One of the important determinants of development during the transition to adulthood is the undertaking of social roles characteristic of adults, also in the area of finishing formal education, which usually coincides with beginning fulltime employment. In the study discussed in this paper, it has been hypothesized that continuing full-time education above the age of 26, a phenomenon rarely observed in Poland, can be considered as an unpunctual event that may be connected with difficulties in the process of identity formation. (...) Relationships between identity dimensions and identity statuses, and age and educational context were analyzed. 693 individuals aged 19-35 took part in the study. The participants attended three types of educational institutions: full-time university studies, part-time university studies, and full-time post-secondary school. Among the students of full-time university studies predictable dependencies, also in respect of highlevels of indicators of identity crisis and a high frequency of diffused identity occurrence, were observed. Such dependencies were not found in the group of full-time post-secondary school students. (shrink)

Research concerned with human beings is always an interference of some kind, thus posing ethical dilemmas that need justification of procedures and methodologies. It is especially true in social work when facing mostly sensitive populations and sensitive issues. In the process of conducting a research on the emotional life histories of Israeli men who batter their partners, some serious ethical questions were evoked such as (a) Did the participants really give their consent? (b) What are the limits of the researcher-participants (...) relationship and who decides them? (c) For whom is the study beneficial? and (d) To what degree did the methodology fit with the participants? In this article, I discuss the Socratic idea of truth revealed through dialogue and the idea of reciprocity that was developed in Buber's (1949) ethics of dialogue and Habermas' (1990) communicative ethics. The 3 essential conclusions drawn from the ethical questions raised and the discussion of the thinkers that are mentioned previously are (a) dialogical methodology is ethically justified; (b) dynamic interactions give a more holistic perspective of the human nature, thus enriching the field; and (c) through dialogical methodology both researcher and participant profit from growth of knowledge, which is a key for empowerment and change. (shrink)

Qualitative research poses ethical issues and challenges unique to the study of human beings. In developing the interpersonal relationship that is critical to qualitative research, investigator and participant engage in a dialogic process that often evokes stories and memories that are remembered and reconstituted in ways that otherwise would not occur. Ethical issues are raised when this relationship not only provides qualitative research data, but also leads to some degree of therapeutic interaction for the participant. The purpose of (...) this article is to examine some of the controversies inherent in the researcher's dilemma when this occurs, set within the context of a nursing caring theory (Swanson), and the International Council of Nurses Code of ethics for nurses, which provides guidance on global nursing practice. (shrink)

Volume 20, Issue 5, June 2020, Page 31-33.

Boundaries between research and clinical practice blur in health research conducted by clinician-researchers. We describe a typology, of clinician-researcher dual-role tensions, with two overarching catalysts: acting as a clinical resource for patient-participants and forming researcher–participant relationships mirroring clinician–patient relationships. Using the typology as an analytic template we explored blurred boundaries in five illustrative, non-clinician, critical studies. Like clinician-researchers, critical researchers act in ways that promote rapport and relationships with their participants, which can blur boundaries. While clinician-researchers see tension between (...) clinician and researcher roles, we ask what roles critical researchers attempt to distinguish: ethically minded citizen and researcher, socially conscious community member and researcher, or friend and researcher? Anticipating catalysts of dual-role tension may assist critical researchers in planning and conducting robust research. (shrink)

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...) it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts. (shrink)

To give valid informed consent to participate in clinical research, potential participants should understand the risks, potential benefits, procedures, and alternatives. Potential participants also should understand that they are being invited to participate in research. Yet it is unclear what potential participants need to understand to satisfy this particular requirement. As a result, it is unclear what additional information investigators should disclose about the research; and it is also unclear when failures of understanding in this respect undermine the validity of (...) potential participants' informed consent. An analysis of individuals' interests suggests that potential participants need to understand three additional facts to understand that they are being invited to participate in research: 1) research contribution: those who enroll in the study will be contributing to a project designed to gather generalizable knowledge to benefit others in the future; 2) research relationship: the investigators will rely on participants' efforts to gather the generalizable knowledge to benefit others; and 3) research impact: the extent to which participating in the study will alter what participants do and what happens to them. (shrink)

Background: There is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the (...) KEMRI-Wellcome Trust programme in Kilifi, Kenya. Methods: Following an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits. Conclusions: Research staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability. (shrink)

History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault’s ideas (...) of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed — not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies. (shrink)

Researchers studying at-risk and socially disenfranchised child and adolescent populations are facing ethical dilemmas not previously encountered in the laboratory or the clinic. One such set of ethical challenges involves whether to: (a) share with guardians research derived information regarding participant risk, (b) provide participants with service referrals, or (c) report to local authorities problems uncovered during the course of investigation. The articles assembled for this special section address the complex issues of deciding if, when, and how to report or (...) provide referrals for research participants who are minors (referred to hereafter as minor research participants). This paper focuses on two factors underlying these decisions: the validity of risk estimates and meta-ethical positions on scientific responsibility. It is suggested that, before sharing information about minor research participants investigators should do the following: critically examine the diagnostic validity of developmental measures, include the scope and limitations of information sharing in informed consent procedures, and become familiar with state reporting laws. I discuss the impact of the traditionally accepted act utilitarian meta-ethical position on the investigator-participant relationship, and I recommend consideration of alternative positions as a step toward developing a research ethic of scientific responsibility and care. (shrink)

The use of brain imaging technology as a common tool of research has spawned concern and debate over how investigators should respond to incidental fndings discovered in the course of research. In this article, we argue that investigators have an obligation to respond to incidental fndings in view of their entering into a professional relationship with research participants in which they are granted privileged access to private information with potential relevance to participants' health. We discuss the scope and limits (...) of this professional obligation to respond to incidental fndings, bearing in mind that the relationship between investigators and research participants differs fundamentally from the doctor-patient relationship. (shrink)

BackgroundThere is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome (...) Trust programme in Kilifi, Kenya.MethodsFollowing an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits.ConclusionsResearch staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability. (shrink)

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...) it should be offered routinely. Different results may therefore require different decisions even within the same study. We argue that the threshold of clinical utility for disclosing a result in a research study should be lower than the threshold used for clinical use of the same result. The personal meaning of a result provides additional criteria for evaluation. Finally, the context of the study allows for a more nuanced analysis by addressing the investigators' capabilities for appropriate disclosure, participants' alternative access to the result, and their relationship with the investigators. This analysis shows that the same result may require different decisions in different contexts. (shrink)

This paper draws on research undertaken by the authors in community well woman clinics and hospital settings. Discussion focuses on issues around informed consent and participant observation. The authors are concerned to highlight the complexity of decision-making where researchers hold dual or multiple agendas, which are sometimes in conflict. Further situational factors which affect decision-making in research settings are explored. In particular, the complexity of gaining informed consent throughout the research process is addressed. The intention is not to point to (...) definitive resolutions to the problems posed, but rather to prompt debate about the often taken for granted meaning of 'informed' consent in relationship to participant observation. Cet article est basé sur les recherches que les auteurs avaient entrepris dans des polycliniques de santé de femmes et des hôpitaux. La discussion est concentré sur les thèmes du consentement informé et l'observation participante. Les auteurs sont inquiets de montrer la complexité du processus de se décider quant les chercheurs ont un rôle double ou multiple qui peut être en conflit. D'autres éléments qui influencent la prise de décisions dans des cadres de recherche sont aussi étudiés. En particulier, la compléxité de l'acquisition du consentement informé est adressée. L'intention n'est pas d'amener à une résolution définitive du problème posé, mais plutôt d'inviter á une discussion sur le sens (trop souvent pris pour réalité) du consentment 'informé' quant il s'agit de l'observation participante. Dieser Artikel stützt auf Forschungen, die die Autoren in Frauengesundheits-Kliniken und Spitälern unternommen hatten. Die Diskussion ist hier über die Themen Informierte Zustimmung und Mitteilende Beobachtung. Die Autoren befassen sich mit der Vielschichtigkeit der Entscheidungskräfte wenn die Forscher doppelte oder mehrfache Rollen haben, die manchmal im Konflikt sein können. Andere Faktoren, die die Entscheidungsmöglichkeit beeinflussen, sind auch untersucht. Besonders wird hier die Komplexität des erhalten von informierter Zustimmungung während des Forschungsprozesses angesprochen. Die Absicht ist nicht, eine definitive Lösung des Problems zu finden, sondern eher zu einer Debatte einzuladen über die zu oft als selbstverständlich betrachtete Bedeutung der 'informierten' Zustimmung auf der Ebene der mitteilenden Beobachtung. (shrink)

This article presents the ethical implications for social science research emerging from our study on interpersonal communication after a laryngectomy. By tracing the evolution of our approach through specific research experiences and participant feedback, we provide empirical support for a flexible, multidimensional, and relational understanding of key ethical concepts, such as vulnerability and the researcher-participant relationship. Our approach has shifted from institutionally imposed rigid categorizations and somewhat stereotypical treatment of both the research group and the researcher-participant relationship to (...) an emphasis on building relationships founded on mutual care and rapport. We argue that this revised perspective fosters ethical collaboration that is beneficial and secure for all parties involved, and we offer practical examples of its implementation in research practice. (shrink)

In this chapter we outline the need to develop ethical frameworks to guide research on the role of animal-orientated health, therapeutic, and service interventions. We discuss findings from our research on uses of animals in therapeutic settings and benefits of human–canine interactions for human health. These stories from the field reveal that current ethics review processes do not recognise the animal as an equal partner in the potential reciprocal benefits and risks of therapeutic human–animal relationships. We explore how these review (...) processes frame research on the relationships between humans and non-human animals and use the ethical review system of Aotearoa/New Zealand as an example. We propose an ethical framework that goes beyond animal welfare legislation and recognises a range of non-human animal capacities. (shrink)

Returning research results to participants is recognised as an obligation that researchers should always try to fulfil. But can we ascribe the same obligation to researchers who conduct genomics research producing only aggregated findings? And what about genomics research conducted in developing countries? This paper considers Beskow's et al. argument that aggregated findings should also be returned to research participants. This recommendation is examined in the context of genomics research conducted in developing countries. The risks and benefits of attempting such (...) an exercise are identified, and suggestions on ways to avoid some of the challenges are proposed. I argue that disseminating the findings of genomic research to participating communities should be seen as sharing knowledge rather than returning results. Calling the dissemination of aggregate, population level information returning results can be confusing and misleading as participants might expect to receive individual level information. Talking about sharing knowledge is a more appropriate way of expressing and communicating the outcome of population genomic research. Considering the knowledge produced by genomics research a worthwhile output that should be shared with the participants and approaching the exercise as a ‘sharing of knowledge’, could help mitigate the risks of unrealistic expectations and misunderstanding of findings, whilst promoting trusting and long lasting relationships with the participating communities. (shrink)

BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

Vulnerability is one of the least examined concepts in research ethics. Vulnerability was linked in the Belmont Report to questions of justice in the selection of subjects. Regulations and policy documents regarding the ethical conduct of research have focused on vulnerability in terms of limitations of the capacity to provide informed consent. Other interpretations of vulnerability have emphasized unequal power relationships between politically and economically disadvantaged groups and investigators or sponsors. So many groups are now considered to be vulnerable in (...) the context of research, particularly international research, that the concept has lost force. In addition, classifying groups as vulnerable not only stereotypes them, but also may not reliably protect many individuals from harm. Certain individuals require ongoing protections of the kind already established in law and regulation, but attention must also be focused on characteristics of the research protocol and environment that present ethical challenges. (shrink)

In this article, I provide a new account of the basis of medical researchers' ancillary care obligations. Ancillary care in medical research, or medical care that research participants need but that is not required for the validity or safety of a study or to redress research injuries, is a topic that has drawn increasing attention in research ethics over the last ten years. My view, the relationship-based approach, improves on the main existing theory, Richardson and Belsky's ‘partial-entrustment model’, by (...) avoiding its problematic restriction on the scope of health needs for which researchers could be obligated to provide ancillary care. Instead, it grounds ancillary care obligations in a wide range of morally relevant features of the researcher-participant relationship, including the level of engagement between researchers and participants, and weighs these factors against each other. I argue that the level of engagement, that is, the duration and intensity of interactions, between researchers and participants matters for ancillary care because of its connection to the meaningfulness of a relationship, and I suggest that other morally relevant features can be grounded in researchers' role obligations. (shrink)

In this article, I provide a new account of the basis of medical researchers' ancillary care obligations. Ancillary care in medical research, or medical care that research participants need but that is not required for the validity or safety of a study or to redress research injuries, is a topic that has drawn increasing attention in research ethics over the last ten years. My view, the relationship‐based approach, improves on the main existing theory, Richardson and Belsky's ‘partial‐entrustment model’, by (...) avoiding its problematic restriction on the scope of health needs for which researchers could be obligated to provide ancillary care. Instead, it grounds ancillary care obligations in a wide range of morally relevant features of the researcher‐participant relationship, including the level of engagement between researchers and participants, and weighs these factors against each other. I argue that the level of engagement, that is, the duration and intensity of interactions, between researchers and participants matters for ancillary care because of its connection to the meaningfulness of a relationship, and I suggest that other morally relevant features can be grounded in researchers' role obligations. (shrink)

Volume 20, Issue 10, October 2020, Page 72-74.

In “Flourish,” Martin Seligman maintained that the elements of well-being consist of “PERMA: positive emotion, engagement, relationships, meaning, and accomplishment.” Although the question of what constitutes human flourishing or psychological well-being has remained a topic of continued debate among scholars, it has recently been argued in the literature that a paradigmatic or prototypical case of human psychological well-being would largely manifest most or all of the aforementioned PERMA factors. Further, in “A Neuroscientific Perspective on Music Therapy,” Stefan Koelsch also suggested (...) that “Music therapy can have effects that improve the psychological and physiological health of individuals,” so it seems plausible that engaging in practices of music can positively contribute to one living a more optimally flourishing life with greater psychological well-being. However, recent studies on music practice and participation have not yet been reviewed and integrated under the PERMA framework from positive psychology to further explore and explicate this possibility. This article therefore contributes to extant work by reviewing recent research on psychological well-being and music to offer support for the claim that music practice and participation can positively contribute to one living a flourishing life by positively influencing their emotions, engagement, relationships, meaning, and accomplishment. (shrink)

Background: Many people participating in dementia research may lack capacity to give informed consent and the relationship between cognitive function and capacity remains unclear. Recent changes in the law reinforce the need for robust and reproducible methods of assessing capacity when recruiting people for research.Aims: To identify numbers of capacitous participants in a pragmatic randomised trial of dementia treatment; to assess characteristics associated with capacity; to describe a legally acceptable consent process for research.Methods: As part of a pragmatic randomised (...) controlled trial of Ginkgo biloba for mild-moderate dementia, we used a consenting algorithm that met the requirements of existing case law and the exigencies of the new Mental Capacity Act. We decided who had capacity to give informed consent for participation in the trial using this algorithm and sought predictors of capacity.Results: Most participants with mild-moderate dementia in this trial were unable to give informed consent according to the legal criteria. When adjusted for confounding, the Mini Mental State examination did not predict the presence of capacity.Conclusion: Cognitive testing alone is insufficient to assess the presence of capacity. Researchers and clinicians need to be aware of the challenging processes regarding capacity assessment. We outline a procedure which we believe meets the ethical and legal requirements. (shrink)

Background Informed consent is often cited as the “cornerstone” of research ethics. Its intent is that participants enter research voluntarily, with an understanding of what their participation entails. Despite agreement on the necessity to obtain informed consent in research, opinions vary on the threshold of disclosure necessary and the best method to obtain consent. We aimed to investigate Australian researchers’ views on, and their experiences with, obtaining informed consent. Methods Semi-structured interviews were conducted with 23 researchers from NSW institutions, working (...) in various fields of research. Interviews were analysed and coded to identify themes. Results Researchers reported that consent involved information disclosure, understanding and a voluntary decision. They emphasised the variability of consent interactions, which were dependent on potential participants’ abilities and interests, study complexity and context. All researchers reported providing written information to potential participants, yet questioned the readability and utility of this information. The majority reported using signed consent forms to ‘operationalise’ consent and reported little awareness of, and lack of support in implementing more dynamic informed consent procedures, such as verbal informed consent, that was fit for the purposes of their studies. Views on Human Research Ethics Committees varied. Some reported inconsistent, arduous inputs on the information form and consent process. Others expressed reliance on HRECs for guidance, viewing them as institutional safeguards. Conclusions This study highlights the importance of transparent relationships, both between researchers and participants, and between researchers and HRECs. Where the relationship with study participants was reported as more robust, researchers felt that they were better able to ensure participants made better, more informed decisions. Where the relationship with HRECs was reported as more robust, researchers were more likely to view them as institutional safeguards, rather than as bureaucratic hindrances. Conscientious and mindful researchers are paramount to ensuring the procedure accommodates individual requirements. This study advocates that when designing ethical informed consent practices, researchers should be integrated as autonomous players with a positive input on the process, rather than, in the worst case, predatory recruiters to be curtailed by information forms and oversight. (shrink)

School enterprise cooperation, as the basic school running form of applied undergraduate education, is an important way to cultivate applied talents. However, at present, the lack of motivation for enterprises to participate in school enterprise cooperation and the resulting problem of “school hot and enterprise cold” seriously limit the talent training quality in China’s application-oriented universities. There is an urgent need to explore the influencing factors and mechanisms of enterprises’ participation in school enterprise cooperation to improve the training quality of (...) applied talents. Taking Ajzen Theory of Planned Behavior as the theoretical framework, this study constructs the influencing factor model of enterprise participation in school enterprise cooperation from four aspects, namely, behavior attitude, subjective norms, perceived behavior control, and behavior intention. In this study, participants completed a questionnaire assessing their participation in school enterprise cooperation, which was analyzed by a structural equation model. The results show that the behavior attitude and perceived behavior control of enterprises have a significant positive impact on their intention to participate in school enterprise cooperation and then have a significant positive impact on the school enterprise cooperation behavior of enterprises. The behavior intention and perceived behavior control of enterprises have a significant positive impact on their participation in school enterprise cooperation. The policy environment has a significant regulatory effect on the relationship between the intention and behavior of enterprises’ participation in school enterprise cooperation. Therefore, from the perspective of enhancing the intention of enterprises to cooperate, colleges and universities should establish the awareness of win-win cooperation and meet the interest demands of enterprises in school enterprise cooperation in order to improve the behavior attitude and intention of enterprises. From the perspective of the formation conditions of school enterprise cooperation, with the help of industry associations, an information service platform for school enterprise cooperation should be built in order to eliminate the information islands between enterprises and universities. From the perspective of the needs of school enterprise cooperation environment, government departments should strengthen the policy support for school enterprise cooperation in order to eliminate the worries of enterprises’ participation in school enterprise cooperation. (shrink)

Aims and background: Little is known about how participants perceive prevention trials, particularly trials designed to prevent mental illness. This study examined participants’ motives for participating in a trial and their views of randomisation and the ability to withdraw from a randomised controlled trial for prevention of depression. Methods: Participants were older adults reporting elevated depression symptoms living in urban and regional locations in Australia who had consented to participate in an RCT of interventions to prevent depression. Participants rated their (...) agreement with various statements describing motivations for enrolment in the trial and opinions regarding randomisation and withdrawal. Results: The majority of participants expressed a triad of altruistic motivation for participation, relative lack of concern about randomisation and commitment to the trial. Certain subgroups of participants, such as women and those with higher depression scores, reported higher levels of concern about specific issues. Conclusions: The findings suggest that participants enrolled in prevention trials for mental illness are likely to hold positive attitudes towards research trials. The identification of relationships between key person factors and trial-related attitudes enabled profiling of participant groups, which can inform recruitment strategies and interactions of participants and research projects in future prevention trials. (shrink)

While the need to protect vulnerable research participants is universal, conceptual challenges with the notion of vulnerability may result in the under or over-protection of participants. Ethics review bodies making assumptions about who is vulnerable and in what circumstance can be viewed as paternalistic if they do not consider participant viewpoints. Our study focuses on participant vulnerability in Scholarship of Teaching and Learning (SoTL) research. We aim to illuminate students’ views on participant vulnerability to contribute to critical analysis of the (...) role and processes of ethics review. Additionally, we aim to highlight the importance of seeking the views of participant communities, especially in research environments beyond ethics review’s medical origins. Thirty-four students from a health-related faculty at a university in Aotearoa New Zealand, participated in five focus groups. Participants discussed factors affecting their potential participation in research drawing upon a series of vignettes based on examples of published SoTL projects. Themes, generated using reflexive thematic analysis, built a participant-informed picture of vulnerability. Findings indicate that students do not generally consider themselves vulnerable and instead consider participation in SoTL research through an agentic lens. Students expect that participation will be voluntary, not negatively impact their grades, and not single them out so that others could judge them. Our study also highlights the value students place on relationships with one another and teaching staff and the implications these have for SoTL research participation and future professional practice. This research challenges research ethics committees to think further about vulnerability in the context of SoTL whilst highlighting the importance of providing opportunities for research participants more broadly to explore and vocalize their views as members of participant communities. (shrink)

Background At the beginning of the coronavirus (Covid-19) pandemic, many non-Covid healthcare services were suspended. In April 2020, the Department of Health in England mandated that non-Covid services should resume, alongside the continuing pandemic response. This ‘resetting’ of healthcare services created a unique context in which it became critical to consider how ethical considerations did (and should) underpin decisions about integrating infection control measures into routine healthcare practices. We draw on data collected as part of the ‘NHS Reset Ethics’ project, (...) which explored the everyday ethical challenges of resetting England’s NHS maternity and paediatrics services during the pandemic. Methods Healthcare professionals and members of the public participated in interviews and focus group discussions. The qualitative methods are reported in detail elsewhere. The focus of this article is our use of Frith’s symbiotic empirical ethics methodology to work from our empirical findings towards the normative suggestion that clinical ethics should explicitly attend to the importance of relationships in clinical practice. This methodology uses a five-step approach to refine and develop ethical theory based on a naturalist account of ethics that sees practice and theory as symbiotically related. Results The Reset project data showed that changed working practices caused ethical challenges for healthcare professionals, and that infection prevention and control measures represented harmful barriers to the experience of receiving and offering care. For healthcare professionals, offering care as part of a relational interaction was an ethically important dimension of healthcare delivery. Conclusions Our findings suggest that foregrounding the importance of relationships across a hospital community will better promote the ethically important multi-directional expression of caring between healthcare professionals, patients, and their families. We offer two suggestions for making progress towards such a relational approach. First, that there is a change of emphasis in clinical ethics practice to explicitly acknowledge the importance of the relationships (including with their healthcare team) within which the patient is held. Second, that organisational decision-making should take into account the moral significance afforded to caring relationships by healthcare professionals, and the role such relationships can play in the negotiation of ethical challenges. (shrink)

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...) these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

Purpose: Discuss the relationship among college students’ media internalized pressure, social physique anxiety, weight control self-efficacy, and sports participation in providing a reference for promoting college students to develop healthy and confident living habits.Methods: Take Southwest University in China as the object, select the subjects by stratified random sampling, and process the data with SPSS19.0 and AMOS21.0 statistical software.Results: Media internalized pressure is positively correlated with social physique anxiety, weight control self-efficacy, and sports participation; social physique anxiety is significantly (...) positively correlated with weight control self-efficacy and sports participation, and weight control self-efficacy is significantly positively correlated with sports participation; media internalized pressure has a direct effect on sports participation, and social physique anxiety and weight control self-efficacy play significant mediating roles in the relationship between media internalized pressure and sports participation, respectively; the chained mediating force of social physique anxiety and weight control self-efficacy also reaches a significant level.Conclusion: Media internalized pressure can influence college students’ sports participation through the direct path as well as indirect paths such as social physique anxiety, the intermediary effect of weight control self-efficacy, and chained intermediary effect of social physique anxiety–weight control self-efficacy, and social physique anxiety is another key factor affecting college students’ sports participation except media internalized pressure. (shrink)

The Chinese economy has developed rapidly since the reform and opening up, but economic growth in Northeast China has declined dramatically after the 21st century. In this context, exploring the characteristics of economic and industrial fluctuations in the northeast of China and their relationship is beneficial to alleviating economic fluctuations and promoting stable economic development from the perspective of industrial development. The relationship between economic and industrial fluctuations in the three provinces of Northeast China was reexamined from the (...) angle of fluctuation components with the complete ensemble empirical mode decomposition with adaptive noise algorithm. The results obtained are as follows: In the three northeastern provinces of China, economic fluctuations were almost free from the influence of the primary industry, most affected by the secondary industry, and gradually influenced by the tertiary industry after the 21st century. Regarding the short-term business cycle of each province, economic development was the most stable when the market and government participated in the development of the secondary industry simultaneously. The midterm business cycle of Jilin Province was affected by the investment of equipment in secondary and tertiary industries, while that of Liaoning Province was affected by the investment of equipment in the secondary industry. Investment in the equipment of the secondary industry and the construction of secondary and tertiary industries was the key to maintaining the stability of long-term business cycle in Heilongjiang Province, and that in the construction of secondary and tertiary industries was the key to maintaining the stability of long-term business cycles in Jilin and Liaoning Provinces. (shrink)

PurposesThis paper aims to discuss the relationship between college students’ sports participation, school bullying, emotional intelligence and self-esteem. At the same time, it explores the intrinsic mechanisms of school bullying, in order to provide a reference for reducing bullying phenomenon among college students, and pave the way for college students to lead happy, healthy and confident lives.MethodsA total of 1,317 students from four universities in Southwest China were selected as subjects for this survey. They were selected by stratified random (...) sampling, and the data needed was obtained using a structured questionnaire. The data was subsequently processed with statistical software SPSS19.0 and AMOS21.0.Results Sports participation has a significant and positive correlation with emotional intelligence and self-esteem, likewise, it has a significant negative correlation with school bullying. Emotional intelligence has a marked positive correlation with self-esteem, at the same time it has a significant negative correlation with school bullying. In addition, self-esteem is strongly negative correlated with school bullying. Sports participation has a direct effect on school bullying. Emotional intelligence and self-esteem also play a significant mediating role between sports participation and school bullying, and the chain mediating force of emotional intelligence—self-esteem also reaches a significant level.ConclusionSports participation affects school bullying among college students not only directly but also indirectly, such as through emotional intelligence, the mediating role of self-esteem, and the chain mediating role of emotional intelligence to self-esteem. Apart from sports participation, emotional intelligence is another key factor that affects college students’ school bullying. Therefore, while attaching great importance to college students’ sport participation, schools should also provide courses aimed at developing students’ emotional intelligence. (shrink)

The ethical parameters of business research, especially that undertaken by doctoral candidates, are an under researched area. This exploratory research analyses research ethics in the business and management contexts as espoused in perceived low risk ethics applications from business doctoral candidates in light of the principles of Australian research ethics guidelines. Applications are also analysed in terms of power relationships, methods of access and informed consent, pressure to complete research expeditiously, conflict of interest and cross-cultural understandings. Findings suggest that research (...) design, personal relationships with participants and nuanced understandings of the contextual dimensions of risk may be of concern in the proposed research. However, a reflexive process also questions the cultural and other assumptions of both researchers and ethics administrators underlying these concerns. (shrink)

The nature of the relationship between clinical investigator and research participant continues to be contested. The related discussions have largely focused on the doctor-researcher dichotomy thought to permeate the work of a clinical investigator with research participants, whom in turn occupy two corresponding roles: patient and subject. This paper contributes to current debates on the topic by providing a voice to research participants, whose perspectives have been largely invisible. It draws on 42 in-depth interviews conducted in Ghana and South (...) Africa with respondents at different stages of involvement in clinical research, ranging from no experience in clinical research to enrollment in several clinical trials. The perspectives of all respondents were largely congruent and rooted in the common view that clinical research contributed to the improvement of local health. They went beyond the researcher/participant versus doctor/patient dichotomy, long established in research ethics, and preferred to view participants and investigators as partners working together to find ways to address local health needs. The conceptualization of investigator-participant relations as a partnership reinforced expectations of care, transparency and accountability, which were viewed as necessary expressions of mutuality and respect within equal collaborations. It is important to engage with these views in order to avoid antagonizing societal expectations and to build up long-term public trust, crucial for the continuous operation of clinical research. (shrink)

This paper evaluates the indoor temperature and thermal sensation inside the naturally ventilated small-medium size, historical Anadolchioi Mosque, built in Constanta, in 1870, for the Muslim minority living in Constanta. Are considered Friday prayers (Dhuhr). The methodology used for this assessment is related to the outdoor and indoor temperatures measurements, each Friday, in July, between 10 AM and 4 PM, due to the fact that in Constanta, Friday prayers (in July) starts between 1.20 PM and 1.23 PM (depending on the (...) sun position). The measurements will indicate that, although indoor temperature is slightly higher than the outdoor one, the average indoor temperature, for the considered period, is in the recommended thermal comfort temperature range, according to ASHRAE 2010. Also, the measured indoor air temperatures and predicted temperature for comfortable indoors- given by Humphreys formula, have been compared, in order to have an idea if the building is able to provide pleasant indoor temperatures. On the other hand, the methodology is focusing on ASHRAE seven point scale, when assessing the thermal sensation. In this respect, a survey regarding the thermal sensation of the occupants indicated that a low percent (5.55%) felt uncomfortable during the religious services. The majority of occupants (77.77%) felt comfortable and do not need a cooler environment. The results are in concordance with the participants’ age profiles: older persons preferring higher indoor temperatures. (shrink)

Experience marketing plays an important role in improving the quality and upgrading tourism services in cultural tourism cities and helps guide the planning and development, commodity design, and business management of cultural tourism products. However, the urgent problems that need to be solved are as follows: How does experiential marketing in cultural tourism cities affect tourists' consumption behavior? How to adjust consumption emotion in tourist experience and revisit intention? Starting from the experience needs of tourists, this study selected Jinan city, (...) represented by “Qilu culture,” as the research object; discussed the relationship between experiential marketing, consumption emotion, and revisit intention; and used a structural equation model to verify the relationship between the three. This study divided the perception of experiential marketing into four dimensions—sensory experience, action experience, emotional experience, and thinking experience, and divided tourists' revisit intention into two dimensions— “revisit” and “recommendation”. Totally, 305 tourists were randomly selected to participate in the questionnaire survey, and they came from 34 provinces in China. The results showed that cultural tourism cities can enhance tourists' positive consumption emotion through experiential marketing over time, and high-quality tourist consumption experience directly motivates tourists to revisit intention and then promotes tourists to go to cultural tourism cities for secondary consumption. These results suggest that cultural tourism cities should start from Maslow's hierarchy of needs theory, pay attention to the needs of tourists at different levels, and adopt effective experiential marketing strategies from tourism experience to improve the quality of tourists' travel experience and promote tourists' revisit intention. (shrink)

One of the important areas of study of religious psychology is to examine the reflection of worship in the spiritual life of individuals in the context of worship psychology. In this field survey, the relations between the level of meaning in life and hopelessness of individuals who performed the ʿUmra worship are examined. The study is conducted with 214 Turkish participants who performed ʿumra in Saudi Arabia. The collected data is analyzed by questionnaire technique. "Personal Information Form", " Meaning in (...) Life Questionnaire (MLQ)" and "Beck Hopelessness Scale" are used as data collection tools. The obtained data is analyzed in the SPSS 23.0 statistical program. One Sample t-Test, Pearson Moments Multiplication Correlation Analysis, Independent Sampling t-Test, One Way ANOVA and Tukey HSD tests are used to analyse the data. It is found that the research group's level of meaning in life above average; the level of hopelessness is below average significantly. There is a significant negative correlation between meaning in life and hopelessness, feelings about the future, loss of motivation, expectation about the future. There is a significant positive correlation between searched meaning and hopelessness and loss of motivation.Summary: Many religions have some types of worship involving visiting places considered as sacred and performing some rituals there. In Islam it is called ʿUmra, which is visiting the Kaʿba without being dependent on a certain time frame except for the pilgrimage month. There are certain rites to perform ʿumra, such as entering a state of iḥrām (ritual purity in which certain actions are not permissible), completing circumambulation, and saʿy (striving to do a certain act; walking) between the hills of al-Ṣafā and al-Marwa. ʿUmra worship is a comprehensive and versatile worship, which contains psychological, sociological, physical and financial characteristics.Studying the relationship between religious beliefs and practices, the religious rituals and their psychological effects and functions of ceremonies are the some essential research topics of Psychology of Religion. Existing research in this area usually reveals the existence of a positive relationship between the religious beliefs and practices and between meaning in life and hope. Individuals who believe in a religion can find a meaning and purpose in life through prayer and worship, and at the same time have more positive future expectation to endure the difficulties of life. Meaning and hope are intertwined, which complete each other. Hopelessness is closely related to depression and suicidal desire. There is a need to find meaning and purpose in life in order to hold on to life, and for looking to the future with confidence, and overcoming difficulties.It is known that people tend to be more religious and concentrating worship during periods of loss of meaning for various reasons. ʿUmra, which includes almost all type of worship, is a special worship, which has the potential to contribute to the individual's intense emotional life for gaining new awareness and developing different behaviours to cope with such difficulties. It is because the individual would have many experiences to see the cause of existence, the meaning of his/her life, and his/her future expectation during the ʿumra worship. Thus, he/she can overcome his/her hopelessness and loss of meaning and look to the situation from different perspectives. Therefore, in this study, the following questions are explored: Does ʿumra make a positive contribution to the psychological experience of the individuals, as expected? Does ʿumra has any effect on the level of loss of meaning and hopelessness that accompanies the psychological troubles? How does the demographic variables make difference in the level of meaning in life and hopelessness of individuals who perform ʿumra? In order to find answers to these questions, the relationship between the meaning of life - the hopelessness and the ʿumra was investigated. For this purpose, the meaning and hopelessness levels of the individuals who are performing ʿumra worship were measured by psychometric methods and the relations between them were analyzed. In addition, it has been tested whether there is a difference in the meaning in life and hopelessness according to demographic variables such as gender, marital status and educational status. 214 people aged between 18-82 years participated in the research. The survey data was collected from Turkish participants who perform ʿumra in the cities of Mecca and Medina in Saudi Arabia in May 2015. "Personal Information Form", " Meaning in Life Questionnaire (MLQ)" and "Beck Hopelessness Scale" were used as data collection tools. The obtained data were analyzed in the SPSS 23.0 statistical program. One Sample t-Test, Pearson Moments Multiplication Correlation Analysis, Independent Sampling t-Test, One Way ANOVA and Tukey HSD tests were used for the purpose of analysis of the data.The most important finding of the survey is meaning in life scores of individuals who are performing the ʿumra are above average (t = 20,50; p ˂ 0,01); and scores of hopelessness are below average significantly (t = -29,80; p ˂0,01). There is a significant negative correlation between presence of meaning subscale and hopelessness (r = -,288; p ˂ 0,01); and positive correlation between search for meaning subscale and hopelessness (r =,169; p ˂ 0,05) and loss of motivation (r =,285; p ˂ 0,01). The findings show that ʿumra can affect the meaning in life positively and the hopelessness negatively. There was no significant difference between the meaning in life scores and education level and gender variable (p ˃ 0,05). As the level of education increases, hopelessness scores decrease significantly (F = 2, 627; p ˂ 0,05). Hopelessness scores show a significant difference according to gender (t = -2,708; p ˂ 0,01). Men's hopelessness levels are significantly higher than women’s. Moreover, the meaning in life of married individuals is significantly higher than single individuals (F = 3,859; p ˂ 0,05). As the age and developmental stages progressed, meaning in life (F = 7,274; p ˂ 0,01) and hopelessness scores (F = 8,119; p ˂ 0,01) significantly increased.ʿUmra may have a rapid and intensive effect on the psychology of the individual and his/her sense of world. Relevant studies in the literature also imply such results. Since ʿumra is both a journey and a collective worship, it involves many types of worship, such as praying, reading scripture, repentance and so on. The findings of this study were discussed with reference to the findings about pilgrimage and the findings of study of meaning in life and hopelessness in different samples. On the other hand, the conditions in which the data collected, the study group chosen, the instruments and techniques used for this research constitute the limitations of the present study. However, the time period in which the worship was practiced and reaching the participants in these places of worship, and the measurement of the level meaning in life and hopelessness associated with their worship of ʿumra indicates the importance and originality of this research. The results can be used in other research projects. Studies on the different psychological effects of ʿumra worship can be enriched by longitudinal investigations. (shrink)

ABSTRACT Does the fact that deception is widely practised – even though there is a general prohibition against deception – provide insight into the ethics of deceptive methods in research, especially for social‐behavioral research? I answer in the affirmative. The ubiquity of deception argument, as I will call it, points to the need for a concrete and nuanced understanding of the variety of deceptive practices, and thus promises an alternative route of analysis for why some deception may be permissible in (...) social‐behavioral research. As an alternative argument it also promises to break the stalemate that emerges in debates on the ethics of deceptive methods in social‐behavioral research. In the current paper I (1) motivate and articulate the ubiquity argument in order to clarify the significance of ubiquity and discharge some initial objections. Then, on the recommendations of the ubiquity argument, I (2) highlight the importance of interpersonal relationships for understanding the ethics of deception. Following this insight I (3) provide an analysis of several features of the researcher‐participant relationship relevant to the understanding of the ethics of deception in research. I then (4) conclude the argument with some recommendations for the ethical use of deceptive methods in social‐behavioral research. (shrink)

The purpose of this study was to identify relationship between leisure constraint negotiations and leisure activity participation through meta-analysis within the Korean context. Through this study, the inconsistent research results of previous studies are explained by comprehensively clarifying the relationship between the two variables and identifying a third variable that controls the relationship. The efforts of this project are expected to provide useful data that can be used for future research and to seek ways of increasing participation (...) in leisure activities. In order to achieve the purpose of this study, the research questions set in this study are as follows. First, what is the magnitude of the effect of the correlation coefficient between leisure constraint negotiations and leisure participation? Second, what are the variables that control the relationship between leisure constraint negotiations and leisure participation? Materials were collected by utilizing Research Information Sharing Service, DBpia, Korean studies Information Service System, and Korea Citation Index. Finally, 20 pieces of research materials were selected with a total of 6,843 participants. The conclusions drawn from the research questions set in this study are as follows. First, leisure constraint negotiations and leisure participation are in a static relationship, and their level is considerable. In other words, efforts to overcome leisure constraints increase participation in leisure activities. Second, gender, age, and type of active leisure activities are major variables that control the relationship between leisure constraint negotiations and leisure participation. Finally, the limitation of this study and future research orientation were discussed. (shrink)

This study explored perceived benefits and risks of participation in HIV research among 33 female sex workers in Tecún Umán, Guatemala. Stigma associated with sex work and HIV was a critical barrier to research participation. Key benefits of participation included access to HIV/sti prevention and testing, as well as positive and trusting relationships between sex workers and research teams. Control exerted by managers had mixed influences on perceived research risks and benefits. Results underscore the critical need for HIV investigators to (...) develop population-tailored procedures to reduce stigma; engage managers; and reinforce trusting, reciprocal relationships between sex work communities and researchers. (shrink)

This article explores methodological issues central to the undertaking of joint Palestinian-Israeli research, work that is impacted by the violent conflict between the two peoples. Four issues are discussed: (a) collaborating under conflict, that is, how the conflict impacts relations between the researchers on either side of the border, (b) issues of power and equality, as they impact the research process, (c) relationships with participants, that is, how the conflict influences relations between the researcher and the research participants, and (d) (...) rethinking standards, that is, whether the normative standards of research quality are relevant for Palestinian-Israeli collaborative research. The article presents examples from joint research and offers preliminary ideas for dealing with these methodological issues. (shrink)

Lower levels of news use are generally understood to be associated with less political engagement among citizens. But while some people simply have a low preference for news, others avoid the news intentionally. So far little is known about the relationship between active news avoidance and civic engagement in society, a void this study has set out to fill. Based on a four-wave general population panel survey in the Netherlands, conducted between April and July 2020 (N = 1,084) during (...) a crisis situation, this research-in-brief investigates the development of news avoidance and pro-social civic engagement over time. Results suggest that higher news topic avoidance results in higher levels of civic engagement. The study discusses different explanations for why less news can mean more engagement. (shrink)

In order to consider how best to address relationship concerns with potential research participants arising in this study, we will first describe unique features...

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a (...) lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. -/- Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. -/- Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. -/- Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue. (shrink)

Research represents an avenue through which patients can contribute to the knowledge base surrounding their condition. However, persons with dementia cannot legally consent to participation in most scientific research. One possible avenue to preserve patient autonomy in the sphere of research is through an advance planning document. Scholars of medicine, ethics, and law have largely approached this topic from a theoretical angle, compelling the authors to develop and implement a tangible research-specific advance planning tool. In order to inform the creation (...) of this novel legal instrument, the present study leveraged semistructured telephone interviews with cognitively intact older adults in the Upper Connecticut River Valley region of New Hampshire. Participants were prompted to reflect on their attitudes toward participation in scientific research, should they develop dementia. They were also asked to consider the possibility of incorporating research into their advance planning regime, their preferred format for a research-specific advance planning tool, and the potential relationship between an advance planning tool and their surrogate decision maker in the context of research participation. Qualitative analysis was employed to extract themes from interview responses, revealing a pervasive desire for an advance planning tool that embraces specificity, flexibility, practicality, and the integral role of the surrogate decision maker. Ultimately, through collaboration with physicians and an elder law attorney in the region, these findings were translated into a research-specific advance planning component within the Dartmouth Dementia Directive. (shrink)

The study reports on the results of an empirical investigation of the education and recruitment processes used in HIV vaccine trials conducted in South Africa. Interviews were conducted with 21 key informants involved in HIV vaccine research in South Africa and three focus groups of community advisory board members. Data analysis identified seven major themes on the relationship between education and recruitment: the process of recruitment, the combined dual role of educators and recruiters, conflicts perceived by field staff, pressure (...) to achieve recruitment targets, problems in achieving comprehension, accountability and education as capacity building. The results raise ethical concerns about the adequacy of current informed consent processes in these settings. The study findings bear directly on current debates about issues of exploitation and the scope of moral responsibilities of researchers and funding agencies to assure that HIV clinical prevention research is conducted ethically. (shrink)