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This chapter aims to provide an overview of the ethical framework and decision-making in clinical dementia research, and to analyze and discuss the ethical challenges and issues that can arise when conducting clinical dementia research.

Informed consent is the most scrutinized and controversial aspect of clinical research ethics. In clinical dementia research, assessing decision-making capacity may be challenging as the nature and progress of each disease influences decision-making capacity in diverse ways. Persons with dementia represent a vulnerable population deserving special attention when developing, implementing, and evaluating the informed consent process. In this chapter, particular attention will be given to vulnerability categories and how these influence decision-making capacity. Ethical frameworks with a pragmatic contour and implication are needed to protect vulnerable patients from potential harms and ensure their optimal participation in clinical dementia research.

In addition, this chapter analyses important ethical challenges and issues in clinical dementia research. If handled thoughtfully, they would not pose insuperable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and cause harm to research participants. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the participants with dementia and protection of their vulnerabilities and rights.

A core set of ethical questions and recommendations are drawn to aid researchers, institutional review boards and potential research participants in the process of participating in clinical dementia research.

This chapter examines the rights of those who have their photograph taken for use by non-profit organisations (such as non-governmental organisations, charities, and academic institutions) and the obligations of those producing and using these images to not abuse those rights. The chapter focusses on informed consent as the key intersection of these rights and obligations. It examines the specifics of what is meant by ‘informed consent’ and the importance of the process of it being requested and given. The argument presented suggests, rather than seeing this process as a legal, one-off contract, that it should be seen as a relationship that may evolve over time and, to a degree, attempts to establish a more equitable relationship between those who produce and publish images and those who appear in them. It is suggested that this process can play a role in addressing a number of ethical issues, including the safety of the individual being photographed and how vulnerable populations are represented visually.

The purpose of this study is to consider informed consent with those who may be legally judged incapable of consent. Frequently individuals with traumatic brain injuries and intellectual disabilities may fall into this category. This paper seeks to consider aspects of guardianship, moral and legal implications and best practices for mental health professionals.

This practice piece reviews literature regarding informed consent, as well as pertinent issues in the professional literature regarding types of guardianship as well as the occurrence of “Lucid intervals.” Furthermore, literature from moral philosophy and current legal research was examined to fully provide readers with a grasp of the legal and ethical landscape of this issue.

The paper finds that treating consent as a one-time binary event is lacking in both practicality and nuance. Moral philosophy and issues regarding paternalism are raised, as well as practice approaches to assessment of capability and how to engage in therapy in meaningful ways.

This paper provides insight into providing dignity-affirming therapy with a population that is often not considered in the literature of mental health ethics. When it is considered, the suggestions are so vague as to be of limited use. This manuscript provides nuance and practical applications to be a therapist that promotes dignity in those who might have varying levels of capacity to consent.

Research within the fields of youth sexuality and safeguarding, and ethical governance more broadly, has traditionally prioritised risk aversion over the rights of young people to participate in and shape research. This excludes younger people from setting agendas and directly communicating their lived experience to those in power. The paper aims to discuss these issues.

This paper describes and draws upon findings from an innovative two year participatory action research study exploring sexual consent with young people through embedded and participatory research across seven sites. The project was designed with young people and practised non-traditional approaches to research consent. As well as co-producing research data, the findings highlight how methods of co-enquiry and being explicit about the research consent process enabled young people to develop competence that can be applied in other contexts.

The paper addresses ethical tensions between young people’s rights to participation and protection. It argues that alongside robust safeguarding procedures, there is equal need to develop robust participation and engagement strategies with an explicit focus on young people’s competence, agency and rights to participate regardless of the perceived sensitivity of the topic.

The paper concludes with proposals for future youth-centred research practice. These relate to research design, ethical governance processes around risk and sensitive topics, emphasis on working collaboratively with young people and practitioners, a greater focus on children and young people’s rights – including Gillick competence and fluid models of consent. In doing so, it presents an essential point of reference for those seeking to co-produce research with young people in the UK and beyond.

Researchers face many ethical challenges when conducting research with children. Ethical issues can be even more significant when researchers work with children from low-income urban settings in the Global South. This chapter presents reflections on research conducted with children aged 6–12 years old who live in Jakarta, Indonesia. Underpinned by the new sociology of childhood, the study was designed to gather these children’s perspectives on child-friendly public spaces in their neighbourhoods. A range of qualitative methods were used including child-led tours, drawings, observations and interviews. As part of the study, the authors developed and reflected on the use of story and storytelling to deliver the research information and obtain the children’s consent to participate. The authors’ experience demonstrates that story and storytelling supported children’s competence and engaged them in a meaningful informed consent process. This approach is especially relevant for children with low literacy skills and whose parents or caregivers may not be available to help children decide on their participation in research. The chapter concludes with recommendations for effectively approaching this ethical challenge in future social research with children from similar backgrounds.

Can children give their informed consent to participate in a research study, or can they only provide assent? This chapter explores this tricky question by drawing on three stages of a longitudinal ethnography within a multi-ethnic school in the north of England. Illustrative examples are used to show how the ability to give consent is not based on age alone, but rather on children’s experiences and confidence, the type of research conducted, and the researcher’s own expertise in communicating with children. The chapter provides examples of children’s active and ongoing negotiation of consent and through their choice to withdraw consent, ‘correct’ the researcher’s interpretations, actively produce their own written field notes and reflect on data collected as part of fieldwork. To facilitate consent, children were given time and space to familiarise themselves with the researcher and the study. Actively involving children in all stages of the study highlighted the importance of familiarisation and participation to the processes of informed consent to ensure children’s ongoing and meaningful involvement in the research.

The purpose of this paper is to develop an approach within the guidance of the Mental Capacity Act (2005) to meaningfully include people diagnosed with dementia (PDwD) in research endeavours.

As part of a broader study of self-authored narratives of care experiences, PDwD were involved in the development and implementation of a process method of consent, in which consent conversations were contextual, responsive and ongoing, and were audited with the use of field diaries.

Working within people’s relational contexts (i.e. care staff and family), eight participants with a range of dementia diagnoses and care needs made and verbally communicated research-related decisions. A desire to participate was consistently conveyed across research encounters, regardless of the extent of memory problems. Participants also demonstrated keen awareness of the links between memory problems, rights and inclusion, alongside a sense of personal identity and the capacities to clearly communicate this.

A process model of consent encouraged formal reflection upon ethical and pragmatic complexities, and is relevant to persons diagnosed with dementia making both care- and research-related decisions. Further work is needed to include people with a broader range of communication support needs.

This research demonstrates substantial possibilities for eliciting and responding to the views of people with dementia diagnoses (previously excluded from research). Results open opportunities for genuine long-term research and care partnerships with PDwD for practice, service and policy development.

Broker/dealers and investment managers that trade municipal securities on behalf of their clients are preparing for the shift from “end‐of‐the‐day batch” trade reporting to “real‐time” transaction reporting. In January 2005, the Municipal Securities Rulemaking Board (“MSRB”) will be initiating its Real‐time Transaction Reporting System (the “RTRS”). Amended MSRB Rule G‐14 now requires dealers to report transactions in municipal securities within 15 minutes of the time of trade execution, instead of by midnight on trade date. Rule G‐12(f) was amended to require municipal securities dealers to submit inter‐dealer transactions to the Central Comparison System within the same time frame. Investment advisers that engage in principal transactions with their clients or that are dually‐registered as, or affiliated with, broker/dealers that trade securities as principals on behalf of investment adviser clients generally must comply with the client notice and consent requirements set forth under Section 206(3) of the Investment Advisers Act of 1940 (the “Advisers Act”). In light of the acceleration of the MSRB’s trade reporting requirement, investment advisers should consider the extent to which these new requirements impact their obligation to notify clients of the fact that a principal trade is being processed and to secure each client’s approval prior to the completion of each transaction. At the very least, the implementation of the RTRS should prompt advisers to confirm, in fulfillment of their best execution obligations, that each broker/dealer that is executing their municipal securities trades complies with the new 15‐minute reporting window.

When a study involves human participants, researchers need to ensure their safety and protect their identities. How do potential participants know what they are agreeing to contribute, and how and why the research is being conducted? Informed consent describes the process and agreements that answer such questions. Conventional consent protocols focused on preresearch discussions between the researcher and the potential participant, resulting in a signed document that verified the agreement. In research conducted with, on, or through social media, there are fewer opportunities for conversational explanations of formal documents. Simply posting legalistic documents is ineffective because Internet users typically do not read such materials before verifying agreement. Researchers need to understand communities, contexts, and communication styles of target participants and settings in order to provide information in familiar, user-friendly ways. Based on a review of literature about informed consent, and a study of current practices used by companies that need to verify agreements online, practical research suggestions are offered. Qualitative researchers who want to collect data through active interactions with human participants will find these examples and recommendations of use when designing their studies.

A total of 63 parents whose children underwent urological surgery at a tertiary referral specialist paediatric hospital were surveyed at three times points: immediately after signing consent; two to three days after surgery (at discharge); and by telephone two to three weeks after discharge. The survey was to assess parents’ perceptions of the consent process and parental recall of information given about the surgical procedure and risks. Results demonstrated that despite the majority of parents being satisfied with the consent process, operation, aftercare and the subsequent health of their child, their recall of risk information was poor, with 60 per cent of parents unable to recall any explained risks of the operation. This study pre‐dated the introduction of the national consent policies and forms, but provides evidence which supports the need for this consistent approach across the NHS which emphasises the effective communication of risks and benefits in relation to proposed treatment.