Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited (...) review of socio-empirical research on patients’ and healthy research participants’ experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent. (shrink)

The idea that payment for research participation can be coercive appears widespread among research ethics committee members, researchers, and regulatory bodies. Yet analysis of the concept of coercion by philosophers and bioethicists has mostly concluded that payment does not coerce, because coercion necessarily involves threats, not offers. In this article we aim to resolve this disagreement by distinguishing between two distinct but overlapping concepts of coercion. Consent-undermining coercion marks out certain actions as impermissible and certain agreements as unenforceable. (...) By contrast, coercion as subjection indicates a way in which someone’s interests can be partially set back in virtue of being subject to another’s foreign will. While offers of payment do not normally constitute consent-undermining coercion, they do sometimes constitute coercion as subjection. We offer an analysis of coercion as subjection and propose three possible practical responses to worries about the coerciveness of payment. (shrink)

Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. (...) The standard view of the conditions for valid consent therefore implies that these people have failed to give valid consent to research participation. In this paper we argue that the standard view is false. The primary function of the requirement that researchers disclose information about a study is the avoidance of illegitimate control over someone’s consent decision, which is a form of fraud.We derive the content and manner of appropriate disclosure by analysing the ways in which the manipulation of information can invalidate consent. Our analysis shows that the informational requirements for valid consent are conceptually distinct and thus unlikely to have identical contents. This implies that consent can be valid when not everything that ought to be disclosed by the person asking for consent is understood by the person who proffers it. (shrink)

In this paper we analyze the non-coercive ways in which researchers can use knowledge about the decision-making tendencies of potential participants in order to motivate them to consent to research enrollment. We identify which modes of influence preserve respect for participants’ autonomy and which disrespect autonomy, and apply the umbrella term of manipulation to the latter. We then apply our analysis to a series of cases adapted from the experiences of clinical researchers in order to develop a (...) framework for thinking through the ethics of manipulating people into research participation. All manipulation disrespects autonomy and is therefore pro tanto wrong. However, only deceptive manipulation invalidates the consent that results from it. Use of the other forms of manipulation can be permissible, but only if the outcome of using manipulation is sufficiently good and if the research cannot be carried out using ethically preferable means to obtain consent. (shrink)

In a recent letter, Dillion et. al (2023) make various suggestions regarding the idea of artificially intelligent systems, such as large language models, replacing human subjects in empirical moral psychology. We argue that human subjects are in various ways indispensable.

Volume 20, Issue 8, August 2020, Page W8-W11.

The current prevailing view is that participation in biomedical research is above and beyond the call of duty. While some commentators have offered reasons against this, we propose a novel public goods argument for an obligation to participate in biomedical research. Biomedical knowledge is a public good, available to any individual even if that individual does not contribute to it. Participation in research is a critical way to support an important public good. Consequently, all have a duty (...) to participate. The current social norm is that individuals participate only if they have a good reason to do so. The public goods argument implies that individuals should participate unless they have a good reason not to. Such a shift would be of great aid to the progress of biomedical research, eventually making society significantly healthier and longer lived. (shrink)

The fourth amendment to the German Medicinal Products Act (Arzneimittelgesetz) states that nontherapeutic research in incompetent populations is permissible under the condition that potential research participants expressly declare their wish to participate in scientific research in an advance research directive. This article explores the implementation of advance research directives in Germany against the background of the international legal and ethical framework for biomedical research. In particular, it addresses a practical problem that arises from (...) the disclosure requirement for advance research directives. We show that, if the disclosure standard for advance research directives is set at a token level, nontherapeutic research in incompetent populations becomes practically impossible. To resolve this issue, we suggest the disclosure standard be set at a type level. (shrink)

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some (...) studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency. (shrink)

The principles which can justify significantly risky nontherapeutic research on children are a combination of: (1) direct or indirect benefits to the child participants now and/or in the future (and these benefits need not necessarily be medical, they can also be socioeconomic or otherwise non-medical); (2) a high standard of informed consent that fundamentally focuses on the child participant's understanding (and capacity for understanding) of relevant features of informed consent. Researchers, parents and guardians, as well as child (...) class='Hi'>participants themselves, have different roles and obligations towards one another. This is not an issue of seeking to find excuses to expose children to risk, but rather an issue of seeking the least risky and most ethical way to do so if and when required by public health emergencies or to achieve directly beneficial scientific breakthroughs. (shrink)

In this ambitious book composed of the author’s published articles, he develops practical and theoretical frameworks for social work in disability issues. He explores practical strategies for promoting social and economic participation of disabled people from the perspective of developmental social work, whilst examining the situation of their socioeconomic participation in rural Sri Lanka. Based on these theoretical and practical frameworks, together with policy analysis of community-based rehabilitation (CBR), the field research was undertaken collaboratively with local stakeholders in three (...) districts. The findings suggest that developmental social work practices, including an indigenous approach, social investment, and a multi-sectoral approach, could address the vicious cycle of inadequate education, poverty, and marginalisation. This book also explores the implications of these findings for policy and practice in other contexts. (shrink)

Background: The internationalization of clinical studies requires a shared understanding of the fundamental ethical values guiding clinical studies. It is important that these values are not only embraced at the legal level but also adopted by clinicians themselves during clinical studies. Objective: Our goal is to provide an insight on how clinicians in Germany and Poland perceive and identify the different ethical issues regarding informed consent in clinical studies. Methods: To gain an understanding of how clinicians view clinical studies in (...) the countries they work in, we carried out semi-structured problem-centered interviews per telephone in Poland (n = 6) and Germany (n = 6). Our interviewees concentrated on three main topics: an appraisal of the normative framework, challenges in the information process and the protection of all participants in clinical studies. Results: Clinicians generally supported the normative framework, even though they considered it quite complex. In the two study countries, a widely noted dilemma in the information process was whether to overburden participants with extensive information or risking leaving out important facts. Clinicians were ready to exclude larger population groups from participating in clinical studies when the information process could not be carried out with standard procedures or when their inclusion was ethically sensitive. Conclusion: Clinicians need to gain a better understanding of the consequences of excluding larger population groups form participating in clinical studies. They should seek assistance in improving the information process for the inclusion of underrepresented groups in clinical studies. (shrink)

Providing heroin to heroin addicts taking part in medical trials to assess the effectiveness of the drug as a treatment alternative, breaches ethical research standards, some ethicists maintain. Heroin addicts, they say, are unable to consent voluntarily to take part in these trials. Other ethicists disagree. In our view, both sides of the debate have an inadequate understanding of voluntariness. In this article we therefore offer a fuller conception, one which allows for a more flexible, case-to-case approach in which (...) some heroin addicts are considered capable of consenting voluntarily, others not. An advantage of this approach, it is argued, is that it provides a safety net to minimize the risk of inflicting harm on trial participants. (shrink)

The current ethical and regulatory framework for research is often charged with burdening investigators and impeding socially valuable research. To address these concerns, a growing number of research ethicists argue that informed consent should be adapted to the risks of research participation. This would require less rigorous consent standards in low-risk research than in high-risk research. However, the current discussion is restricted to cases of research in which the risks of research participation (...) are outweighed by the potential clinical benefits for the individual research participant. Furthermore, current proposals do not address the worry that risk-adapted informed consent may result in enrolling participants into research without their autonomous authorization. In this paper, we show how the standard view of informed consent – consent as autonomous authorization – can be adapted to risk even when the research does not have a favourable risk-benefit profile for the participant. Our argument has two important implications: first, it implies that current and proposed consent standards are not adequately calibrated to risk and, second, that consent standards also need to be adapted to factors other than risk. (shrink)

This study evaluated the relationship between participative management practices and institutional goal attainment among Nigerian universities, with University of Calabar in focus. To achieve the purpose of the study, two research questions and two null hypotheses where developed to guide the study. The descriptive survey research design was adopted for the study. The population and sample of the study was one hundred and twenty-two (122) deans of faculties and heads of departments using the census approach. An instrument titled (...) Participative Management Practices and Institutional Goal Attainment Questionnaire (PMPIGAQ) was used for data collection. The instrument was validated by three experts in Higher Education Administration and Measurement and Evaluation. The instrument yielded Cronbach’s reliability alpha ranging from α=.75-86. Data were collected and analyzed through mean, Standard deviation, Pearson Product Moment Correlation Analysis. The results of the study showed that there is a significant relationship between participation in decision making, participation in planning and institutional goal attainment. It was recommended that managers of universities should promote participatory management practices to enhance high morale, commitment and enthusiasm among staff in the pursuit and attainment of institutional goals. (shrink)

Faculty members’ beliefs in their ability to conduct research and publish research outputs are expected to impact research productivity directly. Thus, the study described the research self-efficacy and productivity among faculty members, their research self-efficacy influence on productivity, and their challenges in research writing and publication. The study utilized a mixed-method sequential explanatory research design, with 36 and nine faculty member-participants for the quantitative and qualitative study. For the quantitative study, the faculty (...) members’ research self-efficacy was ascertained using a validated questionnaire, and their research productivity was determined through a researcher-made survey instrument. Meanwhile, the qualitative study focused on the faculty members’ research writing and publication challenges, which were gathered through focus group discussions. Results showed average research self-efficacy and low research productivity among faculty members. Research self-efficacy significantly predicted research productivity regarding refereed and indexed publications, paper presentations, and bibliometrics. Further, themed findings showed that the faculty members encountered challenges such as a lack of research exposure, time constraints, lack of institutional support, and publication pressure. The study may serve as an inference for higher education institutions in designing faculty development plans and in-service training programs to capacitate its members. (shrink)

Care after research is for participants after they have finished the study. Often it is NHS-provided healthcare for the medical condition that the study addresses. Sometimes it includes the study intervention, whether funded and supplied by the study sponsor, NHS or other party. The NHS has the primary responsibility for care after research. However, researchers are responsible at least for explaining and justifying what will happen to participants once they have finished. RECs are responsible for considering (...) the arrangements. There are ethical and practical issues, in particular when participants may wish to continue on the study intervention after the study. There are also various guidelines and legislation. This document presents a framework of questions to help NHS RECs and their applicants. Information on this document’s development is here. (shrink)

What does it take to see how autistic people participate in social interactions? And what does it take to support and invite more participation? Western medicine and cognitive science tend to think of autism mainly in terms of social and communicative deficits. But research shows that autistic people can interact with a skill and sophistication that are hard to see when starting from a deficit idea. Research also shows that not only autistic people, but also their non-autistic interaction (...) partners can have difficulties interacting with each other. To do justice to these findings, we need a different approach to autistic interactions—one that helps everyone see, invite, and support better participation. I introduce such an approach, based on the enactive theory of participatory sense-making and supported by insights from indigenous epistemologies. This approach helps counteract the homogenising tendencies of the “global mental health” movement, which attempts to erase rather than recognise difference, and often precludes respectful engagements. Based in the lived experiences of people in their socio-cultural-material and interactive contexts, I put forward an engaged—even engaging—epistemology for understanding how we interact across difference. From this perspective, we see participatory sense-making at work across the scientific, diagnostic, therapeutic, and everyday interactions of autistic and non-autistic people, and how everyone can invite and support more of it. (shrink)

Interactions are important in establishing deep and meaningful learning experiences for learners in a distance education setup. Of all the activities in an online classroom, the discussion forum proved to be the one that had the most interactions. A discussion forum lets learners interact with the content, peers, and teachers. Participation in these learning activities is one important factor. The more the learners participate, the more they learn. This paper uses the researcher’s experience in determining what participation is in an (...) online learning experience. After reviewing the experience, participation in a discussion forum is defined as a self-induced connection to the learning community to receive and share knowledge to bring a deeper understanding of a certain theory or phenomenon.” There are conditions for a behavior or action that can be considered participation. The more conditions the behavior met, the higher the level of participation it led. The conditions are the learner analyzes an abstract theory or concept and relates it to practice or experience; the learner views other people’s perspectives regarding the subject and synthesizes a stronger and deeper understanding of the acquired knowledge; the learner communicates the acquired understanding of a certain subject that induces a validation or further inquiry; lastly, the learner constructed a train of premeditated discourse that leads to the understanding of a certain subject. (shrink)

Background: In prevalence studies of sexually transmitted infections (STIs), investigators often provide syndromic management for symptomatic participants, but may not provide specific treatment for asymptomatic individuals with positive laboratory test results due to the delays between sample collection and availability of results as well as logistical constraints in recontacting study participants. Methods: To characterize the extent of this issue, 80 prevalence studies from the World Health Organization’s Report on global sexually transmitted infection surveillance, 2018, were reviewed. Studies were (...) classified as to whether clinically relevant positive results were returned or if this was not specified. Results: More than half (56%) of the cited studies did not specify if participants were notified of clinically relevant positive STI test results. The percentages were similar for low- and middle-income country populations (57%) and high-income country populations (53%). Conclusions: The absence of documentation of the provision of test results raises the possibility that in some instances, results may not have been communicated, with potential negative effects for participants, their sexual partners, and newborns. From an ethical perspective, clinically relevant results should be returned to study participants and treating clinicians in a timely fashion to ensure appropriate management of identified infections. Study authors should document if they returned test results to study participants and report on numbers lost to follow-up. (shrink)

The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is (...) not radical, it provides a useful way to determine how the right should be applied in various cases. (shrink)

Recent debates in psychopathy studies have articulated concerns about false-positives in assessment and research sampling. These are pressing concerns for research progress, since scientific quality depends on sample quality, that is, if we wish to study psychopathy we must be certain that the individuals we study are, in fact, psychopaths. Thus, if conventional assessment tools yield substantial false-positives, this would explain why central research is laden with discrepancies and nonreplicable findings. This paper draws on moral psychology in (...) order to develop tentative theory-driven exclusion criteria applicable in research sampling. Implementing standardized procedures to discriminate between research participants has the potential to yield more homogenous and discrete samples, a vital prerequisite for research progress in etiology, epidemiology, and treatment strategies. (shrink)

Social Science relies heavily on the use of ethnography and other forms of qualitative study, research that may place the researcher as well as their subjects at significant ethical risk. In Canada, Research Ethics Boards are responsible for protecting research participants during these studies. But how much ethical oversight ought the Research Ethics Boards be entitled to? Are they repressing valuable qualitative studies or are the Social Science simply rebelling against new but appropriate control mechanisms (...) not formerly applied to them? This paper evaluates how well the changes made in the TCPS 2 respond to the concerns of Social Scientists as presented in the literature. (shrink)

Recently, research capability has received an overwhelming and remarkable interest among academics and practitioners. This is timely since the Department of Education had institutionalized research and encouraged teachers to engage in it to support evidence-based practice, decision-making, policy, and program development. On these premises, a study was carried out to assess the research capability of public teachers in Malaybalay City, determine its correlates and determinants. It utilized descriptive, correlational, and explanatory designs. It administered survey questionnaires to 92 (...) participants. Data were analyzed using descriptive and inferential statistics. The results revealed that teachers were slightly capable of conducting research and having neutral attitudes toward it, motivated to write research, had a high level of difficulties in research processes, and moderately capable of action planning. They also show evidence of potential in mentoring. Further, mentoring and action planning skills, motivation to write research, attitudes toward research, and the number of studies completed by teachers were the correlates of their research capability at different magnitudes of the relationship. Notably, the research capability of teachers had a low, negative but significant relationship with their age and accumulated years of service. Thus, this capability deteriorates as they age and accumulate years of service. The motivation to write research, the number of studies completed, and age were the determinants of research capability. It was concluded that research capability can be determined and predicted by how motivated teachers are to write research, how productive they are in research, and how young they are when they engage in this rigorous endeavor. The study identified and recommended topics for continuing professional development. (shrink)

Most medical research and a substantial amount of non-medical research, especially that involving human participants, is governed by some kind of research ethics committee (REC) following the recommendations of the Declaration of Helsinki for the protection of human participants. The role of RECs is usually seen as twofold: firstly, to make some kind of calculation of the risks and benefits of the proposed research, and secondly, to ensure that participants give informed consent. The (...) extent to which the role of the REC includes the former is not uncontroversial. Indeed, the most prevalent debate on the role of RECs sees liberals and strong paternalists arguing over the importance of informed consent given by competent agents versus the significance of making benevolent decisions on behalf of others. On the one hand, liberals argue for the rights of competent adults to decide for themselves the kinds and extents of risks to which they wish to expose themselves. On the other hand, proponents of strong paternalism raise concerns about the likelihood of participants being able to truly understand the complex data involved in research. They support a role for RECs in which they exercise duties of benevolence towards patients and participants by limiting the extent to which they can be exposed to significant, permanent and irreversible harms. In this paper, we will argue that when it comes to decisions about risk it is neither possible nor desirable for RECs to adopt either role. (shrink)

The ontological turn or ontologically-oriented approach accentuates the key importance of intercultural variability in ontologies. Different ontologies produce different ways of experiencing the world, and therefore, participation in alternative realities is very desirable in anthropological and ethnological investigation. Just the participation in alternative realities itself enables researchers to experience alterity and ontoconceptual differences. The present study aims to demonstrate the power of ritual in alteration, and to show how co-experiencing rituals serves to uncover ontological categories and relations. We argue that (...) the experience of alterity in everyday activities is of a different quality than the experience of alterity when participating in rituals. Transcendent reality is accessible during rituals. It serves as source of potentialities. These potentialities are actualized in ritual and entangled with people's everyday existence. Furthermore, we argue that participating in ritual enables the researcher to step into the alterity of alterity, and to get nearer to the origins of ontologies. Ritual participation also invokes the extension of consciousness and provides a collectively shared cognition, opening up the ontological dimension and enabling access to existential experiences and concepts. In these settings, relations between people and the world can be recognized and investigated. (shrink)

Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research (...) class='Hi'>participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper. (shrink)

In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: in health research priority setting when research funders, policy-makers, or researchers decide between alternative research projects; and in evaluating the (...) ethics of proposed research proposals when research ethics committees assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations. (shrink)

Trials with highly unfavourable risk–benefit ratios for participants, like HIV cure trials, raise questions about the quality of the consent of research participants. Why, it may be asked, would a person with HIV who is doing well on antiretroviral therapy be willing to jeopardise his health by enrolling in such a trial? We distinguish three concerns: first, how information is communicated to potential participants; second, participants’ motivations for enrolling in potentially high risk research with (...) no prospect of direct benefit; and third, participants’ understanding of the details of the trials in which they enrol. We argue that the communication concern is relevant to the validity of informed consent and the quality of decision making, that the motivation concern does not identify a genuine problem with either the validity of consent or the quality of decision making and that the understanding concern may not be relevant to the validity of consent but is relevant to the quality of decision making. In doing so, we derive guidance points for researchers recruiting and enrolling participants into their HIV cure trials, as well as the research ethics committees reviewing proposed studies. (shrink)

This project considers whether and how research ethics can contribute to the provision of cost-effective medical interventions. Clinical research ethics represents an underexplored context for the promotion of cost-effectiveness. In particular, although scholars have recently argued that research on less-expensive, less-effective interventions can be ethical, there has been little or no discussion of whether ethical considerations justify curtailing research on more expensive, more effective interventions. Yet considering cost-effectiveness at the research stage can help ensure that (...) scarce resources such as tissue samples or limited subject popula- tions are employed where they do the most good; can support parallel efforts by providers and insurers to promote cost-effectiveness; and can ensure that research has social value and benefits subjects. I discuss and rebut potential objections to the consideration of cost-effectiveness in research, including the difficulty of predicting effectiveness and cost at the research stage, concerns about limitations in cost-effectiveness analysis, and worries about overly limiting researchers’ freedom. I then consider the advantages and disadvantages of having certain participants in the research enterprise, including IRBs, advisory committees, sponsors, investigators, and subjects, consider cost-effectiveness. The project concludes by qualifiedly endorsing the consideration of cost-effectiveness at the research stage. While incorporating cost-effectiveness considerations into the ethical evaluation of human subjects research will not on its own ensure that the health care system realizes cost-effectiveness goals, doing so nonetheless represents an important part of a broader effort to control rising medical costs. (shrink)

This article examines when deceptive withholding of information is ethically acceptable in research. The first half analyses the concept of deception. We argue that there are two types of accounts of deception: normative and non-normative, and argue that non-normative accounts are preferable. The second half of the article argues that the relevant ethical question which ethics committees should focus on is not whether the person from whom the information is withheld will be deceived, but rather on the reasonableness of (...) withholding the information from the person who is deceived. We further argue that the reasonableness of withholding information is dependent on the context. The last section examines how the context of research should shape our judgements about the circumstances in which withholding information from research participants is ethically acceptable. We argue that some important features of research make it more difficult to justify withholding information in the context of research than elsewhere. (shrink)

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)

In the United States, the Presidential Commission for the Study of Bioethical Issues has proposed deliberative democracy as an approach for dealing with ethical issues surrounding synthetic biology. Deliberative democracy might similarly help us as we update the regulation of human subjects research. This paper considers how the values that deliberative democratic engagement aims to realize can be realized in a human subjects research context. Deliberative democracy is characterized by an ongoing exchange of ideas between participants, and (...) an effort to justify decisions that bind participants by appeal to reasons that the participants can understand and share. Even when unanimous agreement is not reached, the active participation of everyone along with the requirement that reasons be made accessible enhances the legitimacy of the ultimate outcome. Importantly, deliberative democratic structures avoid strict hierarchies and place participants, as much as possible, in the position of equals. Human subjects research has some features that may make deliberative democratic principles seem initially unappealing. For one, there are asymmetries in knowledge between expert researchers conducting the research and participants in the research process. For another, statistical validity is made easiest by research paradigms that produce standardized, quantitative data, which can be difficult to achieve if research participants are given the power to deliberatively reshape the research design as it progresses. These and other problems have tended to produce a human subjects research process where subjects do not actively participate in shaping research, but rather consent to a predefined set of interventions designed by expert researchers and vetted by Institutional Review Boards (IRBs). In this paper, I suggest some ways in which human subjects research could do more to realize deliberative democratic values, and, in particular, how a revised Common Rule might help to realize these values. First, research participants could be treated not as passive subjects but instead involved in research design, ethical review, and the ongoing conduct and dissemination of research. Such participation might involve, for instance, including people who have served as research subjects on IRBs, or replacing IRB oversight for certain forms of research exempted from IRB oversight under a revised Common Rule with oversight by a body of community members or research subjects. It might also involve having the oversight of research that uses more participatory models be more participatory and less hierarchical in nature. I also raise questions about the exemption of research on public benefit programs from any research-level oversight and from consent requirements. While IRBs are likely not the correct overseers, there may be good reason to view such research with a critical eye, because of its potential for long-range impacts on the lives of participants. By giving research subjects a greater voice in research that aims at fine-tuning public benefit programs on which subjects rely, a deliberative oversight process has the potential to recast research participation as a form of active democratic participation and to address a “democratic deficit” in public health. Numerous proposals regarding health care have called for greater participation by laypeople and a more nonhierarchical approach to setting health priorities. Involving lay research subjects in the conduct of public benefits research and other forms of public health research may help to further these goals. (shrink)

We argue that charging people to participate in research is likely to undermine the fundamental ethical bases of clinical research, especially the principles of social value, scientific validity, and fair subject selection.

Research assessment and grant funding are vital to higher education. However, the reliance on quantitative metrics in these processes has raised concerns about their validity and potential negative consequences. This study aims to investigate the game of numbers in research assessment and grant funding, focusing on the perspectives of experienced researchers from around the globe. Accidental sampling elicited responses from more than 15 experienced researchers across different academic disciplines, institutions, and countries. The data were collected from the popular (...) “Reviewer 2 Must be Stopped!” Facebook platform, which includes more than 135,000 members across the globe. Two posts were made, allowing participants to share their experiences, perspectives, and concerns related to metrics and numbers in research assessment and grant funding. The results from the thematic analysis revealed diverse perspectives among experienced researchers. Some participants expressed concerns about the dominance of quantitative metrics, highlighting the limitations and potential biases associated with their use. Others acknowledged the value of certain indicators in showcasing research impact. Moreover, the impact of metrics on grant funding awards was also documented. The study highlights the necessity for a more balanced and context-aware approach to research assessment and grant funding, incorporating qualitative measures and acknowledging the diverse nature of research impact. (shrink)

Research misconduct remains an important problem in health research despite decades of local, national, regional, and international efforts to eliminate it. The ultimate goal of every health research project, irrespective of setting, is to produce trustworthy findings to address local as well as global health issues. To be able to lead or participate meaningfully in international research collaborations, individual and institutional capacities for research integrity are paramount. Accordingly, this paper concerns itself not only with individuals’ (...) research skills but also with institutional and national policies and governance. Such policies and governance provide an ethical scaffold for the production of knowledge and structure incentives. This paper’s operational definition of research therefore draws from Institute of Medicine’s articulation of health research as an inquiry that aims to produce knowledge about the structure, processes, or effects of personal health services; and from an existing health systems framework. The paper reviews the research regulatory environment and the ethics apparatus in Ghana, and describes a project jointly undertaken by Ghanaian researchers in collaboration with New York University to assess the perceived adequacy of current institutional practices, opportunities, and incentives for promoting RI. (shrink)

Recently, research capability has received an overwhelming and remarkable interest among academics and practitioners. This is timely since the Department of Education had institutionalized research and encouraged teachers to engage in it to support evidence-based practice, decision-making, policy, and program development. On these premises, a study was carried out to assess the research capability of public teachers in Malaybalay City, determine its correlates and determinants. It utilized descriptive, correlational, and explanatory designs. It administered survey questionnaires to 92 (...) participants. Data were analyzed using descriptive and inferential statistics. The results revealed that teachers were slightly capable of conducting research and having neutral attitudes toward it, motivated to write research, had a high level of difficulties in research processes, and moderately capable of action planning. They also show evidence of potential in mentoring. Further, mentoring and action planning skills, motivation to write research, attitudes toward research, and the number of studies completed by teachers were the correlates of their research capability at different magnitudes of the relationship. Notably, the research capability of teachers had a low, negative but significant relationship with their age and accumulated years of service. Thus, this capability deteriorates as they age and accumulate years of service. The motivation to write research, the number of studies completed, and age were the determinants of research capability. It was concluded that research capability can be determined and predicted by how motivated teachers are to write research, how productive they are in research, and how young they are when they engage in this rigorous endeavor. The study identified and recommended topics for continuing professional development. (shrink)

An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, (...) only discuss which results to return, or were developed outside Europe. To address this gap, we analysed existing normative documents identified online using inductive content analysis. We used this analysis to develop a checklist of steps to assist European researchers considering whether to return IRR to participants. We then sought feedback on the checklist from an interdisciplinary panel of European experts (clinicians, clinical researchers, population-based researchers, biobank managers, ethicists, lawyers and policy makers) to refine the checklist. The checklist outlines seven major components researchers should consider when determining whether, and how, to return results to adult research participants: 1) Decide which results to return; 2) Develop a plan for return of results; 3) Obtain participant informed consent; 4) Collect and analyse data; 5) Confirm results; 6) Disclose research results; 7) Follow-up and monitor. Our checklist provides a clear outline of the steps European researchers can follow to develop ethical and sustainable result return pathways within their own research projects. Further legal analysis is required to ensure this checklist complies with relevant domestic laws. (shrink)

Public participation in scientific research has gained prominence in many scientific fields, but the theory of participatory research is still limited. In this paper, we suggest that the divergence of values and goals between academic researchers and public participants in research is key to analyzing the different forms this research takes. We examine two existing characterizations of participatory research: one in terms of public participants' role in the research, the other in terms (...) of the virtues of the research. In our view, each of these captures an important feature of participatory research but is, on its own, limited in what features it takes into account. We introduce an expanded conception of norms of collaboration that extends to both academic researchers and public participants. We suggest that satisfying these norms requires consideration of the two groups' possibly divergent values and goals, and that a broad characterization of participatory research that starts from participants' values and goals can motivate both public participants’ role in the research and the virtues of the research. The resulting framework clarifies the similarities and differences among participatory projects and can help guide the responsible design of such projects. (shrink)

Much of the literature on ethical issues in child and youth participation has drawn on the epi- sodic experiences of participatory research efforts in which young people’s input has been sought, transcribed and represented. This literature focuses in particular on the power dynamics and ethi- cal dilemmas embedded in time-bound adult/child and outsider/insider relationships. While we agree that these issues are crucial and in need of further examination, it is equally important to examine the ethical issues embedded within the (...) “everyday” practices of the organizations in and through which young people’s participation in community research and development often occurs (e.g., community-based organizations, schools and municipal agencies). Drawing on experience from three summers of work in promoting youth participation in adult-led organizations of varying purpose, scale and structure, a framework is postulated that presents participation as a spatial practice shaped by five overlapping dimensions. The framework is offered as a point of discussion and a potential tool for analysis in examining ethical issues for young people’s parti- cipation in relation to organizational practice. (shrink)

Understanding the relationship between wilderness outings and the resulting experience has been a central theme in resource-based, outdoor recreation research for nearly 50 years. The authors provide a review and synthesis of literature that examines how people, over time, build relationships with wilderness places and express their identities as consequences of multiple, ongoing wilderness engagements (i.e., continued participation). The paper reviews studies of everyday places and those specifically protected for wilderness and backcountry qualities. Beginning with early origins and working (...) through contemporary research the authors synthesize what diverse social scientists have learned about the long-term and continual nature of wilderness participation and its impact on the formation of identity. The thrust of the paper points researchers, planners, and managers in non-traditional directions and reframes goals and objectives for visitor planning and management in wilderness and other protected areas. (shrink)

Low back pain (LBP) carries a high risk of chronicization and disability, greatly impacting the overall demand for care and costs, and its treatment is at risk of scarce adherence. This work introduces a new scenario based on the use of a mobile health tool, the Dress-KINESIS, to support the traditional rehabilitation approach. The tool proposes targeted self-manageable exercise plans for improving pain and disability, but it also monitors their efficacy. Since LBP prevention is the key strategy, the tool also (...) collects real-patient syndromic information, shares valid educational messages and fosters self-determined motivation to exercise. Our analysis is based on a comparison of the performance of the traditional rehabilitation process for non-specific LBP patients and some different scenarios, designed by including the Dress-KINESIS’s support in the original process. The results of the simulations show that the integrated approach leads to a better capacity for taking on patients while maintaining the same physiotherapists’ effort and costs, and it decreases healthcare costs during the two years following LBP onset. These findings suggest that the healthcare system should shift the paradigm towards citizens’ participation and the digital support, with the aim of improving its efficiency and citizens’ quality of life. (shrink)

The engineering knowledge research program is part of the larger effort to articulate a philosophy of engineering and an engineering worldview. Engineering knowledge requires a more comprehensive conceptual framework than scientific knowledge. Engineering is not ‘merely’ applied science. Kuhn and Popper established the limits of scientific knowledge. In parallel, the embrace of complementarity and uncertainty in the new physics undermined the scientific concept of observer-independent knowledge. The paradigm shift from the scientific framework to the broader participant engineering framework entails (...) a problem shift. The detached scientific spectator seeks the ‘facts’ of ‘objective’ reality – out there. The participant, embodied in reality, seeks ‘methods’, about how to work in the world. The engineering knowledge research program is recursively enabling. Advances in engineering knowledge are involved in the unfolding of the nature of reality. Newly understood, quantum uncertainty entails that the participant is a natural inquirer. ‘Practical reason’ is concerned with ‘how we should live’– the defining question of morality. The engineering knowledge research program is selective seeking ‘important truths’, ‘important knowledge’, ‘important methods’ that manifest value, and serve the engineering agenda of ‘the construction of the good.’ The importance of engineering knowledge research program is clear in the new STEM curriculum where educators have been challenged to rethink the relation between science and engineering. A 2015 higher education initiative to integrate engineering colleges into liberal arts and sciences colleges has stalled due to the confusion and conflict between the engineering and scientific representations of knowledge. (shrink)

Taking into consideration the extremely harsh public health conditions faced by the majority of the world population, the Health Impact Fund (HIF) proposal seeks to make the intellectual property regimes more in line with human rights obligations. While prioritizing access to medicines and research on neglected diseases, the HIF makes many compromises in order to be conceived as politically feasible and to retain a compensation character that makes its implementation justified solely on basis of negative duties. Despite that current (...) global health realities make such steps reasonable, the paper looks up the negative effects on one overlooked human right: the right to participate in scientific advancement. (shrink)

Trust has a great potential for furthering our understanding of organizational change and learning. This potential however remains largely untapped. It is argued that two reasons as for why this potential remains unrealized are: (i) A narrow conceptualization of change as implementation and (ii) an emphasis on direct and aggregated effects of individual trust to the exclusion of other effects. It is further suggested that our understanding of the effects of trust on organizational change, should benefit from including effects of (...) trust on the formulation stage. It should also benefit from exploring the structuring effects of trust in organizations. Throughout this chapter, ways to extend current research on trust in organizations are suggested. The chapter also provides examples of relevant contributions where available. In order to capture organizational effects of trust, it is suggested that trust should be studied over longer time intervals, and include several referents of trust, spanning both horizontal and vertical relationships in the organization. (shrink)

Student’s classroom participation in English language teaching: The case of Gozamen General Secondary School in Grade 10-A -/- Author / Authors : Atalay Mesfin Aneteneh Page no. 204-217 Discipline : Education Script/language : Roman/ English Category : Research paper/Action research Keywords: English, Teaching Elementary, Training, Action research.

The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the (...) dangers of research but largely silent about threats of ineffective, inefficient, and inequitable medical practices and health systems. -/- In For the Common Good: Philosophical Foundations of Research Ethics, Alex John London defends a conception of the common good that grounds a moral imperative with two requirements. The first is to promote research that generates the information necessary to enable key social institutions to effectively, efficiently, and equitably safeguard the basic interests of individuals. The second is to ensure that research is organized as a voluntary scheme of social cooperation that respects its various contributors' moral claims to be treated as free and equal. Connecting research to the goals of a just social order grounds a framework for assessing and managing research risk that reconciles these requirements and justifies key oversight practices in non-paternalistic terms. Reconceiving research ethics as resolving coordination problems and providing credible assurance that these requirements are being met expands the issues and actors that fall within the purview of the field and provides the foundation for a more unified and coherent approach to domestic and international research. -/- This is an open access title available under the terms of a CC BY-NC-ND 4.0 license. It is free to read at Oxford Scholarship Online and offered as a free PDF download from OUP and selected open access locations. (shrink)

Research ethics committees and institutional review boards spend considerable time developing, scrutinising, and revising specific consent processes and materials for survey-based studies conducted on crowdsourcing and online recruitment platforms such as MTurk and Prolific. However, there is evidence to suggest that many users of ICT services do not read the information provided as part of the consent process and they habitually provide or refuse their consent without adequate reflection. In principle, these practices call into question the validity of their (...) consent. In this paper we argue that although the ‘no read problem’ and the routinisation of consent may apply to research participants’ consent practices for studies on crowdsourcing platforms, this is not a serious problem. Furthermore, given that the informational requirements for informed consent in these contexts are minimal, we argue that these participants are, nevertheless, sufficiently informed to give valid consent. We conclude that research ethics committees and institutional review boards should only agonise over the precise details of the informed consent process and materials in those rare cases where appreciable risks to research participants need to be managed. (shrink)

Many researchers experiment with participatory settings to increase public engagement in research and innovation (R&I). Because of their temporary nature, it often remains unclear how such participatory experiments can contribute to structural change. This paper empirically explores options for bridging this gap. It analyzes how participants can be supported to act as institutional entrepreneurs to actively promote public engagement in R&I. To draw lessons, we analyze empirical material gathered on nineteen Social Labs which were set up to promote (...) the uptake of Responsible Research and Innovation in a European R&I funding program (Horizon 2020). Involvement of motivated participants, insight in their institutional context, and specific methods and management choices that enhance a sense of agency are identified as essential for organizing change. These findings and the resulting framework of interventions may prove valuable for further (action) research into the institutionalization of public engagement in R&I. (shrink)