body of research is fragmented, and a synthesis of work in this area is lacking. Accordingly, an integrative review was performed, guided by Whittemore and Knafl's work. Data from PubMed, Scopus, and CINAHL searches from January 2012 to February 2017 were analyzed via the constant comparison method. From 16 empirical and theoretical studies, six topical aspects were identified: the evolving nature of health data in clinical research, sharing of health data, the challenges of anonymizing data, collaboration among stakeholders, the complexity of regulation, and ethics-related tension between social benefits and privacy. Study subjects' privacy is an increasingly important ethics principle for clinical research, and privacy protection is rendered even more challenging by changing research practice.