Article

Person-Oriented Research Ethics: Integrating Relational and Everyday Ethics in Research

February 2018

February 2018
25(3)

DOI:10.1080/08989621.2018.1442218

Authors:

M. Ariel Cascio

Michigan State University

Eric Racine

Institut de recherches cliniques de Montréal

Research ethics is often understood by researchers primarily through the regulatory framework reflected in the research ethics review process. This regulatory understanding does not encompass the range of ethical considerations in research, notably those associated with the relational and everyday aspects of human subject research. In order to support researchers in their effort to adopt a broader lens, this paper presents a “person-oriented research ethics” approach. Five practical guideposts of person-oriented research ethics are identified: (1) respect for holistic personhood; (2) acknowledgement of lived world; (3) individualization; (4) focus on researcher-participant relationships; and (5) empowerment in decision-making. These guideposts are defined and illustrated with respect to different aspects of the research process (e.g., research design; recruitment, data collection). The person-oriented research ethics approach provides a toolkit to individual researchers, research groups, and research institutions in both biomedical and social science research wishing to expand their commitment to ethics in research.

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January 2019

M. Ariel Cascio · Eric Racine

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Research ethics in practice: An analysis of ethical issues encountered in qualitative health research with mental health service users and relatives

Article

Full-text available

Aug 2023
Med Healthc Philos

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as "procedural ethics" and the identification and handling of ethical issues by researchers during the research process as "ethics in practice." While some authors dispute and other authors defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors.

Operationalising a real-time research ethics approach: supporting ethical mindfulness in agriculture-nutrition-health research in Malawi

Article

Full-text available

Jan 2022
BMC Med Ethics

Background There have been notable investments in large multi-partner research programmes across the agriculture-nutrition-health (ANH) nexus. These studies often involve human participants and commonly require research ethics review. These ANH studies are complex and can raise ethical issues that need pre-field work, ethical oversight and also need an embedded process that can identify, characterise and manage ethical issues as the research work develops, as such more embedded and dynamic ethics processes are needed. This work builds on notions of ‘ethics in practice’ by developing an approach to facilitate ethical reflection within large research programmes. This study explores the application of a novel ‘real-time research ethics approach’ (RTREA) and how this can support ethical mindfulness. This involves embedding ethical analysis and decision-making within research implementation, with a continuous dialogue between participants and researchers. The aim is to improve ethical responsiveness and participant experience, which in turn may ethically support adherence and retention. In this case study, a bioethics team (BT) was embedded in a community-based randomised, controlled trial conducted in rural Malawi, titled the ‘Addressing Hidden Hunger with Agronomy’. To identify ethical issues, the researchers conducted ten focus group discussions, fourteen in-depth interviews with key informants, two workshops, observed two sensitisation and three activity meetings conducted by the trial team, and analysed fifteen reports from pre-trial to trial implementation. Results The RTREA facilitated the identification of social and ethical concerns and made researchers aware of participants’ ‘lived research experience’. To address concerns and experiences, the BT worked with researchers to facilitate conversation spaces where social and ethical issues were discussed. Conversation spaces were designed to create partnerships and promote participatory methods to capture trial participants’ (TPs) perspectives and experiences. Conclusions The use of RTREA showed the value of real-time and continuous engagement between TPs and researchers. These real-time processes could be embedded to complement traditional ethical guidance and expert opinions. A deeper engagement appeared to support greater operationalising of principles of inclusion, empowerment, and participant autonomy and supported researchers ‘ethical mindfulness’ which in turn may support instrumental outcomes of high recruitment, retention, and adherence levels.

Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature

Article

Full-text available

Mar 2021

**READ IT AT https://rdcu.be/b4bIb** Growth in autism research necessitates corresponding attention to autism research ethics, including ethical and meaningful inclusion of diverse participants. This paper presents the results of a review of research ethics literature, strengthened by consultation with a task force involving autism professionals, family members, and self-advocates on the spectrum. It reviews research ethics concerns around sex and gender; level of support needs; communication modes; race, ethnicity, geography, and language; socioeconomic status; and age. The exclusion of marginalized subgroups of people with autism is a major ethical concern. Researchers can facilitate inclusion by using inclusive terminology, developing accessible communication strategies, or traveling to meet participants. A person-oriented research ethics framework described in this paper structures the advice offered in the literature to create inclusive and supportive research environments.

Person-Oriented Research Ethics and Dementia: The Lack of Consensus

Article

Full-text available

Mar 2020

Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.

Empowerment in decision-making for autistic people in research

Article

Feb 2020

Empowerment in research is important in many autism and autistic communities and an important part of ‘nothing about us without us’. It is also an important component of person-oriented research ethics. This article reviews the literature on ethics in autism research for information related to decision-making empowerment for autistic people. A review of 81 articles reveals several themes and specific strategies. Empowerment is important for, but also goes beyond, establishing informed consent. Empowerment is a form of participant and community engagement, and necessarily shaped by specific context. The view of research ethics put forth in this article envisions ethics as a potential avenue for empowerment, where research participants are able to decide how to be involved and to shape research processes and contexts. This view of research ethics is aligned with the aspirations of many in advocacy communities, though it may not correspond to conventional understandings of research ethics. • Points of interest • This article talks about ethics in autism research. • It focuses on the importance of people with autism having the power to make choices about research. • It describes what published articles have said about this issue. • Making choices about research includes not only the choice to take part in a study or not, but also many other choices before, during, and after the study. • The way that this article talks about research ethics helps achieve goals of many autistic people and disabled people to be included.

Ethical Considerations in Research With People From Refugee and Asylum Seeker Backgrounds: A Systematic Review of National and International Ethics Guidelines

Article

Full-text available

Oct 2023

Refugees and asylum seekers may experience challenges related to pre-arrival experiences, structural disadvantage after migration and during resettlement requiring the need for special protection when participating in research. The aim was to review if and how people with refugee and asylum seeker backgrounds have had their need for special protection addressed in national and international research ethics guidelines. A systematic search of grey literature was undertaken. The search yielded 2187 documents of which fourteen met the inclusion criteria. Few guidelines addressed specific ethical considerations for vulnerable groups much less people with refugee and asylum seeker backgrounds. One guideline explicitly addressed vulnerability for refugees and asylums seekers. To ensure members of ethics committees and researchers consider the potential challenges of conducting research with these groups, guidelines may need to be supplemented with a refugee and asylum seeker specific research ethics framework. Such a framework may be necessary to optimally protect people with refugee and asylum seeker backgrounds in research.

Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic

Article

Full-text available

Jul 2023

There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants’ rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.

The Promotion of Health Literacy

Article

Full-text available

Mar 2023

Progress in predictive medicine has increased the challenges to navigating complex risk information for patients and healthcare professionals. This contribution investigates how people facing the risk of developing Alzheimer’s dementia perceive risk, what aspects are relevant to their health literacy, and how to promote individual health literacy in predictive medicine. We conducted a qualitative study analyzing narrative interviews, body maps, and sociodemographic data from persons who had undergone early predictive procedures in a memory clinic. We understand the promotion of health literacy as an ethical task in predictive medicine and argue for (1) emphasizing personal resources to promote subjective health literacy, (2) reframing communication and decision-making about disease risk, and (3) teaching skills for value-sensitive, individualized risk communication.

Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research

Article

Full-text available

Jun 2022

Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused approaches may obstruct valuable research. We call for an approach that encourages researchers and research communities—including regulators, ethics committees, funders and publishers of academic research—to acquire skills to make morally appropriate decisions, and not base decision-making solely on compliance with prescriptive regulations. We call this ‘ethical preparedness’ and outline how a research ethics system might make space for this approach.

Representation of Information Literacy Skills Interpreted From GPA and Gender: A Study of Prospective Science Education Teachers

Conference Paper

Full-text available

Dec 2020

Information Literacy Skills (ILS) is an essential component in the university in preparing generations to face global challenges. This study aims to interpret the ILS in terms of the average Grade Point Average (GPA) and gender. Participants in this Prospective Science Education Teachers (PSET) in East Java from 2015-2017 with a total of 27 PSET, with details of 17 (67%) PSET and 10 (37%) male PSET. This study uses a quantitative approach using ILS exams as an instrument of study. The data that can be analyzed data is done descriptively statistically. The results of the study show the average percentage of correct answers to ILS relating to simple category investigations (49.6%). Based on gender, prefer the right percentage of answers to male PSET (48.5%) and female PSET (50.3%). This study concludes that the ILS of PSET is a straightforward category, the preference of the ILS of female PSET is rather high compared to male PSET.

Lived experiences of participation in mental health research in Canada: breaking the glass wall

Article

Oct 2020

Research participants are crucial to the entire research enterprise, but they are still predominantly conceived as mostly passive, ‘silent’ partners in the field of research ethics. Participants generally have very limited opportunities to share their lived experiences of participation in research and their views about the ethics of research. This gap is particularly concerning for research participants whose agency is already undermined by unjust social structures, such as individuals living with mental illness. Our study investigates the perspectives on research of mental health research participants and mental health advocates in Canada. We found that many participants had positive experiences of participation in research and valued their experience. The positive impacts of research participation, however, depend the willingness of researchers to actively create an accessible and respectful research environment. • Points of interest • People with mental illness who participate in research projects do not often get to talk about their experiences. We think that this is a mistake and that researchers should learn from them. • We interviewed 14 research participants and individuals who work to defend the rights of people with mental illness. • The research participants said that participating in research had made them feel good. It made them feel respected, valued, and listened to. • Participants do not want to feel like “things” or “objects” behind a glass wall. They want to be treated as equals. • This research is important because it shows that participating in research can be a positive experience for people with mental illness.

Enriching our understanding of vulnerability through the experiences and perspectives of individuals living with mental illness

Article

Oct 2019

Vulnerability is as a central concept in research ethics and typically serves to identify individuals or groups whose participation in research prompts specific concerns or warrants special consideration. While theoretical discussions on vulnerability have contributed valuable insights to discussions of mental health research and care, they have not been enriched thus far by stakeholder perspectives. This oversight has important consequences for the ways in which we frame vulnerability. It misses the far-reaching insights and experiential knowledge of mental health research participants whose experiences this ethics concept ultimately seeks to capture. In view of this gap, our study combines a pragmatist ethics framework and interpretive phenomenological analysis of qualitative interviews to explore user perspectives on the notion of vulnerability through the lived experiences of mental health research participants and patient-advocates. Importantly, these perspectives offer essential clues to address the difficulties of operationalizing concerns for vulnerability in concrete and practical ways. They help refine our understanding of this key ethics concept.

The Role of Human Resource Management towards Employees Retention during Covid-19 Pandemic: A Study Based on Bangladesh

Article

Full-text available

Apr 2024

Mohammed Abdul Jalil

Background: The COVID-19 pandemic has significantly impacted organizations worldwide, affecting employee retention. Human Resource Management (HRM) plays a crucial role in addressing these challenges by implementing strategies to enhance employee satisfaction and retention. Objective: This study aims to examine HRM's role in mitigating the pandemic's adverse effects on employee retention in Bangladesh. Specifically, it investigates the motivational principles influencing retention levels and the strategies HR managers can employ to maximize employee satisfaction. Method: A quantitative approach was utilized, with 100 respondents selected through non-probability sampling. Original data was collected using a survey questionnaire distributed via Google Forms. Data analysis involved descriptive, reliability, correlation, and regression analyses using SPSS and Microsoft Excel. Result: The study found that HR managers should focus on workplace guidelines (68%), access to pandemic information (73%), financial benefits (65%), healthcare (70%), and communication (75%) to maximize employee satisfaction. The analysis revealed significant correlations between these factors and employee retention, with percentage findings indicating the extent of their impact. Conclusion: HRM plays a vital role in enhancing employee retention during the COVID-19 pandemic. By prioritizing employee satisfaction through effective strategies, organizations can mitigate the adverse effects of the pandemic and ensure long-term employee retention and organizational success.

Living ethics: a stance and its implications in health ethics

Article

Full-text available

Mar 2024
Med Healthc Philos

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

Orchestrating Harmony in the Chaos of Maltese Language Learning through the Lens of Chaos/Complexity Theory

Article

Full-text available

Mar 2024

Jacqueline Żammit

Despite considerable studies in the field of second language acquisition (SLA), the precise cognitive processes occurring in an adult’s mind during second language (L2) learning remain elusive. This study investigates the intricate process of adult’s SLA, specifically focusing on Maltese. Grounded in chaos/complexity theory (C/CT), the research explores the non-linear, dynamic, and unpredictable nature of language learning, likening it to the emergence of order in seemingly chaotic systems. The study employs a qualitative approach, by employing various data collection methods such as structured tests, reflective journals, and interviews to track the learning progression of 35 adults learning Maltese over 15 months. The emphasis is on the acquisition of Maltese verbs and the emergence of non-linear learning curves, akin to the butterfly effect in C/CT. The findings underscore the chaotic yet harmonious nature of Maltese language learning, providing valuable insights for educators and learners alike.

ENGINEERING EDUCATION: THE IMPORTANCE OF READING IN CULTIVATING STUDENT RESEARCH OUTPUT

Article

Full-text available

Oct 2020

Ihab M. Katar

Research is a core activity in the education process and one of the most central assessment tools in grading systems. Sound research demands effective search tools for the collection of required data and the cultivation of output. Although a large amount of research is received from students through a variety of activities during undergraduate education, most lacks precise data and creativity. In a course entitled General Engineering Design, two activities reflecting research value were assigned to students and added to the grading assessment scheme. These activities were also part of an experiment applied to engineering students that explored differences in the performed research. In the first activity, students were requested to give presentations after being provided with a topic and without any additional conditions. In the second, the students were asked to conduct flipped classroom activities on a topic but with a condition: they must read certain selections from their textbook. Grades were collected and analyzed to determine the variances in performance quality. It was clear that reading cultivated the research output shown in the deliverables, highlighting the importance of the neglected practice of reading that is lacking in most of the activities undertaken by the current undergraduate generation.

Patient priorities for fulfilling the principle of respect in research: findings from a modified Delphi study

Article

Full-text available

Sep 2023
BMC Med Ethics

Background Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research. Methods We conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item’s mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research. Results Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research.

Research and Research Culture in Mathematics Education: The Case in Macao, China

Chapter

May 2023

Macao, a Special Administration Region of China (Macao SAR), is unique in that its mathematics education practice and research have integrated both the eastern and western traditions. Its participation in the Programme for International Student Assessment (PISA) since 2003 inspired the research culture in mathematics education in Macao from international perspectives. In this article, we report on a survey of three kinds of research done in mathematics education in Macao: (1) research related to PISA, in particular PISA 2012 and PISA 2018; (2) research done for master’s and Ph.D. theses/dissertations in higher institutions in Macao; and (3) articles published in educational journals, particularly in mathematics education in Macao. The survey reveals emerging research cultures in mathematics education over the past decade—the interests of researchers and practitioners in topics such as comparative studies, lesson studies, mathematical problem-solving, and the use of information technology in mathematics teaching and learning. Lastly, we summarize what Macao has done well and what it needs to do better for further development of Macao’s research culture within the global trend of literacy-based mathematics education as modeled by the PISA.KeywordsResearch cultureMathematics educationMacaoPISA

Academic Procrastination among Indonesian University Learners: Interaction with Cheating, Absenteeism, and L2 Achievement

Article

Full-text available

Mar 2023

Adaninggar Septi Subekti

Background. Many studies suggested that academic procrastination is particularly prevalent among learners at university level. However, empirical data on the interactions between academic procrastination and, respectively, learners’ attitudes towards cheating (AtC), absenteeism, and learning achievement, are either generally inconclusive or non-existent, especially in English as Foreign Language (EFL) literature. Thus, it is worthwhile to conduct a study to examine these issues in the Indonesian EFL context, home to one of the largest communities of EFL learners in the world. Purpose. The aim of this study was to investigate academic procrastination of Indonesian EFL learners at university level and the interactions of these learners’ procrastination with AtC, absenteeism, and second/foreign language (L2) achievement. Method. The study used an online survey method and 164 learners from non-English departments participated in this study. Results. On the basis of descriptive statistics, it was found that the participants reported a moderate level of procrastination in English class. Furthermore, this study found that learners' procrastination significantly and positively correlated with their AtC and absenteeism. This indicated that the more learners procrastinated, the higher their approval of cheating behaviour, and the more likely they were to be absent in English classes. The predictive power of learner procrastination was 16.4% on AtC, and at 8.3% on absenteeism. Moreover, the study also found a significant, negative, and moderate relationship between learner procrastination and their L2 achievement with learners' procrastination being able to predict 16.5% of the total variance in L2 achievement. Conclusion. Teachers are suggested to promote project-based tasks in groups where the step-by-step progress of learners is continually monitored, feedback given, and rewarded. This could discourage procrastination, absenteeism, as well as cheating behaviours, and potentially promote more optimal L2 achievement.

Time Perspective and Decision-Making: A Study on Decisional Patterns in Argentinian Adults

Article

Full-text available

Apr 2023

The first aim of this study was to adapt the MDMQ to Argentinian Spanish and to collect evidence of its validity and reliability; the second was to determine if time perspectives were adequate predictors of decisionmaking styles. A first sample of 536 participants served in the validation process; a second sample of 209 individuals who completed the mdmq and the Brief Zimbardo Time Perspective Inventory (ZTPI) was used to conduct descriptive-correlational and regression analyses. Confirmatory factor analysis corroborated a four-factor model with adequate internal consistency for each subscale. Regression analyses showed that future time perspective positively predicted the display of higher vigilant coping patterns —adaptive and rational decision-making style—. Meanwhile, less futuretime- oriented people were more likely to engage in defensive avoidance mechanisms to reach a decision. Past-negative and present-fatalistic time perspectives were positive predictors of non-vigilant decisionmaking style. It indicates that individuals with an aversive vision over their past experiences and present situation are more likely to engage in emotionally based and avoidant decision-making patterns. These findings support the reliability and construct-related validity of the MDMQ for assessing decision-making styles among Argentinian individuals and set a step for conducting more in-depth research in the field of decisionmaking and time perspective.

Ethical challenges in participatory research with children and youth

Article

Full-text available

Feb 2023

The growth of relational, participatory, collaborative and emergent research approaches in recent years has brought new ethical challenges for research with children and youth. These approaches require greater consideration of the specific social and cultural contexts of the research, along with the greater emphasis on researcher–participant relationships that often occur over sustained periods of time. Very few tools are available to help researchers think through the everyday ethical dilemmas such research can raise. In this article, we review the theoretical underpinnings of feminist and indigenous research methodologies that have encouraged these emerging approaches. Through examining an 18-month Youth Participatory Action Research (YPAR) project case study, we critically review ethical moments relating to negotiating consent over a sustained period of time, enhancing co-design and navigating power issues between adult and youth researchers. We conclude with a number of questions to ‘think with’ when reflecting on ethical research with children and youth.

The Significance of Chaos/Complexity Theory in Maltese as a Second Language Acquisition

Preprint

Full-text available

Apr 2022

Jacqueline Żammit

Despite extensive research in second language acquisition (SLA), we are still a long way from understanding what exactly happens in the adult’s mind while learning a second language (L2). This study explores whether a learning pattern could be established over time in 35 adults learning Maltese as a second language (ML2), especially with respect to Maltese verbs. This research is driven by chaos/complexity theory. It focuses on the non-linear learning curve, the origins of the butterfly effect and fractal patterns of learning. It describes how learning is unpredictable, chaotic, dynamic and complex. A longitudinal research system and a mixed-method approach focussed on methodological triangulation were used in this research. Structured Timed Grammaticality Judgment Tests, verb conjugation tasks, reflected journals and interviews were used to investigate the learning curve over a period of 15 months. According to the results, all participants indicated a non-linear learning pattern and confirm the characteristics of Chaos/Complexity Theory.

The Significance of Chaos/Complexity Theory in Maltese as a Second Language Acquisition

Article

Full-text available

Apr 2022

Jacqueline Żammit

Despite extensive research in second language acquisition (SLA), we are still a long way from understanding what exactly happens in the adult's mind while learning a second language (L2). This study explores whether a learning pattern could be established over time in 35 adults learning Maltese as a second language (ML2), especially with respect to Maltese verbs. This research is driven by chaos/complexity theory. It focuses on the non-linear learning curve, the origins of the butterfly effect and fractal patterns of learning. It describes how learning is unpredictable, chaotic, dynamic and complex. A longitudinal research system and a mixed-method approach focussed on methodological triangulation were used in this research. Structured Timed Grammaticality Judgment Tests, verb conjugation tasks, reflected journals and interviews were used to investigate the learning curve over a period of 15 months. According to the results, all participants indicated a non-linear learning pattern and confirm the characteristics of Chaos/Complexity Theory.

“I Knew She'd Get It, and Get Me”: Participants' Perspectives of a Participatory Autism Research Project

Article

Nov 2021

Introduction: Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves. Methods: We spoke to 25 Australian late-diagnosed autistic adults (aged 45-72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants' interviews. Results: Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as "exhausting" and "draining," participants also reported feeling "supported all the way" and agreed "it was made easier because I had an autistic researcher interviewing me." One participant went so far as to say that they "probably would have dropped out [of the project] if it was run by people who weren't autistic." Conclusions: These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research.

The Role of Human Resources Management Towards Healthcare Providers Retention during Covid-19 Pandemic in Egypt

Article

Full-text available

Jul 2021

HRM has a significant role in motivating the employees and ensuring that every employee is satisfied with the HR practices. Healthcare providers have been facing stress and depression especially in Egypt, due to COVID-19. In this country, the healthcare providers are looking for alternatives to achieve satisfaction as COVID-19 has affected their jobs, salaries, incentives, and bonuses. The past studies have focused on assessing the HRM"s role in employee retention and satisfaction during the COVID-19 pandemic in Egypt. The past research discussed the impact of motivation, incentives, and rewards on the employees" motivation. This study focused on evaluating the role of HRM towards the healthcare providers' retention during COVID-19 in Egypt. This study relied on the quantitative approach for achieving the findings and conclusion. The sample size of the study involved 120 healthcare providers working in different hospitals. The results revealed that intrinsic motivation, rewards, incentives, monetary benefits, and non-monetary benefits have an essential role in maintaining the healthcare providers during COVID-19. It is concluded that HR can play a significant role in retaining key healthcare providers in COVID-19. The elements including intrinsic motivation, incentives, non-monetary, and monetary benefits can play a significant part in retaining healthcare providers. HR departments should focus on releasing salaries on time, providing specific bonuses, and providing incentives to healthcare providers whenever they perform at their best level.

The Role of Human Resources Management Towards Healthcare Providers Retention during Covid-19 Pandemic in Egypt

Article

Full-text available

Jun 2021

Beyond the Interview Guide: Experiences of Practically and Mindfully Implementing Interview Guidelines When Conducting Research With Children and Adolescents With Chronic Conditions and Their Siblings

Article

Full-text available

Mar 2021

Children and adolescents who live with chronic conditions are rarely participants in research specifically focused on meeting their needs, nor in intervention planning research. There are, however, special considerations required when conducting research with children and adolescents. This article offers Interview Guidelines designed to ensure children and adolescents’ control of and comfort with interviewing and to maximize the caliber of ethically co-constructed data. We developed, tested, and revised these guidelines with 80 children and adolescents aged 5 to 17 years: 27 with complex Congenital Heart Disease (CCHD) (5–17 years) and 13 with Early Onset Scoliosis (5–12 years) and 28 siblings (7–17 years). The guidelines were further tested with 12 adolescents with Adolescent Idiopathic Scoliosis (10–16 years) and 10 children and adolescents with CCHD (8–12 years). The children and adolescents recounted stories about their everyday life and activities through digitally recorded face-to-face interviews that were transcribed. Detailed field notes were recorded before and after the interview. Our Interview Guidelines address ethics, informed assent and consent, pre-interview planning, establishing trust, and engaging children and adolescents in research. Special attention is given to involving parents in pre-interview planning and disclosing sensitive information post interview. Involving children and adolescents as research participants to gain information from them, not only about them, will assist those in planning appropriate intervention research to meet the needs of children and adolescents living with chronic conditions and their siblings.

Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities

Article

Jun 2020
AUTISM

Lay abstract: Research ethics means issues that concern the welfare and wellbeing of people who take part in research. It is important in all scientific studies. Ethics helps people who do research treat people who take part in research fairly and with respect. This article is about day-to-day ethics when autistic people take part in research. We present tips for researchers who want to do this type of study. We used two methods to create these tips. First, we wanted to know what other people said about this topic. We used a literature review to find out. Second, we wanted to know what autistic people, parents, and professionals thought, and had a working group meet to discuss it. The working group provided advice that researchers could consider around day-to-day ethics in research. This article talks about these methods and advice. The advice fits into five big groups: Tailor the research process for the unique needs of each person. Think about the world in which people who take part in research live. Make it easier for people to make their own choices. Value what people who take part in research have to share and consider their needs and strengths. Think about how researchers and people who take part in research work together. This project shows why it is useful for researchers and communities to talk about research ethics together.

Research conversations with children and adolescents: Development and use of comprehensive interview guidelines

Preprint

Full-text available

Jun 2020

Five sources of methodological data: the interview recordings, transcribed interviews, interviewer’s pre and post field notes, interviewer reflective journals, and team meeting notes.

Dual consent? Donors’ and recipients’ views about involvement in decision-making on the use of embryos created by gamete donation in research

Article

Full-text available

Dec 2019
BMC Med Ethics

Background: Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients about who should take part in consent processes for the use of EGDs in research. Methods: From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes (response rate: 76%). Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and recipients. Results: The majority of participants (74.6% of donors and 65.7% of recipients) were willing to donate embryos for research. Almost half of the donors (48.6%) and half of the recipients (46.9%) considered that a dual consent procedure is desirable. This view was more frequent among employed recipients (49.7%) than among non-employed (21.4%). Donors were less likely to believe that only recipients should be involved in giving consent for the use of EGDs in research (25.0% vs. 41.7% among recipients) and were more frequently favourable to the idea of exclusive donors' consent (26.4% vs. 11.4% among recipients). Conclusions: Divergent views on dual consent among donors and recipients indicate the need to develop evidence-based and ethically sustainable policies and guidelines to protect well-being, autonomy and reproductive rights of both stakeholder groups. More empirical research and further theoretical normative analyses are needed to inform people-centred policy and guidelines for shared decision-making concerning the use of EGDs for research.

Instrumentalist analyses of the functions of ethics concept-principles: a proposal for synergetic empirical and conceptual enrichment

Article

Full-text available

Aug 2019
Metamedicine

**SharedIt Link: https://rdcu.be/bThEj** Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role(s) it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: (1) function identification, (2) function enrichment, and (3) function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing (eudaimonia). We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts.

Experiences of being diagnosed with motor neuron disease: “I just want to know”

Article

May 2019
Collegian

Background The diagnosis of a life limiting condition such as motor neurone disease (MND) is a challenging process for all affected by it. There is little research exploring the experience of living with MND. Understanding people’s experiences of a diagnosis of MND can help improve diagnosis experiences and relationships with health professionals. Aim This paper reports on a study exploring the diagnosis experiences of people living with MND, and how these experiences have impacted their lives. Methods A qualitative descriptive approach was used. Semi-structured interviews were undertaken with six participants diagnosed with MND. Interviews were transcribed verbatim and analysed using thematic analysis. Findings Four themes emerged, namely Barriers to early diagnosis increase uncertainty; Being treated like a person; Regaining self and control of life; and Support. The results support the need for timely diagnosis to reduce uncertainty and increase trust and interaction with health professionals. Findings also emphasise the importance of early referral to support services and provision of disease specific resources to augment the input of health professionals. Conclusion The diagnosis period is a crucial and sensitive time for people with MND. These findings highlight how understanding the experiences of those being diagnosed with MND can guide health professionals in their management of the diagnosis process. Improved outcomes for patients may be achieved through enhancing the diagnosis experience.

Hacking a Brain for Contemptuous Interests: Ethical Risks of Advancing Neuroscience Techniques for Mind Control

Article

Full-text available

Feb 2019

Remote interviewing, accessibility, and scams: Notes on a case of fraudulent responses to a recruitment flyer

Article

May 2024

M. Ariel Cascio

Remote interviewing has become even more common since the start of the COVID-19 pandemic and allows greater accessibility for many interview participants regardless of pandemic circumstances. This accessibility is especially important in the context of my research with autistic individuals. However, it may also expose interview studies to the same concerns about fraudulent responses that survey studies face. While advice for survey research often suggests requiring interviews as a way to discourage fraudulent responses, I had participants I later concluded were misrepresenting their eligibility actually complete audio interviews. In this note, I describe my experience with this potential scam, the solutions I rejected, and the solutions I ultimately implemented to add additional screening questions related to where the participant lived and how they heard about the study. In line with my interpretivist and constructivist approach to autism studies, I focus on strategies for identifying who is “really eligible” without gatekeeping who is “really autistic.” I argue that many of the suggestions for identifying fraudulent participants may inappropriately exclude autistic or neurodivergent individuals, and describe a framework for identifying locally relevant and culturally appropriate screening questions that do not overly burden or scrutinize participants.

Researching young migrants in vulnerable conditions. Methodological and ethical guidelines. Based on the MIMY project

Technical Report

Full-text available

Jan 2023

The goal of this report is to provide methodological and ethical guidelines for researching young migrants in vulnerable situations. The selection of the themes we decided to focus on was driven by the assumption that, while traditional methods such as semi-structured in-depth interviews or focus group interviews are well covered in the literature, more innovative and participatory techniques still need both description and critical analysis. Therefore, we decided to choose from a rich MIMY portfolio those methods and approaches, inspired by a participatory approach, that we find promising in researching young migrants. These are the peer research approach, visual methods and art-based methods. Moreover, since we believe that while doing this kind of research methodological decisions are intrinsically connected with ethics, we dedicate the last part of the report to the ethical aspects of working with young migrants in vulnerable conditions.

Applying person-centered research ethics in the design of dementia-specific measures

Article

Jun 2023
J AGING STUD

There is an emerging call for new strengths-based measures to guide research, care, and support for persons living with Alzheimer's disease and related dementias. Person-centered interventions have demonstrated a positive impact in global quality of life, but many promising approaches lack strengths-based measures with sufficient sensitivity to document relevant outcomes. Human centered design is an innovative method for person-centered instrument development. This paper describes a research process using Human Centered Design and highlights ethical principles considered during the translation of the design process to experiential world of Alzheimer's disease and related dementia. Including persons living with dementia and care partners as members of the design team offers new insights, while requiring focused attention on inclusivity, transparency, and person-centered ethics.

Building a Research Culture in Philippine Graduate Education: Reflections on Experiences in Mathematics Education

Chapter

May 2023

With the recognition of the lead role of graduate education in enhancing the quality of teaching and research in higher education, this chapter draws upon the literature and practice on how the development of a research culture in graduate education may provide the means toward attainment of the goals and desired outcomes of graduate education and research productivity in Philippine higher education. The construct of research culture in higher education is examined in light of its evolving meaning, and five dimensions were identified namely: individual identities, institutional attributes, community of practice, research environment, and research artifacts. With reference to regional and national qualification frameworks that define the nature and outcomes of graduate education, the factors that contribute toward building a research culture in graduate education were identified based on two dimensions: the graduate student identity and the research learning environment. Four concrete models for graduate research mentoring are described, and reflections from experiences in graduate mathematics education are presented. The chapter winds up with recommendations for future directions.KeywordsResearch cultureGraduate educationHigher education research

To conceal or reveal: ethical tensions and concerns in participatory action research-the relational adventures in a rural China village community research project

Article

Jun 2022

Siu Ling Fok

The author reviewed her involvement in a participatory action research project for child protection in a rural Chinese community in this paper. Numerous observations and reflections on ethical tensions and decision-making are discussed. These discussions raise awareness about the ethical implications of a participatory action-inquiry process. Everyday ethical issues in research should be addressed collaboratively and relationally.

Personalized treatment - which interaction ingredients should be focused to capture the unconscious

Article

Full-text available

Mar 2022

Abstract A recent meta-analysis revealed that mental health and baseline psychological impairment affect the quality of life and outcomes in different chronic conditions. Implementing mental health care in physical care services is still insufficient. Thus, interdisciplinary communication across treatment providers is essential. The standardized language provided by the diagnostic statistical manual favors a clear conceptualization. However, this approach might not focus on the individual, as thinking in categories might impede recognizing the continuum from healthy to diseased. Psychoanalytic theory is concerned with an individual’s unconscious conflictual wishes and motivations, manifested through enactments like psychic symptoms or (maladaptive) behavior with long-term consequences if not considered. Such modifiable internal and external factors often are inadequately treated. However, together with the physical chronic condition constraints, these factors determine degrees of freedom for a self-determined existence. The effect of therapeutic interventions, and especially therapy adherence, relies on a solid therapeutic relationship. Outcome and process research still investigates the mechanism of change in psychotherapeutic treatments with psychanalysis’s focus on attachment problems. This article examines existing knowledge about the mechanism of change in psychoanalysis under the consideration of current trends emerging from psychotherapy research. A clinical example is discussed. Additionally, further directions for research are given. The theoretical frame in psychoanalytic therapies is the affect-cognitive interface. Subliminal affect-perception is enabled via awareness of subjective meanings in oneself and the other; shaping this awareness is the main intervention point. The interactional ingredients, the patient’s inherent bioenvironmental history meeting the clinician, are relevant variables. Several intrinsic, subliminal parameters relevant for changing behavior are observed. Therapeutical interventions aim at supporting the internalization of the superego’s functions and at making this ability available in moments of self-reflection. By supporting mentalization abilities, a better understanding of oneself and higher self-regulation (including emotional regulation) can lead to better judgments (application of formal logic and abstract thinking). Thus, this facilitates enduring behavior change with presumably positive effects on mental and physical health.

Examining study participants’ decision-making and ethics-related experiences in a dietary community randomized controlled trial in Malawi

Article

Full-text available

Dec 2021
BMC Med Ethics

Background The participant recruitment process is a key ethical pivot point when conducting robust research. There is a need to continuously review and improve recruitment processes in research trials and to build fair and effective partnerships between researchers and participants as an important core element in ensuring the ethical delivery of high-quality research. When participants make a fair, informed, and voluntary decision to enroll in a study, they agree to fulfill their roles. However, supporting study participants to fulfill study requirements is an important ethical obligation for researchers, yet evidenced as challenging to achieve. This paper reports on participants’ motivations to volunteer and remain part of a dietary study conducted in Kasungu District, Malawi. Methods We conducted twenty in-depth interviews (with chiefs, religious leaders, trial participants, and health surveillance assistants), five systematic ethnographic observations, and fourteen focus group discussions with trial participants and their partners. Interviews were audio-recorded and transcribed verbatim. We used a grounded theory methodology to analyse data that included coding, detailed memo writing, and data interpretation. Findings The findings reveal that many participants had concerns during the trial. Thematically, experiences included anxieties, mistrust of researchers, rumours, fears of exploitation, and misconceptions. Anonymous concerns collected from the participants were reported to the trial team which enabled the researchers to appropriately support participants. Despite initial concerns, participants described being supported and expressed motivation to take up their role. Conclusion These findings highlight a diverse map of multiple notions of what is ethically relevant and what can impact participation and retention within a study. The study has revealed how embedding a responsive approach to address participants’ concerns and ethical issues can support trust relationships. We argue for the need to employ embedded ethics strategies that enhance informed consent, focus on participants’ needs and positive experiences, and support researchers to fulfill their roles. This work highlights the need for research ethics committees to focus on the risks of undue influence and prevent exploitation especially in settings with a high asymmetry in resources and power between researcher and participant groups. Trial Registration : The Addressing Hidden Hunger with Agronomy (Malawi) trial was registered on 5th March 2019 (ISCRTN85899451).

Ethical Issues in Social Media Recruitment for Clinical Studies (Preprint)

Article

Full-text available

Jun 2021
J MED INTERNET RES

Background: Social media recruitment for clinical studies holds the promise of being a cost-effective way of attracting traditionally marginalized populations and promoting patient engagement with researchers and a particular study. However, using social media for recruiting clinical study participants also poses a range of ethical issues. Objective: This study aims to provide a comprehensive overview of the ethical benefits and risks to be considered for social media recruitment in clinical studies and develop practical recommendations on how to implement these considerations. Methods: On the basis of established principles of clinical ethics and research ethics, we reviewed the conceptual and empirical literature for ethical benefits and challenges related to social media recruitment. From these, we derived a conceptual framework to evaluate the eligibility of social media use for recruitment for a specific clinical study. Results: We identified three eligibility criteria for social media recruitment for clinical studies: information and consent, risks for target groups, and recruitment effectiveness. These criteria can be used to evaluate the implementation of a social media recruitment strategy at its planning stage. We have discussed the practical implications of these criteria for researchers. Conclusions: The ethical challenges related to social media recruitment are context sensitive. Therefore, social media recruitment should be planned rigorously, taking into account the target group, the appropriateness of social media as a recruitment channel, and the resources available to execute the strategy.

Collective Care Amid US Individualism Through COVID-19 Vaccine Trial Participation

Article

Nov 2021

We analyze interviews with participants in a COVID-19 vaccine trial to show how Americans navigate conflicting discourses of individual rights and collective responsibility by using individual health behavior to care for others. We argue that interviewees drew on ideologies of “collective biology” – understanding themselves as parts of bio-socially interrelated groups affected by any member’s behavior – to hope their participation would aid collectives cohering around kinship, sex, age, race and ethnicity. Benefits (protecting family, representing one’s group in vaccine development and modeling vaccine acceptance) existed alongside drawbacks (strife, reifying groups), to illustrate the ambivalence of caregiving amid inequality.

The evaluation of pediatric-adult transition programs: What place for human flourishing?

Article

Jun 2021

Adolescents with chronic health conditions transitioning from pediatric to adult healthcare services experience a wide array of difficulties. In response, transition programs have been developed. Transition programs commonly embody goals such as autonomy and independence. However, these may not be highly valued by young adults and their families. To assess critically the current evaluation of goals and outcomes of these programs, the concept of human flourishing offers a promising alternative to concepts of quality of life. It grants that objectives pursued (e.g., health, social integration) stand to be interpreted by the agent as being valuable and coherent with their meaning-making narrative. Flourishing is also an indicator of physical and psychological health. The purpose of this paper is to review the literature on transition care to assess whether and how flourishing is addressed in the evaluation of transition programs. We carried out systematic sampling of the literature and applied a qualitative thematic content extraction strategy. Based on Ryff and Singer's integrative concept of flourishing, we examined whether six key dimensions of flourishing (self-acceptance, positive relations with others, personal growth, purpose in life, environmental mastery, and autonomy) were present in current evaluation practices. We reviewed 105 relevant papers and found that (1) 44 out of 105 articles evaluated one or more dimensions of human flourishing; (2) there was considerable variation in the assessment of these dimensions, which was sometimes minimalistic; (3) no single evaluation was based on an explicit measure of human flourishing; (4) autonomy and positive relationships were the dimensions most investigated; (5) the evaluation of transition care mostly emphasized medical aspects of health. Considering its lifelong impact, it is crucial to better understand how transition care can support the flourishing of young adults. Open-ended views on flourishing based on participatory and collaborative research designs should be explored in this context.

Demonstrating 'respect for persons' in clinical research: Findings from qualitative interviews with diverse genomics research participants

Article

Oct 2020
J MED ETHICS

The ethical principle of 'respect for persons' in clinical research has traditionally focused on protecting individuals' autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals' rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English (n=30) or Spanish (n=10) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female (93%), identified as Hispanic/Latino(a) (43%) or non-Hispanic white (38%), reported annual household income under US$60 000 (70%) and did not have a Bachelor's degree (65%); 30% had limited health literacy. We identified four key domains for demonstrating respect: (1) personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; (2) study communication processes, including following up and sharing results with participants; (3) inclusion, particularly ensuring materials are understandable and procedures are accessible; and (4) consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research.

Person-Oriented Research Ethics to Address the Needs of Participants on the Autism Spectrum

Article

Sep 2020

Research ethics scholarship often attends to vulnerability. People with autism may be vulnerable in research, but are also vulnerable to unjust exclusion from participation. Addressing the needs of participants with autism can facilitate inclusion and honor the bioethics principle of respect for persons while accounting for risk and vulnerability. Drawing from a review of the literature and informed by a moral deliberation process involving a task force of stakeholders (including autistic people and parents of autistic people), we use the model of person-oriented research ethics to identify several practical strategies researchers can use to address these needs and foster inclusion. Strategies include using multiple means of communication, addressing the sensory environment, preparing participants in advance, and accounting for social context. These practical strategies are not just methodological or design choices; they are inherently related to ethical issues. Method and design choices fulfill ethical aspirations by facilitating inclusion, reducing discomfort, and focusing on individuals.

Two Problematic Foundations of Neuroethics and Pragmatist Reconstructions

Article

Full-text available

Oct 2018

Common understandings of neuroethics, that is, of its distinctive nature, are premised on two distinct sets of claims: (1) neuroscience can change views about the nature of ethics itself and neuroethics is dedicated to reaping such an understanding of ethics, and (2) neuroscience poses challenges distinct from other areas of medicine and science and neuroethics tackles those issues. Critiques have rightfully challenged both claims, stressing how the first may lead to problematic forms of reductionism whereas the second relies on debatable assumptions about the nature of bioethics specialization and development. Informed by philosophical pragmatism and our experience in neuroethics, we argue that these claims are ill founded and should give way to pragmatist reconstructions; namely, that neuroscience, much like other areas of empirical research on morality, can provide useful information about the nature of morally problematic situations, but does not need to promise radical and sweeping changes to ethics based on neuroscientism. Furthermore, the rationale for the development of neuroethics as a specialized field need not to be premised on the distinctive nature of the issues it tackles or of neurotechnologies. Rather, it can espouse an understanding of neuroethics as both a scholarly and a practical endeavor dedicated to resolving a series of problematic situations raised by neurological and psychiatric conditions.

12. The Socialization of Contemporary Students by Ethics Boards: Malaise and Ethics for Graduate Students: Exploring Alternatives to Formal Research-Ethics Review

Chapter

Full-text available

Dec 2016

Lisa-Jo van den Scott

Enriching the concept of vulnerability in research ethics: An integrative and functional account

Article

Full-text available

Aug 2018

The concept of vulnerability is widely used in research ethics to signal attention to participants who require special protections in research. However, this concept is vague and under‐theorized. There is also growing concern that the dominant categorical approach to vulnerability (as exemplified by research ethics regulations and guidelines delineating vulnerable groups) is ethically problematic because of its assumptions about groups of people and is, in fact, not very guiding. An agreed‐upon strategy is to move from categorical towards analytical approaches (focused on analyzing types and sources of vulnerability) to vulnerability. Beyond this agreement, however, scholars have been advancing competing accounts of vulnerability without consensus about its appropriate operationalization in research ethics. Based on previous debates, we propose that a comprehensive account of vulnerability for research ethics must include four components: definition, normative justifications, application, and implications. Concluding that no existing accounts integrate these components in a functional (i.e., practically applicable) manner, we propose an integrative and functional account of vulnerability inspired by pragmatist theory and enriched by bioethics literature. Using an example of research on deep brain stimulation for treatment‐resistant depression, we illustrate how the integrative‐functional account can guide the analysis of vulnerability in research within a pragmatist, evidence‐based approach to research ethics. While ultimately there are concerns to be addressed in existing research ethics guidelines on vulnerability, the integrative‐functional account can serve as an analytic tool to help researchers, research ethics boards, and other relevant actors fill in the gaps in the current landscape of research ethics governance.

Rethinking the Belmont Report?

Article

Full-text available

Jul 2017

This article reflects on the relevance and applicability of the Belmont Report nearly four decades after its original publication. In an exploration of criticisms that have been raised in response to the report and of significant changes that have occurred within the context of biomedical research, five primary themes arise. These themes include the increasingly vague boundary between research and practice, unique harms to communities that are not addressed by the principle of respect for persons, and how growing complexity and commodification in research have shed light on the importance of transparency. The repercussions of Belmont's emphasis on the protection of vulnerable populations is also explored, as is the relationship between the report's ethical principles and their applications. It is concluded that while the Belmont Report was an impressive response to the ethical issues of its day, the field of research ethics involving human subjects may have outgrown it.

On Using Ethical Principles of Community-Engaged Research in Translational Science

Article

Full-text available

Dec 2015

The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA appropriateness method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be "grounded in trust." Although the academic panel endorsed "culturally appropriate" and "forthcoming with community about study risks and benefits," the mixed academic-community panel endorsed "scientifically valid" and "ready to involve community in interpretation and dissemination" as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large.

Everyday ethics in community-based participatory research

Article

Full-text available

Nov 2013

This article explores a range of ethical issues that arise in community-based participatory research (CBPR), drawing on literature and examples from practice. The experience of CBPR practitioners adds further weight to the growing critique by many other social researchers of regulatory approaches to research ethics (which focus on rule following in accordance with research governance frameworks, codes of conduct and ethics review procedures). Yet, whilst many of the ethical challenges in CBPR are common to social research generally (informed consent, anonymity, issues of ownership of data and findings), the dynamic, complex and value-based nature of CBPR gives them particular prominence. There are also specific issues relating to the ethics of partnership working, collaboration, blurring of boundaries between researchers and researched, community rights, community conflict and democratic participation that are more frequently encountered in CBPR. Four practice examples are used to demonstrate this argument. These are taken from a young women's community allotment, a community organisation researching poverty, a youth peer research project and a museum-based digital storytelling project. The article concludes that current institutional ethical codes, guidelines and ethical review procedures are not particularly well-suited to CBPR, in that they adopt principle-based and regulatory approaches to ethics; whereas character- and relationship-based approaches to ethics are also very important in CBPR, which is adopted by many researchers with a strong value commitment to social justice.

Competence, voluntariness, and oppressive socialization: A feminist critique of the threshold elements of informed consent

Article

Full-text available

Mar 2015

Feminists have argued that oppressive socialization undermines the liberal model of autonomy. We contend that this argument can also be employed effectively as a challenge to the standard bioethical model of informed consent. We claim that the standard model is inadequate because it relies on presumptions of procedural autonomy and rational choice that overlook the problem of how agents are often socialized so that they adopt and internalize oppressive norms as part of their motivational structure. The argument that oppressive socialization undermines liberalism's view of autonomy is most relevant to what Beauchamp and Childress call the threshold elements of informed consent - competence and voluntariness. We show how these elements fail to account for morally relevant factors such as oppressive socialization.

Epigenome data release: A participant-centered approach to privacy protection

Article

Full-text available

Jul 2015
GENOME BIOL

Large-scale epigenome mapping by the NIH Roadmap Epigenomics Project, the ENCODE Consortium and the International Human Epigenome Consortium (IHEC) produces genome-wide DNA methylation data at one base-pair resolution. We examine how such data can be made open-access while balancing appropriate interpretation and genomic privacy. We propose guidelines for data release that both reduce ambiguity in the interpretation of open-access data and limit immediate access to genetic variation data that are made available through controlled access. Electronic supplementary material The online version of this article (doi:10.1186/s13059-015-0723-0) contains supplementary material, which is available to authorized users.

Ethical decision making in qualitative research

Article

Full-text available

Aug 2011

Ron Iphofen

Towards a relational ethics: Rethinking ethics, agency and dependency in research with children and youth

Article

Full-text available

Mar 2015
Anthropol Theor

While anthropologists have reflected on ethics and power since the late 1960s, the specific dilemmas that arise in research conducted with children and youth have scarcely been addressed. Nevertheless, critical anthropology's reflections on power relations and reflexivity can valuably contribute to the interdisciplinary debate in the field of childhood studies, by complexifying categories of voice, dependency and agency, which are often taken for granted in the ethical conversation. Drawing on ethnographic fieldwork with undocumented youth in Montreal, this article argues for the importance of a critical understanding of childhood within a wider context of interdependence, and consequently, for a redefinition of ethics as a reflexive and relational space of intersubjectivity.

Qualitative research with families living with autism spectrum disorder: Recommendations for conducting semistructured interviews

Article

Full-text available

Nov 2014

In this paper, the insights and experiences of a research team involved in conducting qualitative research with families living with autism spectrum disorder are drawn upon to provide reflections and recommendations across all stages of the qualitative research process. Particular attention is given to the steps involved in semistructured interviews, specifically, interview guide preparation, participant recruitment, obtaining informed and voluntary consent/assent, conducting effective interviews, accurate analysis and interpretation of data, ways to involve participants in data analysis, effective communication of research findings, and providing feedback to participants. In addition, reflections and recommendations are provided for maintaining researcher health throughout the qualitative research process.

The SALOME study: Recruitment experiences in a clinical trial offering injectable diacetylmorphine and hydromorphone for opioid dependency

Article

Full-text available

Jan 2015
SUBST ABUSE TREAT PR

The Study to Assess Long-term Opioid Medication Effectiveness (SALOME) is a two-stage phase III, single site (Vancouver, Canada), randomized, double blind controlled trial designed to test if hydromorphone is as effective as diacetylmorphine for the treatment of long-term illicit opioid injection. Recruiting participants for clinical trials continues to be a challenge in medical and addiction research, with many studies not being able to reach the planned sample size in a timely manner. The aim of this study is to describe the recruitment strategies in SALOME, which offered appealing treatments but had limited clinic capacity and no guaranteed post-trial continuation of the treatments. SALOME included chronic opioid-dependent, current illicit injection opioid users who had at least one previous episode of opioid maintenance treatment. Regulatory approvals were received in June 2011 and recruitment strategies were implemented over the next 5 months. Recruitment strategies included ongoing open communication with the community, a consistent and accessible team and participant-centered screening. All applicants completed a pre-screening checklist to assess prerequisites. Applicants meeting these prerequisites were later contacted to commence the screening process. A total of 598 applications were received over the two-year recruitment period; 130 were received on the first day of recruitment. Of these applicants, 485 met prerequisites; however, many could not be found or were not reached before recruitment ended. For the 253 candidates who initiated the screening process, the average time lapse between application and screening date was 8.3 months (standard deviation [SD] = 4.44) and for the 202 randomized to the study, the average processing time from initial screen to randomization was 25.9 days (SD = 37.48; Median = 15.0). As in prior trials offering injectable diacetylmorphine within a supervised model, recruiting participants for this study took longer than planned. The recruitment challenges overcome in SALOME were due to the high number of applicants compared with the limited number that could be randomized and treated. Our study emphasizes the value of integrating these strategies into clinical addiction research to overcome study-specific barriers.Trial registration: ClinicalTrials.gov: NCT01447212.

‘It’s my life’

Article

Full-text available

Dec 2014

This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is, homes and daily activities. The article demonstrates how practices have improved with time and seem less paternalistic. However, the article also demonstrates that the assistance people with intellectual disabilities receive in their homes often has institutional qualities, and they are often met with belittling perspectives from staff and family members. Furthermore, many did not have access to important information needed to develop individual autonomy and independence, including making their own choices. The research findings suggest that people with intellectual disabilities can with appropriate support develop individual autonomy and make their own choices. © The Author(s) 2014.

Time for person centered research in neuroscience: Users driving the change

Article

Full-text available

Apr 2014

There is an exciting opportunity to change the landscape of clinical trials and new interventions. Research can now be tailored to the needs of the public through the use of public led online trials (PLOTs) and participatory research interventions in the form of user driven healthcare. We explore some of the advantages and pitfalls of collaborative participant centered research. Collaboration is made possible through online communication, social media, and the desire of researchers, the public and clinicians to work collaboratively for the common good.

Assessing Participant-Centered Outcomes to Improve Clinical Research

Article

Full-text available

Dec 2013
NEW ENGL J MED

The value of patient-centered outcome measures for improving care is now well established. In contrast, research participants' perspectives on aspects of their research experiences, such as whether the informed-consent process prepared them for participation, are rarely examined.

What's in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’-What's Next?

Article

Full-text available

Sep 2009

Hugh Mclaughlin

This article challenges the terms we use to describe the relationship between those who assess and commission services and those who are the recipient of those services. In particular, the article identifies the different terms that have been used in British social work, including ‘client’, ‘customer’, ‘consumer’, ‘service user’ and ‘expert by experience’, highlighting their assumptive worlds and the relationships the terms suggest and signify. Service user (the most popular term at present) is highlighted and critically analysed and found to be increasingly problematic and unable to describe the complexities of the service-recipient relationship. Alternative terms are discussed and found wanting, whilst a possible way forward is suggested to avoid the negative connotations of any one particular term.

Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self

Article

Jan 2000

This collection of original essays explores the social and relational dimensions of individual autonomy. Rejecting the feminist charge that autonomy is inherently masculinist, the contributors draw on feminist critiques of autonomy to challenge and enrich contemporary philosophical debates about agency, identity, and moral responsibility. The essays analyse the complex ways in which oppression can impair an agent’s capacity for autonomy, and investigate connections, neglected by standard accounts, between autonomy and other aspects of the agent, including self-conception, self-worth, memory, and the imagination.

Relational autonomy as an essential component of patient-centered care

Article

Sep 2011

Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since (1) patients guide care in patient-centered care, and (2) respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered care becomes more coherent, is strengthened, and could help practitioners to make better use of a principle of respect for autonomy. Hence, its use appears promising to narrow the theory–practice gap.

Deciding for Others: The Ethics of Surrogate Decision Making

Book

Jan 1990

This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines the value of advance directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike.

Culture, Behavior and Personality.

Article

Mar 1974

Pragmatic Neuroethics: Improving Treatment and Understanding of the Mind-Brain

Book

Jun 2010

Eric Racine

A survey of the emerging field of neuroethics that calls for a multidisciplinary, pragmatic approach for tackling key issues and improving patient care. Today the measurable health burden of neurological and mental health disorders matches or even surpasses any other cluster of health conditions. At the same time, the clinical applications of recent advances in neuroscience are hardly straightforward. In Pragmatic Neuroethics, Eric Racine argues that the emerging field of neuroethics offers a way to integrate such specialties as neurology, psychiatry, and neurosurgery with the humanities and social sciences, neuroscience research, and related healthcare professions, with the goal of tackling key ethical challenges and improving patient care. Racine provides a survey of the often diverging perspectives within neuroethics, offers a theoretical framework supported by empirical data, and discusses the neuroethical implications of such issues as media coverage of neuroscience innovation and the importance of public concerns and lay opinion; nonmedical use of pharmaceuticals for performance enhancement; and the discord between intuitive notions about consciousness and behavior and the scientific understanding of them. Racine proposes a pragmatic neuroethics that combines pluralistic approaches, bottom-up research perspectives, and a focus on practical issues (in contrast to other more theoretical and single-discipline approaches to the field). [He discusses ethical issues related to powerful neuroscience insights into the mechanisms underlying moral reasoning, cooperative behavior, and such emotional processes as empathy.] In addition, he outlines a pragmatic framework for neuroethics, based on the philosophy of emergentism, which identifies conditions for the meaningful contribution of neuroscience to ethics, and sketches new directions and strategies for meeting future challenges for neuroscience and society. Basic Bioethics series

L'éthique de la recherche: Guide pour le chercheur en sciences de la santé

Book

Jan 2002

Hubert Doucet

Expertise in Nursing Practice

Book

Mar 2009

The Therapeutic “Mis”conception: An Examination of its Normative Assumptions and a Call for its Revision

Article

Jan 2018

Dissecting Bioethics, edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics. The department is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people’s actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are particularly appreciated. To submit a paper or to discuss a suitable topic, contact Tuija Takala at tuija.takala@helsinki.fi .

Behavioral and brain based research on free moral agency: Threatening or empowering?

Chapter

Nov 2017

The belief that people are free human beings is central to much explanation of human behavior as well as to a broad set of social practices such as law, ethics, and politics. Neuroscience has been heralded as a game-changer that will radically alter how people perceive human freedom and potentially lead to the denial of its very existence. This chapter first examines some of the claims made by neuroscience research that challenge beliefs in free moral agency. It posits that a commonly held but unfounded objectivist and essential stance toward free moral agency and an equally common dichotomist fact–value/is–ought tension are at the center of these problematic interpretations. A resolution can be found in pragmatist theory and recent research in social psychology, both of which suggest that knowledge can also empower moral agency.

Contextualized Autonomy and Liberalism: Broadening the Lenses on Complementary and Alternative Medicines in Preclinical Alzheimer’s Disease

Article

Mar 2017
KENNEDY INST ETHIC J

Given advances in Alzheimer’s disease (AD) research, some experts have proposed a state of “preclinical” AD to describe asymptomatic individuals displaying certain biomarkers. The diagnostic accuracy of these biomarkers remains debated; however, given economic pressures, this “diagnosis” may eventually reach consumers. Since evidence-based prevention and treatment options remain only modestly effective, patients may turn to complementary and alternative medicine (CAM). We explore ethical challenges associated with CAM use in preclinical AD. We first consider these issues through the liberal lens, which emphasizes informed choice while occasionally disregarding the complexity of decision making, at least as currently applied to CAM policies. We then broaden the liberal lens with a socio–contextual lens, which describes the impact of social context on choice. Finally, we describe an alternate lens (contextualized liberalism) and its practical health and policy implications while 1) building on the liberal commitment to autonomy and 2) recognizing contextual determinants of choice.

The Censor's Hand: The Misregulation of Human-Subject Research

Book

Apr 2015

Carl Schneider

An argument that the system of boards that license human-subject research is so fundamentally misconceived that it inevitably does more harm than good. Medical and social progress depend on research with human subjects. When that research is done in institutions getting federal money, it is regulated (often minutely) by federally required and supervised bureaucracies called “institutional review boards” (IRBs). Do—can—these IRBs do more harm than good? In The Censor's Hand, Schneider addresses this crucial but long-unasked question. Schneider answers the question by consulting a critical but ignored experience—the law's learning about regulation—and by amassing empirical evidence that is scattered around many literatures. He concludes that IRBs were fundamentally misconceived. Their usefulness to human subjects is doubtful, but they clearly delay, distort, and deter research that can save people's lives, soothe their suffering, and enhance their welfare. IRBs demonstrably make decisions poorly. They cannot be expected to make decisions well, for they lack the expertise, ethical principles, legal rules, effective procedures, and accountability essential to good regulation. And IRBs are censors in the place censorship is most damaging—universities. In sum, Schneider argues that IRBs are bad regulation that inescapably do more harm than good. They were an irreparable mistake that should be abandoned so that research can be conducted properly and regulated sensibly.

Ensuring Respect for Human Research Participants: Institutional Review Boards and Sharing Results From Research

Article

Sep 2016

This Viewpoint proposes that institutional review boards play a larger role in ensuring timely public reporting of clinical trial results, with the goals of promoting medical innovation, reducing publication bias, and maximizing the value of clinical trials. The Food and Drug Administration Amendments Act of 2007 (FDAAA) requires that investigators report summary results of eligible clinical trials to ClinicalTrials.gov within 1 year of trial completion. This requirement is in part intended to promote medical innovation by enabling meta-analyses and further research based on the results of clinical trials.¹ Sharing trial results helps to counteract a publication bias favoring positive trials that can “distort the evidence base” of clinical guidelines and patient care.² In addition, sharing the results of clinical trials is important for ethical reasons: it helps to justify exposing participants to the risks of clinical trials and shows respect for those who assume these risks.

The socialization of contemporary students by ethics boards: Malaise and ethics for graduate students

Chapter

Jan 2016

L.-J.K. Van Den Scott

The ethics rupture: Exploring alternatives to formal research ethics review

Book

Jan 2016

For decades now, researchers in the social sciences and humanities have been expressing a deep dissatisfaction with the process of research-ethics review in academia. Continuing the ongoing critique of ethics review begun in Will C. van den Hoonaard’s Walking the Tightrope and The Seduction of Ethics, The Ethics Rupture offers both an account of the system’s failings and a series of proposals on how to ensure that social research is ethical, rather than merely compliant with institutional requirements. Containing twenty-five essays written by leading experts from around the world in various disciplines, The Ethics Rupture is a landmark study of the problems caused by our current research-ethics system and the ways in which scholars are seeking solutions.

What Is Everyday Ethics? A Review and a Proposal for an Integrative Concept

Article

Jul 2016

"Everyday ethics" is a term that has been used in the clinical and ethics literature for decades to designate normatively important and pervasive issues in healthcare. In spite of its importance, the term has not been reviewed and analyzed carefully. We undertook a literature review to understand how the term has been employed and defined, finding that it is often contrasted to "dramatic ethics." We identified the core attributes most commonly associated with everyday ethics. We then propose an integrative model of everyday ethics that builds on the contribution of different ethical theories. This model proposes that the function of everyday ethics is to serve as an integrative concept that (1) helps to detect current blind spots in bioethics (that is, shifts the focus from dramatic ethics) and (2) mobilizes moral agents to address these shortcomings of ethical insight. This novel integrative model has theoretical, methodological, practical, and pedagogical implications, which we explore. Because of the pivotal role that moral experience plays in this integrative model, the model could help to bridge empirical ethics research with more conceptual and normative work.

Moving in My World: From School PE to Participants-Centered Art Exhibitions

Article

Jan 2016

Laura Azzarito

To address persistent health and physical activity issues, listening to the opinions and needs of a diverse population should be at the forefront of a social justice agenda. This article examines how a participant-centered photo exhibition, as the culmination of a two-year-long visual participatory research project, provided a site of public pedagogy for the audience to be acculturated around issues of ethnically diverse young people's physical activity. Drawing from constructivist theory, I first present ethnically diverse young people as "experts of their own lives" and as active agents in their self-expression of their embodiments. I then demonstrate how young people's visual narratives created alternative visions to media-driven body ideals, and to current schooling practices of body control and regulation. Last, I consider the benefits and limitations of organizing a photo exhibition as a pedagogical means to disseminate research findings to a larger audience, beyond the "academic monopoly," for social change.

A person-centered approach to commitment research: Theory, research, and methodology

Article

May 2016
J ORGAN BEHAV

There has been a recent increase in the application of person-centered research strategies in the investigation of workplace commitments. To date, research has focused primarily on the identification, within a population, of subgroups presenting different cross-sectional or longitudinal configurations of commitment mindsets (affective, normative, and continuance) and/or targets (e.g., organization, occupation, and supervisor), but other applications are possible. In an effort to promote a substantive methodological synergy, we begin by explaining why some aspects of commitment theory are best tested using a person-centered approach. We then summarize the results of existing research and suggest applications to other research questions. Next, we turn our attention to methodological issues, including strategies for identifying the best profile structure, testing for consistency across samples, time, culture, and so on, and incorporating other variables in the models to test theory regarding profile development, consequences, and change trajectories. We conclude with a discussion of the practical implications of taking a person-centered approach to the study of commitment as a complement to the more traditional variable-centered approach. Copyright

Porous or Contextualized Autonomy? Knowledge Can Empower Autonomous Moral Agents

Article

Feb 2016

Veljko Dubljevic

Are Research Ethics Committees Prepared for Community-Based Participatory Research?

Article

Nov 2015

Community-based participatory research (CBPR) is challenging to research ethics committees (RECs). We reviewed the REC preparedness when reviewing CBPR projects. We searched the MEDLINE database and included qualitative studies of CBPR researchers or REC members about their experiences with RECs. The search yielded 107 studies, of which 10 met our criteria. Barriers were that the community is not prepared to conduct research, the reluctance of RECs to work outside the university, the difficulty RECs have understanding CBPR, and that REC forms evaluate individual rather than community risk. Facilitators were having a CBPR expert as an REC member and educating RECs. Therefore, RECs are not prepared to evaluate CBPR projects leading to unnecessary delays in the approval process.

Informed Consent: Legal Theory and Clinical Practice

Article

Jan 2001

Citation: Berg JW, Appelbaum PS, Lidz CW and Parker LS: Informed Consent: Legal Theory and Clinical Practice. 2nd Edition, Fair Lawn, NJ, Oxford University Press, 2001. ISBN 0195126777, 9780195126778. Summary: Informed consent - as an ethical ideal and legal doctrine - has been the source of much concern to clinicians. Drawing on a diverse set of backgrounds and two decades of research in clinical settings, the authors - a lawyer, a physician, a social scientist, and a philosopher - help clinicians understand and cope with their legal obligations and show how the proper handling of informed consent can improve , rather than impede, patient care. Following a concise review of the ethical and legal foundations of informed consent, they provide detailed, practical suggestions for incorporating informed consent into clinical practice. This completely revised and updated edition discusses how to handle informed consent in all phases of the doctor-patient relationship, use of consent forms, patients' refusals of treatment, and consent to research. It comments on recent laws and national policy, and addresses cutting edge issues, such as fulfilling physician obligations under managed care. This book contains a wealth of information that will not only help clinicians meet the legal requirements of informed consent and understand its ethical underpinnings, but also enhance their ability to deal with their patients more effectively. It will be of value to all those working in areas where issues of informed consent are likely to arise, including medicine, biomedical research, mental health care, nursing, dentistry, biomedical ethics, and law. Partial preview of book available via Google Books.

Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision-Making

Article

Jul 2015
Child Soc

Sarah Louise Skyrme

Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This paper focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these cooperative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence.

A platform for change?

Article

Jun 2015

Accessible summary The governments in the UK want people with learning disabilities to have a voice about what happens in their own life and also in policy. One way of doing this is through research. This paper looks at two inclusive research projects, which were about people using direct payments and personal assistants. The projects both employed people with learning disabilities. Each of these projects made a training pack from the research, so that they would help people with learning disabilities and their supporters. They also had some effects in ways that were not planned, because the government wanted to learn from them about inclusive research. All research seems to have most effect when there are many voices seeking change, including those of policy makers themselves. Inclusive research is a way of achieving ‘choice and control’. But just like with direct payments and personal budgets, the best way in these projects was to have good support from other people who will listen to you, and help you decide things for yourself. Summary Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self‐advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of ‘choice and control’, showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a ‘bandwagon effect’ of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and ‘direct’ user level and is often achieved by people with learning disabilities having a voice at the dissemination stage.

Principal Investigator Views of the IRB System

Article

Jan 2008
Int J Med Sci

Simon N. Whitney

We undertook a qualitative e-mail survey of federally-funded principal investigators of their views of the US human subjects protection system, intended to identify the range of investigator attitudes. This was an exploratory study with a 14% response rate. Twenty-eight principal investigators responded; their comments were analyzed to show underlying themes, which are here presented along with supporting quotations. There was consensus that it is important to protect human subjects from research abuse, but disagreement over how well the IRB system is functioning. Some researchers felt that the system is effective and serves its purpose well. Of those who support the system, some endorse its methods, purpose, and daily functioning, as they experience it, without reservation. Others, while expressing some frustration, feel that the purpose is important and their local IRB does its best to make a difficult system work well. Those investigators who were more harshly critical commented on multiple flaws in the system, including (1) consent forms that are inappropriate and incomprehensible, (2) an emphasis on minutiae, and (3) concern with protecting the institution more than research subjects. Respondents told us that the IRB system is a particular burden for research in neurology, emergency medical conditions, repositories, and social sciences in general; a more comprehensive study might identify other problematic areas. Significant concern was expressed about the cost, inefficiency, and irrationality of IRB review. The IRB system works well for some researchers, but our results indicate that other investigators feel the costs outweigh the benefits.

Cancer patient decision making related to clinical trial participation: an integrative review with implications for patients’ relational autonomy

Article

Jan 2015

Oncology clinical trials are necessary for the improvement of patient care as they have the ability to confirm the efficacy and safety of novel cancer treatments and in so doing, contribute to a solid evidence base on which practitioners and patients can make informed treatment decisions. However, only 3-5 % of adult cancer patients enroll in clinical trials. Lack of participation compromises the success of clinical trials and squanders an opportunity for improving patient outcomes. This literature review summarizes the factors and contexts that influence cancer patient decision making related to clinical trial participation. An integrative review was undertaken within PubMed, CINAHL, and EMBASE databases for articles written between 1995 and 2012 and archived under relevant keywords. Articles selected were data-based, written in English, and limited to adult cancer patients. In the 51 articles reviewed, three main types of factors were identified that influence cancer patients' decision making about participation in clinical trials: personal, social, and system factors. Subthemes included patients' trust in their physician and the research process, undue influence within the patient-physician relationship, and systemic social inequalities. How these factors interact and influence patients' decision-making process and relational autonomy, however, is insufficiently understood. Future research is needed to further elucidate the sociopolitical barriers and facilitators of clinical trial participation and to enhance ethical practice within clinical trial enrolment. This research will inform targeted education and support interventions to foster patients' relational autonomy in the decision-making process and potentially improve clinical trial participation rates.

Deciding for Others: The Ethics of Surrogate Decision Making

Article

Mar 1992

Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making.

Article

Apr 1992

The Everyday Ethics of Field Work Research with Vulnerable Patients.

Article

Aug 2014
Stud Health Tech Informat

Valentina Lichtner

Patients are increasingly involved in health informatics research. Researchers are always aware of the ethical dimensions of their research, but studies in the field with patients - especially among the frail, elderly, cognitively impaired - present specific additional 'everyday moral dilemmas'. Reflecting on experiences of a hospital study of patients with dementia, this paper draws attention on the type and constant presence of this situated ethics, the immediacy of decision-making, and the importance of everyday ethics for health informatics.

Beyond Consent in Research

Article

May 2014

Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant's decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices.

Research Participant-Centered Outcomes at NIH-Supported Clinical Research Centers

Article

May 2014

Background: Although research participation is essential for clinical investigation, few quantitative outcome measures exist to assess participants' experiences. To address this, we developed and deployed a survey at 15 NIH-supported clinical research centers to assess participant-centered outcomes; we report responses from 4,961 participants. Methods: Survey questions addressed core aspects of the research participants' experience, including their overall rating, motivation, trust, and informed consent. We describe participant characteristics, responses to individual questions, and correlations among responses. Results: Respondents broadly represented the research population in sex, race, and ethnicity. Seventy-three percent awarded top ratings to their overall research experience and 94% reported no pressure to enroll. Top ratings correlated with feeling treated with respect, listened to, and having access to the research team (R(2) = 0.80-0.96). White participants trusted researchers more (88%) than did nonwhite participants collectively (80%; p < 0.0001). Many participants felt fully prepared by the informed consent process (67%) and wanted to receive research results (72%). Conclusions: Our survey demonstrates that a majority of participants at NIH-supported clinical research centers rate their research experience very positively and that participant-centered outcome measures identify actionable items for improvement of participant's experiences, research protections, and the conduct of clinical investigation.

‘I guess it scares us’ – Teachers discuss the teaching of poetry in Senior Secondary English

Article

Oct 2013
Engl Educ

This article reports on a participant-centred research project with English teachers in a senior secondary college in Melbourne, Australia. It builds on previous research (Weaven and Clark 2009, 2011), which showed a low take-up of the opportunities to teach poetry in Victoria's senior secondary English curriculum. This study explores the reasons why teachers of English are unwilling to use poetry texts in their senior classes. The teachers who participated in this study discussed and documented their attitudes towards the teaching of poetry and explored with each other the pedagogical challenges associated with teaching poetry. Their discussions – an analysis of which forms the empirical core of this article – reveal a range of explanations for teachers' reservations about offering poetry to their students. Importantly, these teachers were able to use professional discussion as a means to consider what changes in teaching practice could be successfully developed to facilitate more time spent on the teaching of poetry in senior secondary classes.

Ethical Principles of Informed Consent: Exploring Nurses’ Dual Role of Care Provider and Researcher

Article

Dec 2013

This article describes the ethical principles of autonomy, beneficence, and justice within the nurse researcher–participant relationship as these principles relate to the informed consent process for research. Within this process, the nurse is confronted with a dual role. This article describes how nurses, who are in the dual role of care provider and researcher, can apply these ethical principles to their practice in conjunction with the American Nurses Association’s code of ethics for nurses. This article also describes, as an element of ethical practice, the importance of using participant-centered quality measures to aid informed decision making of participants in research. In addition, the article provides strategies for improving the informed consent process in nursing research. Finally, case scenarios are discussed, along with the application of ethical principles within the awareness of the dual role of the nurse as care provider and researcher. J Contin Educ Nurs. 2014;45(1):35–42.

Mixed Methods Data Collection in Dementia Research A “Progressive Engagement” Approach

Article

Oct 2011

This article describes data collection within an Australian mixed methods study that investigated family carers’ stress levels and experiences of dementia services and the cognitive and functional abilities of individuals experiencing dementia. Qualitative and quantitative data were collected via a “progressive engagement” process involving “multidisciplinary functioning,” “unambiguous protocols,” and “participant-centered procedures.” The approach achieved high-quality data and 100% participant retention. Study details are located within a broader discussion of mixed methods research in the social sciences and a pragmatic paradigm fitting to dementia research. The article contributes to the field of mixed methods research by highlighting philosophical issues relevant to dementia researchers and by providing sufficient depth of detail for interested readers to adopt or adapt the authors’ mixed methods procedures.

From Psychologism to Personhood: Honneth, Recognition, and the Making of Persons

Article

Feb 2012

Renante Pilapil

The paper explores the philosophical anthropology and the moral grammar of recognition. It does so by examining how the formation of the self is informed by social recognition, the result of which can motivate individuals and groups to engage in struggles for recognition. To pursue this task, the discussion focuses on the insights of Honneth, who grounds his theory of recognition in the intersubjective relations between persons. The idea that recognition impacts the formation of personal identity is regarded as susceptible to the charge of reducing recognition demands into demands for satisfying psychological needs. Contrary to this worry, the central claim of the paper is that such an identity-based understanding of recognition can still be salvaged. More precisely, this can be done by conceiving of demands of recognition as demands for inclusion into personhood through which the moral dimension of recognition struggles is properly understood. This article concludes that despite its potential ambiguities, the notion of personhood and its relation to recognition remains philosophically defensible.

Undocumented Research Participants: Ethics and Protection in a Time of Fear

Article

Sep 2011

President Obama characterized Arizona’s recent immigration law as undermining “basic notions of fairness that we cherish as Americans.” The authors’ extend the national discussion regarding immigration to ethics and research. Therefore, the purpose of this methodological article is to advance areas for ethical consideration when researching undocumented participants. Undocumented participants have been described as vulnerable and in need of protection when researched. The authors contend that undocumented participants are capable, competent, yet vulnerable simultaneously. Characterizing these participants as wholly vulnerable is a form of Otherization. The authors present a literature review of Other, vulnerable participants, illegal participants, and undocumented persons/participants. Authors have been ethics reviewers and/or researchers of undocumented participants. Drawing on these experiences throughout the article, they provide reflexively composed narrative interludes. Methodological and ethical considerations and strategies in the areas of Culturally Responsive Relational Reflexive Ethics (CRRRE) oriented research, anonymity/confidentiality, and consent are advanced.

Culture, Behavior, and Personality

Article

Feb 1979

Arnold A. Rogow

Person-Oriented Research Ethics: Integrating Relational and Everyday Ethics in Research

Abstract

No full-text available

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