Journey of ethics - Conducting collaborative research with people with dementia.

This paper explores some of the ethical considerations of working collaboratively with people with dementia within research based upon the experiences, challenges and learning from three doctoral research studies. Focus is on the research relationship with participants and gatekeepers, the importance of setting and access, the power relations within the research and ways in which people with dementia can be supported to be active and have a voice in research. This sits within an ethical framework of principalist ethics and ethics of care to guide not only how research is planned ethically and with consideration of participants, but also how this can support decisions made in situ. The aim is to share, based upon these three studies, ways of managing and working through some of the ethical consideration to support researchers in their decisions in planning and conducting research with people with dementia as active collaborators.

Desafios atuais da prática em pesquisa qualitativa: reflexões e posicionamento do pesquisador / Desafíos actuales de la práctica de la investigación cualitativa: reflexiones y posicionamiento del investigador / Challenges on current practice of qualitative research: reflections and researcher positioning

Este artigo parte do discurso provocativo feito pelo pesquisador Svend Brinkmann na 17ª Conferência sobre Pesquisa Qualitativa em Saúde para refletir criticamente sobre três desafios enfrentados na prática atual da pesquisa qualitativa e sobre o papel do pesquisador nesse contexto. São abordadas questões éticas, de reconhecimento e validade da pesquisa e relacionadas ao rigor metodológico que destacam o papel do posicionamento do pesquisador para o reconhecimento e a valorização da pesquisa qualitativa, em especial na área de pesquisa em saúde. (AU)

Este artículo se basa en el provocador discurso pronunciado por el investigador Svend Brinkmann en la 17ª Conferencia de Investigación Cualitativa en Salud para reflexionar críticamente sobre tres desafíos enfrentados en la práctica actual de la investigación cualitativa y el papel del investigador en ese contexto. Se abordan cuestiones éticas, de reconocimiento y vigencia de la investigación y relacionadas con el rigor metodológico, destacando el papel del puesto de investigador para el reconocimiento y valorización de la investigación cualitativa, especialmente en el área de la investigación en salud. (AU)

Building on the provocative speech given by researcher Svend Brinkmann at the 17th Qualitative Health Research Conference, this paperwork aims to critically think over three challenges faced during the current practice of qualitative research, and also the role of the researcher in this context. We have taken into consideration ethical issues and issues of recognition and validation of the research, as well as issues related to methodological rigor, which highlight the role of the researcher in the recognition and valuation of qualitative research, particularly in the health research field. (AU)

Critical methodological considerations in recruiting and engaging non-native English speaking workers with a head injury: a Canadian perspective.

OBJECTIVE: Non-native English speaking workers with a mild work-related traumatic brain and/or head injury are a vulnerable and underrepresented population in research studies. The researchers present their experiences with recruiting and performing qualitative interviews with non-native English speaking individuals with a work-related mild traumatic brain injury, and provide recommendations on how to better include this vulnerable population in future research studies. This paper presents considerations regarding ethics, recruitment challenges, interview preparation and debriefing, sex & gender and language and cultural issues must be made when working with this vulnerable population. RESULTS: The researchers discuss critical issues and provide recommendations in recruiting and engaging with non-native English language workers including ethics, recruitment challenges, interview preparation and debriefing, sex & gender and language, and cultural considerations that must be made when working with this population. The study recommendations advise investigators to spend more time to learn about the non-native English participants in the mild wrTBI context, to be familiar with the vulnerabilities and specific circumstances that these workers experience. By increasing their awareness of the challenging facing this vulnerable population, the intention is to provide better care and treatment options through evidence-based research and practice.

Why genomics researchers are sometimes morally required to hunt for secondary findings.

BACKGROUND: Genomic research can reveal 'unsolicited' or 'incidental' findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings (for example, by conducting additional analyses to search for findings outside the scope of the research question). MAIN TEXT: This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt for genomic secondary findings. We begin by showing how the duty to disclose individual research findings can be grounded in the duty of easy rescue. Next, we describe a parallel moral duty, also grounded in the duty of easy rescue, to actively hunt for such information. We then consider six possible objections to our argument, each of which we find unsuccessful. Some of these objections provide reason to limit the scope of the duty to look for secondary findings, but none provide reason to reject this duty outright. CONCLUSIONS: We argue that under a certain range of circumstances, researchers are morally required to hunt for these kinds of secondary findings. Although these circumstances may not currently obtain, genomic researchers will likely acquire an obligation to hunt for secondary findings as the field of genomics continues to evolve.

Ethical sensitivity in co-production: Openness and doubt when young women participate in research.

During the past years, co-production in medical and health related research has gained more focus. The purpose is to ensure that researchers - and the individuals that the research is relevant and has consequences for - will develop and produce the research, and accordingly also, the results together. In our understanding, the eventual success of co-production in research has to be based on some sort of sensitivity to and negotiation as to the perspectives and categories describing the research theme. In this article, based on empirical data from interviews with adolescents participating in treatment for lifestyle change, we explore the significance of the researchers' sensitivity for adolescents' resistance during the interview process. We argue that this sensitivity is embodied and requires ethical reflection helping the researcher to discover ethical moments. By being sensitive as to participants' resistance in the interview situation, we argue that new knowledge is thereby developed.

In Experimental Hand Transplantation, Whose Views About Outcomes Should Matter Most?

Consent to any experimental procedure, even when offered as therapeutic, involves extensive discussion between patient-subjects and clinician-researchers. Decision making should be shared with a focus on potential risks and benefits of enrolling in a protocol. Just as patients who underwent nonexperimental interventions might experience regret or reconsider autonomously made choices, patient-subjects who are undergoing or who have undergone experimental therapies should be afforded latitude to reconsider their decisions. Although clinician-researchers tend to be deeply invested in gathering data about patient-subjects' experiences, they are obligated to express respect for patient-subjects' fundamental right to stop being enrolled in research.

Cancer Clinical Trial Patient-Participants' Perceptions about Provider Communication and Dropout Intentions.

Objective: To study the relationship between cancer patient/research participants' perceptions of communication with their research nurse and doctor and (1) participants' thoughts of dropping out from their cancer clinical trials (CCTs), (2) how informed they felt before and during their clinical trial participation, and (3) trust in their researchers. Methods: We surveyed 110 adult cancer patients who were enrolled in cancer clinical trials by using 15 modified items from the Medical Communication Competence Scale measuring information exchange and relational communication. Retention was measured by two items: ever thought about dropping out (yes/no) and likelihood of remaining enrolled in the clinical trial (5-point Likert item). We asked how well informed about the trial participants felt at enrollment, at the date they filled out the survey, and about changes in the trial. Results: Patient-participants with thoughts of dropping out from their CCTs rated their communication with research doctors lower than those who did not have thoughts of dropping out (4.14 versus 4.46, t = 2.22, p = 0.03). Patient-participants' intention to remain enrolled was correlated with more favorable scores on relational communication (such as contributing to a trusting relationship and showing compassion) with research doctors (r = 0.20, p = 0.04) and nurses (r = 0.25, p = 0.01). Communication with doctors was also associated with how informed patient-participants felt during their clinical trials. Conclusions: Relational communication with research doctors and nurses was significantly related to thoughts about remaining enrolled or dropping out of a clinical trial among adult participants in cancer treatment clinical trials. Practice Implications: Relational communication with cancer patients advances retention in research.

Person-oriented research ethics: integrating relational and everyday ethics in research.

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 article presents a "person-oriented research ethics" approach. Five practical guideposts of person-oriented research ethics are identified, as follows: (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.

Unraveling the Mobilization of Memory in Research With Refugees.

In this article, we explore how narrative accounts of trauma are co-constructed through the interaction between researcher and participant. Using a narrative multiple-case study with Kurdish refugee families, we address how this process takes place, investigating how researcher and participants were engaged in relational, moral, collective, and sociopolitical dimensions of remembering, and how this led to the emergence of particular ethical questions. Case examples indicate that acknowledging the multilayered co-construction of remembering in the research relationship profoundly complicates existing deontological guidelines that predominantly emphasize the researcher's responsibility in sensitively dealing with participants' alleged autobiographical trauma narratives. Instead, our analysis invites qualitative researchers to engage in a continued, context-specific ethical reflection on the potential risks and benefits that are invoked in studies with survivors of collective violence.

Challenges in accessing and interviewing participants with severe mental illness.

Background Interviews are widely used in qualitative research to collect data. However, little has been written about interviewing people with severe mental illness (SMI). Aim To report and analyse an experience of addressing the ethical and practical challenges of interviewing people with SMI. Discussion Semi-structured interviews were conducted as part of a doctoral study to explore how service users and healthcare professionals built relationships with each other. Conclusion Although interviewing participants with SMI was challenging, rich data illustrating their experiences were gathered. Careful planning around ethical considerations, such as obtaining informed consent, was required to maximise the opportunities to gather in-depth information during the interviews. The relationship established between researcher and the participants assisted with sensitive disclosures and allowed participants to tell their stories. Implications for research This paper provides strategies to help guide researchers planning interviews with vulnerable populations, including those with SMI. These strategies include how to discuss sensitive issues and promote engagement. Listening to participants' life stories is an intense experience, requiring support for the interviewer to stay neutral during interviews. It is also important to be aware of the differences between the roles of nurse and nurse researcher before undertaking in-depth qualitative interviews, particularly with vulnerable participants.

Participants' safety versus confidentiality: A case study of HIV research.

Background When conducting qualitative research, participants usually share lots of personal and private information with the researcher. As researchers, we must preserve participants' identity and confidentiality of the data. Objective To critically analyze an ethical conflict encountered regarding confidentiality when doing qualitative research. Research design Case study. Findings and discussion one of the participants in a study aiming to explain the meaning of living with HIV verbalized his imminent intention to commit suicide because of stigma of other social problems arising from living with HIV. Given the life-threatening situation, the commitment related to not disclosing the participant's identity and/or the content of the interview had to be broken. To avoid or prevent suicide, the therapist in charge of the case was properly informed about the participant's intentions. One important question arises from this case: was it ethically appropriate to break the confidentiality commitment? Conclusion confidentiality could be broken if a life-threatening event is identified during data collection and participants must know that. This has to be clearly stated in the informed consent form.

Trust me, I'm a researcher!: The role of trust in biomedical research.

In biomedical research lack of trust is seen as a great threat that can severely jeopardise the whole biomedical research enterprise. Practices, such as informed consent, and also the administrative and regulatory oversight of research in the form of research ethics committees and Institutional Review Boards, are established to ensure the protection of future research subjects and, at the same time, restore public trust in biomedical research. Empirical research also testifies to the role of trust as one of the decisive factors in research participation and lack of trust as a barrier for consenting to research. However, what is often missing is a clear definition of trust. This paper seeks to address this gap. It starts with a conceptual analysis of the term trust. It compares trust with two other related terms, those of reliance and trustworthiness, and offers a defence of Baier's attribute of 'good will' a basic characteristic of trust. It, then, proceeds to consider trust in the context of biomedical research by examining two questions: First, is trust necessary in biomedical research?; and second, do increases in regulatory oversight of biomedical research also increase trust in the field? This paper argues that regulatory oversight is important for increasing reliance in biomedical research, but it does not improve trust, which remains important for biomedical research. It finishes by pointing at professional integrity as a way of promoting trust and trustworthiness in this field.

Chaco Canyon Dig Unearths Ethical Concerns.

The field of paleogenomics (the study of ancient genomes) is rapidly advancing, with more robust methods of isolating ancient DNA and increasing access to next-generation DNA sequencing technology. As these studies progress, many important ethical issues have emerged that should be considered when ancient Native American remains, whom we refer to as ancestors, are used in research. We highlight a 2017 article by Kennett et al., "Archaeogenomic evidence reveals prehistoric matrilineal dynasty," that brings to light several ethical issues that should be addressed in paleogenomics research. The study helps elucidate the matrilineal relationships in ancient Chacoan society through ancient DNA analysis. However, we, as Indigenous researchers and allies, raise ethical concerns with the study's scientific conclusions that can be problematic for Native American communities: (1) the lack of tribal consultation, (2) the use of culturally insensitive descriptions, and (3) the potential impact on marginalized groups. Further, we explore the limitations of the Native American Graves Protection and Repatriation Act, which addresses repatriation but not research, because clear ethical guidelines have not been established for research involving Native American ancestors, especially those deemed "culturally unaffiliated." Multiple studies of "culturally unaffiliated" remains have been initiated recently, so it is imperative that researchers consider the ethical ramifications of paleogenomics research. Past research indiscretions have created a history of mistrust and exploitation in many Native American communities. To promote ethical engagement of Native American communities in research, we therefore suggest careful attention to ethical considerations, strong tribal consultation requirements, and greater collaborations among museums, federal agencies, researchers, scientific journals, and granting agencies.

Sensitive Interviewing in Qualitative Research.

In this paper we focus on important considerations when planning and conducting qualitative interviews on sensitive topics. Drawing on experiences of conducting interviews with dementia caregivers, a framework of essential elements in qualitative interviewing was developed to emphasize study participants' needs while also providing guidance for researchers. Starting with a definition of sensitive research, the framework includes preparing for interviews, interacting with gatekeepers of vulnerable groups, planning for interview timing, and location, building relationships and conducting therapeutic interactions, protecting ethically vulnerable participants, and planning for disengagement. This framework has the potential to improve the effectiveness of sensitive interviewing with vulnerable groups. © 2016 Wiley Periodicals, Inc.

Champions for social change: Photovoice ethics in practice and 'false hopes' for policy and social change.

Photovoice methodology is growing in popularity in the health, education and social sciences as a research tool based on the core values of community-based participatory research. Most photovoice projects state a claim to the third goal of photovoice: to reach policy-makers or effect policy change. This paper examines the concerns of raising false hopes or unrealistic expectations amongst the participants of photovoice projects as they are positioned to be the champions for social change in their communities. The impetus for social change seems to lie in the hands of those most affected by the issue. This drive behind collective social action forms, what could be termed, a micro-social movement or comparative interest group. Looking to the potential use of social movement theory and resource mobilisation concepts, this paper poses a series of unanswered questions about the ethics of photovoice projects. The ethical concern centres on the focus of policy change as a key initiative; yet, most projects remain vague about the implementation and outcomes of this focus.

How Not to Let Secrets Out When Conducting Qualitative Research With Dyads.

Confidentiality is one of the cornerstones of research involving human participants. Researchers are the frontline gatekeepers of their participants' right to confidentiality, and situations can arise that challenge this responsibility. This is the case when individuals who have shared a common experience (i.e., dyads) are interviewed separately, but interview results are disseminated within the context of dyads. Based on our experience of conducting research with dyads and given how little literature is available to serve as guide, we set out to write this article to share the knowledge we acquired and the solutions we found. We will describe both the ethical challenges and the methodological decisions involved in conducting qualitative research with dyads. The article also describes different modalities of dyadic analysis, their benefits and drawbacks. This endeavor seems especially relevant as research with dyads is emerging in several domains involving couples, families, caregivers and health.

A Trust-Based Pact in Research Biobanks. From Theory to Practice.

Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as a guiding principle instead of information. Here, we analyse one of these proposals, based on a Participation Pact, which is already being offered to patients at the Istituto Europeo di Oncologia, a comprehensive cancer hospital in Milan, Italy.

Informed consent in paediatric critical care research--a South African perspective.

BACKGROUND: Medical care of critically ill and injured infants and children globally should be based on best research evidence to ensure safe, efficacious treatment. In South Africa and other low and middle-income countries, research is needed to optimise care and ensure rational, equitable allocation of scare paediatric critical care resources. Ethical oversight is essential for safe, appropriate research conduct. Informed consent by the parent or legal guardian is usually required for child research participation, but obtaining consent may be challenging in paediatric critical care research. Local regulations may also impede important research if overly restrictive. By narratively synthesising and contextualising the results of a comprehensive literature review, this paper describes ethical principles and regulations; potential barriers to obtaining prospective informed consent; and consent options in the context of paediatric critical care research in South Africa. DISCUSSION: Voluntary prospective informed consent from a parent or legal guardian is a statutory requirement for child research participation in South Africa. However, parents of critically ill or injured children might be incapable of or unwilling to provide the level of consent required to uphold the ethical principle of autonomy. In emergency care research it may not be practical to obtain consent when urgent action is required. Therapeutic misconceptions and sociocultural and language issues are also barriers to obtaining valid consent. Alternative consent options for paediatric critical care research include a waiver or deferred consent for minimal risk and/or emergency research, whilst prospective informed consent is appropriate for randomised trials of novel therapies or devices. We propose that parents or legal guardians of critically ill or injured children should only be approached to consent for their child's participation in clinical research when it is ethically justifiable and in the best interests of both child participant and parent. Where appropriate, alternatives to prospective informed consent should be considered to ensure that important paediatric critical care research can be undertaken in South Africa, whilst being cognisant of research risk. This document could provide a basis for debate on consent options in paediatric critical care research and contribute to efforts to advocate for South African law reform.