Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.
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ABSTRACT:
SUBMITTER: Benson C
PROVIDER: S-EPMC8035267 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The intensifying pace of research based on cross-cultural studies in the social sciences necessitates a discussion of the unique challenges of multi-sited research. Given an increasing demand for social scientists to expand their data collection beyond WEIRD (Western, educated, industrialized, rich and democratic) populations, there is an urgent need for transdisciplinary conversations on the logistical, scientific and ethical considerations inherent to this type of scholarship. As a group of social scientists engaged in cross-cultural research in psychology and anthropology, we hope to guide prospective cross-cultural researchers through some of the complex scientific and ethical challenges involved in such work: (a) study site selection, (b) community involvement and (c) culturally appropriate research methods. We aim to shed light on some of the difficult ethical quandaries of this type of research. Our recommendation emphasizes a community-centred approach, in which the desires of the community regarding research approach and methodology, community involvement, results communication and distribution, and data sharing are held in the highest regard by the researchers. We argue that such considerations are central to scientific rigour and the foundation of the study of human behaviour.
| S-EPMC7542829 | biostudies-literature
Project description:BackgroundMuch research is being carried out using publicly available Twitter data in the field of public health, but the types of research questions that these data are being used to answer and the extent to which these projects require ethical oversight are not clear.ObjectiveThis review describes the current state of public health research using Twitter data in terms of methods and research questions, geographic focus, and ethical considerations including obtaining informed consent from Twitter handlers.MethodsWe implemented a systematic review, following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, of articles published between January 2006 and October 31, 2019, using Twitter data in secondary analyses for public health research, which were found using standardized search criteria on SocINDEX, PsycINFO, and PubMed. Studies were excluded when using Twitter for primary data collection, such as for study recruitment or as part of a dissemination intervention.ResultsWe identified 367 articles that met eligibility criteria. Infectious disease (n=80, 22%) and substance use (n=66, 18%) were the most common topics for these studies, and sentiment mining (n=227, 62%), surveillance (n=224, 61%), and thematic exploration (n=217, 59%) were the most common methodologies employed. Approximately one-third of articles had a global or worldwide geographic focus; another one-third focused on the United States. The majority (n=222, 60%) of articles used a native Twitter application programming interface, and a significant amount of the remainder (n=102, 28%) used a third-party application programming interface. Only one-third (n=119, 32%) of studies sought ethical approval from an institutional review board, while 17% of them (n=62) included identifying information on Twitter users or tweets and 36% of them (n=131) attempted to anonymize identifiers. Most studies (n=272, 79%) included a discussion on the validity of the measures and reliability of coding (70% for interreliability of human coding and 70% for computer algorithm checks), but less attention was paid to the sampling frame, and what underlying population the sample represented.ConclusionsTwitter data may be useful in public health research, given its access to publicly available information. However, studies should exercise greater caution in considering the data sources, accession method, and external validity of the sampling frame. Further, an ethical framework is necessary to help guide future research in this area, especially when individual, identifiable Twitter users and tweets are shared and discussed.Trial registrationPROSPERO CRD42020148170; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=148170.
| S-EPMC9748795 | biostudies-literature
Project description:Clinical and population research on dementia and related neurologic conditions, including Alzheimer's disease, faces several unique methodological challenges. Progress to identify preventive and therapeutic strategies rests on valid and rigorous analytic approaches, but the research literature reflects little consensus on "best practices." We present findings from a large scientific working group on research methods for clinical and population studies of dementia, which identified five categories of methodological challenges as follows: (1) attrition/sample selection, including selective survival; (2) measurement, including uncertainty in diagnostic criteria, measurement error in neuropsychological assessments, and practice or retest effects; (3) specification of longitudinal models when participants are followed for months, years, or even decades; (4) time-varying measurements; and (5) high-dimensional data. We explain why each challenge is important in dementia research and how it could compromise the translation of research findings into effective prevention or care strategies. We advance a checklist of potential sources of bias that should be routinely addressed when reporting dementia research.
| S-EPMC4655106 | biostudies-literature
Project description:Phylogenetic analysis of pathogens is an increasingly powerful way to reduce the spread of epidemics, including HIV. As a result, phylogenetic approaches are becoming embedded in public health and research programmes, as well as outbreak responses, presenting unique ethical, legal, and social issues that are not adequately addressed by existing bioethics literature. We formed a multidisciplinary working group to explore the ethical issues arising from the design of, conduct in, and use of results from HIV phylogenetic studies, and to propose recommendations to minimise the associated risks to both individuals and groups. We identified eight key ethical domains, within which we highlighted factors that make HIV phylogenetic research unique. In this Review, we endeavoured to provide a framework to assist researchers, public health practitioners, and funding institutions to ensure that HIV phylogenetic studies are designed, done, and disseminated in an ethical manner. Our conclusions also have broader relevance for pathogen phylogenetics.
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Project description:BackgroundInvolvement of vulnerable populations in research is critical to inform the generalisability of evidence-based medicine to all groups of the population.ObjectiveIn this communication, we reflect on our previous research, and that of other authors, to identify and explore key ethical and methodological considerations.DiscussionFocus groups are a widely implemented qualitative methodology, but their use, particularly in vulnerable neurodegenerative disease populations, is not straightforward. Although the risk of harm is generally low in focus group research, neurodegenerative disease populations are particularly vulnerable to issues relating to comprehension and their capacity to consent. Physical and cognitive impairments may also affect social interactions among participants and therefore impact data collection and analyses.ConclusionWe offer a number of ethical and methodological recommendations to facilitate the processes of recruitment and data collection when conducting focus groups with neurodegenerative disease populations.
| S-EPMC7812104 | biostudies-literature
Project description:BackgroundDeveloping, implementing and evaluating worksite health promotion requires dealing with all stakeholders involved, such as employers, employees, occupational physicians, insurance companies, providers, labour unions and research and knowledge institutes. Although worksite health promotion is becoming more common, empirical research on ethical considerations of worksite health promotion is scarce.MethodsWe explored the views of stakeholders involved in worksite health promotion in focus group discussions and we described the ethical considerations that result from differences between these views. The focus group discussions were organised per stakeholder group. Data were analysed according to the constant comparison method.ResultsOur analyses show that although the definition of occupational health is the same for all stakeholders, namely 'being able to perform your job', there seem to be important differences in the views on what constitutes a risk factor to occupational health. According to the employees, risk factors to occupational health are prevailingly job-related. Labour unions agree with them, but other stakeholders, including the employer, particularly see employee-related issues such as lifestyle behaviour as risk factors to occupational health. The difference in definition of occupational health risk factors translates into the same categorisation of worksite health promotion; employee-related activities and work-related activities. The difference in conceptualisation of occupational health risk factors and worksite health promotion resonates in the way stakeholders understand 'responsibility' for lifestyle behaviour. Even though all stakeholders agree on whose responsibility lifestyle behaviour is, namely that of the employee, the meaning of 'responsibility' differs between employees, and employers. For employees, responsibility means autonomy, while for employers and other stakeholders, responsibility equals duty. This difference may in turn contribute to ambivalent relationships between stakeholders.ConclusionAll stakeholders, including employees, should be given a voice in developing, implementing and evaluating worksite health promotion. Moreover, since stakeholders agree on lifestyle being the responsibility of the employee, but disagree on what this responsibility means (duty versus autonomy), it is of utmost importance to examine the discourse of stakeholders. This way, ambivalence in relationships between stakeholders could be prevented.
| S-EPMC4047781 | biostudies-literature
Project description:Dogs are increasingly used in a wide range of detection tasks including explosives, narcotics, medical, and wildlife detection. Research on detection dog performance is important to understand olfactory capabilities, behavioral characteristics, improve training, expand deployment practices, and advance applied canine technologies. As such, it is important to understand the influence of specific variables on the quantification of detection dog performance such as test design, experimental controls, odor characteristics, and statistical analysis. Methods for testing canine scent detection vary influencing the outcome metrics of performance and the validity of results. Operators, management teams, policy makers, and law enforcement rely on scientific data to make decisions, design policies, and advance canine technologies. A lack of scientific information and standardized protocols in the detector dog industry adds difficulty and inaccuracies when making informed decisions about capability, vulnerability, and risk analysis. Therefore, the aim of this review is to highlight important methodological issues and expand on considerations for conducting scientifically valid detection dog research.
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Project description:ObjectiveTwo-step questions to assess gender identity are recommended for optimizing care delivery for gender-diverse individuals. As gender identity fields are increasingly integrated into electronic health records, guidance is needed on how to analyze these data. The goal of this study was to assess potential approaches for analyzing 2-step gender identity questions and the impact of each on suicidal ideation.Materials and methodsA regional Youth Risk Behavior Survey in one Northeastern school district used a 2-step question to assess gender identity. Three gender measurement strategies (GMSs) were used to operationalize gender identity, (1) combining all gender-diverse youth (GDY) into one category, (2) grouping GDY based on sex assigned at birth, and (3) categorizing GDY based on binary and nonbinary identities. Mixed-effects logistic regression was used to compare odds of suicidal ideation between gender identity categories for each GMS.ResultsOf the 3010 participants, 8.3% were GDY. Subcategories of GDY had significantly higher odds (odds ratio range, 1.6-2.9) of suicidal ideation than cisgender girls regardless of GMS, while every category of GDY had significantly higher odds (odds ratio range, 2.1-5.0) of suicidal ideation than cisgender boys.ConclusionsThe field of clinical informatics has an opportunity to incorporate inclusive items like the 2-step gender identity question into electronic health records to optimize care and strengthen clinical research. Analysis of the 2-step gender identity question impacts study results and interpretation. Attention to how data about GDY are captured will support for more nuanced, tailored analyses that better reflect unique experiences within this population.
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Project description:This paper explains the process of developing a scenario involving the use of a robotic platform to enhance the work experience of disabled employees. We outline the challenges involved in revealing the potential unintended consequences of introducing elements of Artificial Intelligence, automation, and robotics into a socially and ethically complex and potentially fragile scenario, and the practical challenges involved in giving a voice to vulnerable users throughout the design process. While an ideal case scenario would involve the disabled employees as much as possible directly in the design process, this can, realistically, be a challenge. In this paper, we detail a methodological and analytic approach that is centered around ethnography and design fictions. It is designed to provide a deeper understanding of all the stakeholders involved in the scenario while encouraging ethical reflection. Based on our findings, we argue that, while it is relatively easy to adopt an a priori ethical stance through notions such as inclusivity and accessibility, there are risks involved in making such a priori prescriptions with respect to the perspectives of different stakeholders in an applied research project. More specifically, we highlight the importance of understanding the broad organizational and bureaucratic characteristics of a business or workplace when devising HRI scenarios and tasks, and of considering elements such as business models, operating philosophy, and organizational hierarchies in the design process.
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Project description:Family caregivers of migrants with dementia constitute a population group that is hard to reach for research participation due to factors such as shame about the disease and past experiences of discrimination. In this article, research-ethical challenges associated with participant recruitment and qualitative data collection among relatives of migrants with dementia are discussed. Over a period of 8 years, 3 studies were conducted to investigate the experiences of family caregivers for persons with dementia of Turkish descent in Germany. Across these studies, a total of 32 family caregivers were interviewed. In this article, based on the "Principles of Biomedical Ethics" according to Beauchamp and Childress (2009), research-ethical conflicts associated with sampling methods and the presence of third parties during qualitative interviews are discussed. The potential risks emanating from sampling strategies and the presence of third parties during interviews regarding the voluntary nature of study participation are examined. Additionally, this article formulates recommendations for ensuring truly voluntary participation and protecting both the participants (family caregivers) and relatives with dementia from harm. These practical recommendations aim to help future researchers to avoid ethical pitfalls and represent a roadmap for making necessary methodological decisions.
| S-EPMC9290906 | biostudies-literature