Although in the US there have been dozens of subpoenas seeking information gathered by academic researchers under a pledge of confidentiality, few cases have garnered as much attention as the two sets of subpoenas issued to Boston College seeking interviews conducted with IRA operatives who participated in The Belfast Project, an oral history of The Troubles in Northern Ireland. For the researchers and participants, confidentiality was understood to be unlimited, while Boston College has asserted that it pledged (...) class='Hi'>confidentiality only “to the extent American law allows.” This a priori limitation to confidentiality is invoked by many researchers and universities in the United States, Canada and Great Britain, but there has been little discussion of what the phrase means and what ethical obligations accompany it. An examination of the researchers’ and Boston College’s behaviour in relation to the subpoenas provides the basis for that discussion. We conclude that Boston College has provided an example that will be cited for years to come of how not to protect research participants to the extent American law allows. (shrink)

Research confidentiality in Britain is under attack. Indeed, in some quarters the ‘Law of the Land’ doctrine that absolutely subjugates research ethics to law is already a fait accompli. To illustrate the academic freedom issues at stake, the article discusses: the Cambridge Psychology Research Ethics Committee’s ban of interview questions about a research participant’s involvement in criminal acts; the awarding of damages against Exeter University when it reneged on its agreement to uphold a doctoral student’s (...) guarantee of ‘absolute confidentiality’ in his research on assisted suicide; and the controversy around the UK government’s attempt to obtain confidential records from the Belfast Project − an oral history of paramilitaries involved in the Troubles in Northern Ireland. The article urges British researchers to practice – or, at least, defend the academic freedom of their colleagues to practice – the ‘ethics-first’ doctrine of strict confidentiality that several North American disciplinary associations encourage. (shrink)

Protecting confidentiality is an essential value in all human relationships, no less in medical practice and research.1 Doctor-patient and researcher-participant relationships are built on trust and on the understanding those patients' secrets will not be disclosed.2 However, this confidentiality can be breached in some situations where it is necessary to meet a strong conflicting duty.3Confidentiality, in a general sense, has received much interest in Islamic resources including the Qur'an, Sunnah and juristic writings. However, medical and research (...) confidentiality have not been explored deeply. There are few fatwas about the issue, despite an increased effort by both individuals and Islamic medical organizations to use these institutional fatwas in their research.Infringements on confidentiality make up a significant portion of institutional fatwas, yet they have never been thoroughly investigated. Moreover, the efforts of organizations and authors in this regard still require further exploration, especially on the issue of research confidentiality.In this article, we explore medical and research confidentiality and potential conflicts with this practice as a result of fatwas released by international, regional, and national Islamic Sunni juristic councils. We discuss how these fatwas affect research and publication by Muslim doctors, researchers, and Islamic medical organizations.We argue that more specialized fatwas are needed to clarify Islamic juristic views about medical and research confidentiality, especially the circumstances in which infringements on this confidentiality are justified. (shrink)

Protecting confidentiality is an essential value in all human relationships, no less in medical practice and research.1 Doctor‐patient and researcher‐participant relationships are built on trust and on the understanding those patients' secrets will not be disclosed.2 However, this confidentiality can be breached in some situations where it is necessary to meet a strong conflicting duty.3Confidentiality, in a general sense, has received much interest in Islamic resources including the Qur'an, Sunnah and juristic writings. However, medical and research (...) confidentiality have not been explored deeply. There are few fatwas about the issue, despite an increased effort by both individuals and Islamic medical organizations to use these institutional fatwas in their research.Infringements on confidentiality make up a significant portion of institutional fatwas, yet they have never been thoroughly investigated. Moreover, the efforts of organizations and authors in this regard still require further exploration, especially on the issue of research confidentiality.In this article, we explore medical and research confidentiality and potential conflicts with this practice as a result of fatwas released by international, regional, and national Islamic Sunni juristic councils. We discuss how these fatwas affect research and publication by Muslim doctors, researchers, and Islamic medical organizations.We argue that more specialized fatwas are needed to clarify Islamic juristic views about medical and research confidentiality, especially the circumstances in which infringements on this confidentiality are justified. (shrink)

Attention and disruptive behavior disorders present considerable challenges for children and their parents. These challenges have led to the development of parenting programs; however, there is a paucity of literature that discusses the ethical dilemmas parent training researchers face. This article reviews ethical principles and professional standards relevant to parent training research and provides case material to illustrate the challenge of balancing ethical adherence and empirical rigor using three ethical issues that commonly arise in parent training research. In (...) particular, this article focuses on ethical issues surrounding confidentiality in a group setting, use of control groups, and limiting changes in medication/treatment status outside of the treatment protocol. (shrink)

Ethical issues regarding research biobanks continue to be a topic of intense debate, especially issues of confidentiality, informed consent, and child participation. Although considerable empirical literature concerning research biobank ethics exists, very little information is available regarding the opinions of medical professionals doing genetics research from the Middle East, especially Arabic speaking countries. Ethical guidelines for research biobanks are critically needed as some countries in the Middle East are starting to establish national research biobanks. (...) Islam is the dominant religion in these countries, and it affects people’s behavior and influences their positions. Moreover, communities in these countries enjoy a set of customs, traditions and social norms, and have social and familial structures that must be taken into account when developing research policies. We interviewed 12 medical professionals from the Middle East currently working with stored tissue samples to document their opinions. We found general agreement. Participants’ primary concerns were similar to the views of researchers internationally. Since children tend to represent a high percentage of Middle Eastern populations, and because children’s bodies are not just small adult bodies, the interviewed professionals strongly believed that it is imperative to include children in biobank research. Participants generally believed that protecting confidentiality is socially very important and that informed consent/assent must be obtained from both adult and child participants. This study provides a starting point for additional studies. (shrink)

England and Wales are moving toward a model of ‘opt out’ for use of personal confidential data in health research. Existing research does not make clear how acceptable this move is to the public. While people are typically supportive of health research, when asked to describe the ideal level of control there is a marked lack of consensus over the preferred model of consent. This study sought to investigate a relatively unexplored difference between the consent model that (...) people prefer and that which they are willing to accept. It also sought to explore any reasons for such acceptance. (shrink)

Deficiencies or unclear statements in consent forms used for research with human participants may lead to publicly-funded research data being unsuitable for sharing with other researchers. Long-term data use is encouraged or required by many of the UK research councils and other funding bodies. Researchers may fail to address long-term use and sharing of data when obtaining informed consent and when arranging to keep data obtained from participants confidential. Sharing data should not compromise confidentiality if care (...) is taken to anonymize information where this is needed or has been explicitly requested. Whilst researchers should consider all potential uses of their research data in confidentiality and consent agreements, research ethics committees can provide better guidance by pointing out to researchers that long-term use, preservation and sharing of research data should be taken into account when informing participants and obtaining their consent. (shrink)

Meeting appropriate ethical standards for research involving human participants, mean ensuring confidentiality. It is assumed that the research participant will accept the safeguarding protocols necessary to ensure confidentiality. This assumption however oversimplifies the variation of motivations that goes into participants’ decisions to participate in research. Drawing on reflections from my fieldwork experience in Ghana, I answer the questions: Why do research participants reject confidentiality? What ethical position can one take when the researcher and (...) the researched have conflicting perspectives about confidentiality? I contend that participants with personal stake refuse confidentiality when they want to be acknowledged for their data. Rejecting confidentiality is however, embedded in the individual perspective, cultural, and political context of the study area. The ethical concerns of such refusal can be ameliorated if confidentiality is nuanced to include six categorically distinct but mutually non-exclusive stages: research-planning, ongoing-information, writing-up, reality-after-research, differential-disseminations, and no-confidentiality-clause. The paper further argues that whilst maintaining institutional allegiance in this matter is crucial, employing confidentiality should lie at the intersection of participants’ motivation for taking part in the research, the socio-cultural-specific-context of the study location and the nature of the topic being explored. (shrink)

Recruiting patients into clinical research is essential for the advancement of medical knowledge. However, when the physician undertaking the care of the patient is also responsible for recruitment into clinical research, a situation arises of an inter-role breach of confidentiality which is distinguishable from other conflicts of interest. Such discord arises as the physician utilizes confidential information obtained within the therapeutic relationship beyond its primary objective, and safeguards ought to be observed in order to avert this important, (...) and generally overlooked, problem. The moral worth of the pledge of confidentiality is based not on its innate value but on its being a promise on which subsequent interactions and disclosures are founded. Within the patient-doctor interaction, confidentiality is an important facet of the promised fidelity and, as such, a loose interpretation of the notion threatens the essence of the relationship, and any violation thereof requires compelling moral justification. To avoid conflict, patients' confidential information ought not be used for the purpose of recruitment, which needs to be undertaken through general education and non-directed appeals, and a preliminary consent to be approached for research should be obtained from the patient prior to her being identified as a suitable research subject. Securing this prior consent would avoid one source of potential, albeit unintended, coercion. (shrink)

Answering important public health questions often requires collection of sensitive information about individuals. For example, our understanding of how HIV is transmitted and how to prevent it only came about with people's willingness to share information about their sexual and drug-using behaviors. Given the scientific need for sensitive, personal information, researchers have a corresponding ethical and legal obligation to maintain the confidentiality of data they collect and typically promise in consent forms to restrict access to it and not to (...) publish identifying data.The interests of others, however, can threaten researchers' promises of confidentiality when legal demands are made to access research data. In some cases, the subject of the litigation is tightly connected to the research questions, and litigants' interest in the data is not surprising. Researchers conducting studies on tobacco or occupational or other chemical exposures, for example, are relatively frequent targets of subpoenas. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery system would (...) be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery system would (...) be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

While it is acknowledged that there is a need for more qualitative research on suicide, it is also clear that the ethics of undertaking such research need to be addressed. This article uses the case study of the authors’ experience of gaining ethics approval for a research project that asks people what it is like to feel suicidal to (a) analyse the limits of confidentiality and anonymity and (b) consider the ways in which the process of (...) ethics review can shape and constrain suicide research. This leads to a discussion of the ways in which ethics committees assess and monitor qualitative research more generally and some preliminary suggestions for how this might be improved. (shrink)

Health research raises profound concerns of an ethical and legal nature — concerns primarily centered on how to balance researchers’ quest for scientific discovery against societal interest in protecting individuals whose participation makes the discovery possible. Particularly in a country such as Nigeria, which, not too long ago, suffered major abuse of research subjects, deploying a robust ethicolegal regime capable of curbing excesses and protecting research participants whilst contemporaneously not frustrating scientific progress is not an easy task. (...) This is even more critical in the context of novel scientific endeavors, such as biobanking and genomic research, particularly when a significant pool of potential donors are inadequately informed about the processes involved in their participation or the result. (shrink)

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. (shrink)

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

Not many African countries have been able to develop a robust system for regulating health research within their respective jurisdictions, particularly in the realm of biobanking and genomics. This is not without reason. Aside from underdevelopment and all that it entails or perhaps in consequence thereof, countries in the region have been unable to make significant strides in medical research. But there are exceptions. Amongst the few seeming success stories is Uganda. Nonetheless, although the country has developed what (...) appears to be a functional framework to govern genomic research and biobanking, the consistency of key provisions with international standards, especially those pertaining to privacy of research participants and confidentiality of their health information, is not at all clear. Yet, making this determination – the main objective of this article – is critical in determining the adequacy of protection available to human research subjects in the country. (shrink)

Health information by its nature is personal and sensitive. At the same time, significant public value has resulted from research with health records about determinants of health and effective provision of health services. In Canada, certain legislation and processes have been established to balance the individual's right to privacy and the public good associated with analysis of health information.My purpose is to describe privacy and confidentiality practices in Canada with respect to access to health data for research (...) purposes. I provide an overview of the Canadian health care system and the legislative framework used to regulate research related to health information and Canada's major national data bases. Then I describe the confidentiality and privacy policies and procedures of Statistics Canada, of the Canadian Institute for Health Information, and of health policy research organizations in three provinces. I conclude with comments on some current issues in health information in Canada. (shrink)

Health information by its nature is personal and sensitive. At the same time, significant public value has resulted from research with health records about determinants of health and effective provision of health services. In Canada, certain legislation and processes have been established to balance the individual's right to privacy and the public good associated with analysis of health information.My purpose is to describe privacy and confidentiality practices in Canada with respect to access to health data for research (...) purposes. I provide an overview of the Canadian health care system and the legislative framework used to regulate research related to health information and Canada's major national data bases. Then I describe the confidentiality and privacy policies and procedures of Statistics Canada, of the Canadian Institute for Health Information, and of health policy research organizations in three provinces. I conclude with comments on some current issues in health information in Canada. (shrink)

Bernhard and Young (Journal of Academic Ethics, 7, 175-191, 2009) allege that a myth of confidentiality plagues research in North America because of the absence of statute-based legal protections and the requirements of some REBs to limit confidentiality to the extent permitted by law. In this commentary we describe statute-based protections for research confidentiality available in the United States, clarify the legal situation regarding research confidentiality in Canada, and explain that REBs that require (...) confidentiality to be limited by law are imposing a doctrine that is not required by the TCPS and may violate researchers’ academic freedom. The paper laments how excessive REB risk aversion and inaction by the granting agency Presidents has created a situation where some REBs are encouraging researchers to download research risks to research participants and forcing researchers to choose between exposing themselves to the prospect of going to jail to protect confidentiality, watering down their research objectives, or conducting vanilla research rather than engaging in controversial and/or sensitive areas of study. The paper urges the granting agency Presidents to seek legislative change to protect research participants who provide information that could cause them harm if their identity were to be revealed. (shrink)

Child and adolescent researchers must balance increasingly complex sets of ethical, legal, and scientific standards when investigating child and adolescent mental disorders. Few guidelines are available. One mechanism that provides the investigator immunity from legally compelled disclosure of research records is described. However, discretion must be exercised in its use, especially with regard to abuse reporting, voluntary disclosure of abuse, and protection of research data. Examples of discretionary issues in the use of the certificate of confidentiality are (...) provided. (shrink)

In a large proportion of health care research based on the retrospective review of records, minimal breach of patient confidentiality appears to be inevitable. This occurs at initial identification of and access to the chart, selected on the basis of the condition under investigation, and while individual identifiability can be blocked at subsequent stages, at this point it does occur. Prospective individual consent is impractical because often neither the desirability nor the specific subject of the research is (...) known at the time of making the record, and retrospective patient tracing to obtain it is often impossible. I argue that the benefit of the research outweighs the minimal breach of confidentiality, and that in my own jurisdiction, this appears to be envisaged and accepted in Canadian law. (shrink)

Confidentiality represents a core principle of research ethics and forms a standard practice in social research. However, what should a researcher do if they learn about illegal activities or harm during the research process? Few systematic studies consider researchers’ attitudes and reactions in such situations. This paper analyzes this issue on the basis of in-depth interviews with Polish sociologists and anthropologists who conduct qualitative research with vulnerable participants. It discusses the experiences and opinions of researchers (...) concerning the maintenance or breaking of confidentiality in the context of knowledge about illegal activities and harm. It also examines the ways in which the researchers justified their decisions. Most of my interviewees respected confidentiality in spite of knowledge of crime or harm, and referred to their epistemological perspectives regarding the role of the researcher, implicit consequentialist ethical reasoning and personal values. Where researchers did break confidentiality, this owed to their personal values and willingness to protect their informants, especially in cases of minor levels of harm as opposed to serious crime. Therefore, their experiences indicate the failure of both obligatory unconditional assurances of confidentiality and the requirement for researchers to assure confidentiality to the extent permitted by law. I argue that researchers do not need constrictive and potentially punitive rules about confidentiality, but rather sensitizing frameworks about how to contemplate and anticipate the many complexities and moral shadings of situations in the field. (shrink)

This article challenges the importance and necessity of confidentiality, which are often taken for granted, and questions whether the default promise of confidentiality to all participants, particularly in educational research, could in fact be an unnecessary concern. This article begins by reviewing the difference in the way confidentiality is handled in different fields and the applicability of some underlying assumptions. This is followed by an explanation of why confidentiality is investigated in the sense of anonymity (...) in this article. Then the article draws on an empirical study where original researchers and their original participants were interviewed about their views on anonymity. Lastly, the contradiction between the promises of confidentiality and the recognition of a participant’s contribution is highlighted. The article concludes with a call for more empirical observation and investigation into the importance of confidentiality. (shrink)

In “Advisory Opinion on Confidentiality, Its Limits and Duties to Others” the Canadian Interagency Advisory Panel on Research Ethics (PRE) articulates a rationale for a priori limitations to research confidentiality, based largely on putative legal duties to violate confidentiality in certain circumstances. We argue that PRE promotes a “Law of the Land” doctrine of research ethics that is but one approach to resolving potential conflicts between law and research ethics. PRE emphasises risks that (...) have never materialized, and ignores jurisprudence on challenges to research confidentiality. When we examine what the courts have actually done with research-based claims of privilege, we find they clearly recognize and affirm researchers’ ethical obligations to maintain strict confidentiality and protect research participants. Ironically, the one exception – where the court ordered that information be disclosed – occurred precisely because the researchers had limited confidentiality. The passive approach PRE espouses leaves vital questions about what protecting confidentiality to the “full extent possible in law” means, and leaves the impression that academics should accept whatever limitations the courts may impose without participating in the courtroom dialogue determining where those limits are drawn. In contrast, we believe confidentiality is so important to the protection of research participants and the integrity of the research enterprise that it is worth fighting for. The “ethics-first” doctrine of “strict confidentiality” we describe adheres to the social sciences’ and humanities’ longstanding commitment to research confidentiality and duty to the research participant. (shrink)

Confidentiality is one of the foundations on which psychotherapy is built. Limitations on confidentiality in the therapeutic process have been explained and explored by many authors and organizations. However, controversy and confusion continue to exist with regard to the limitations on confidentiality in situations where clients are considering their options at the end of life and after a client has died. This article reviews these 2 areas and provides some suggestions for future research.

Researchers studying health systems in low-income countries face a myriad of ethical challenges throughout the entire research process. In this article, we discuss one of the greatest ethical challenges that we encountered during our fieldwork in West Africa: the difficulty of protecting the confidentiality of participants while locally disseminating results of health systems research to stakeholders. This reflection is based on experiences of authors involved in conducting evaluative research of interventions aimed at improving health systems in (...) West Africa. Our observation and collaboration with the research projects’ stakeholders informed our analysis. Examples from two research projects illustrate the issues raised. We found that in some cases there is a risk that local stakeholders may be able to identify research participants, or at least groups of participants, during the dissemination of results, even if they are anonymized. Four factors can interact and influence this challenge: 1) hierarchical structure, 2) small milieu, 3) immersion in a few sites, and 4) vested interests of decision-makers. For example, local stakeholders can sometimes find out when and where the data were collected. Moreover, health systems, especially rural healthcare centres, in West African countries can be small settings, so people often know each other. Some types of participants have unique characteristics or positions in the health system that may make them more easily identifiable by local stakeholders familiar with the environment. We identified a number of potential strategies that can help researchers minimize this difficulty and improve ethical research practices. These strategies pertain to the development of the study design, the process of obtaining informed consent, the dissemination of results, and the researchers’ reflexivity. Researchers must develop and adopt strategies that enable them to respect their promise of confidentiality while effectively disseminating sometimes sensitive results. Reflections surrounding ethical issues in global health research should be deepened to better address how to manage competing ethical responsibilities while promoting valuable research uptake. (shrink)

Community based research is conducted by, for, and with the participation of community members, and aims to ensure that knowledge contributes to making a concrete and constructive difference in the world (The Loka Institute 2002). Yet decisions about research ethics are often controlled outside the research community itself. In this analysis we grapple with the imposition of a community confidentiality clause and the implications it had for consent, confidentiality, and capacity in a province-wide community based (...) research project. Through untangling these implications we provide recommendations for reframing how to think about research ethics and strategies for enabling research ethics’ processes to be more responsive to and respectful of community-based research. (shrink)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides (...) a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. (shrink)

In the practice of medicine there has long been a conflict between patient management and respect for patient autonomy. In recent years this conflict has taken on a new form as patient management has increasingly been shifted from physicians to insurers, employers, and health care bureaucracies. The consequence has been a diminshment of both physician and patient autonomy and a parallel diminishment of medical record confidentiality. Although the new managers pay lip service to the rights of patients to (...) class='Hi'>confidentiality of their records, in fact they advocate very liberal medical records access policies. They argue that a wide range of parties has a need to know the contents of individually identifiable medical records in order to control costs, promote quality of care, and undertake research in the public interest. Broad interpretations of the need to know, however, are at odds with strict interpretations of the right to confidentiality. Strict confidentiality policies require that, with few exceptions, patient consent be obtained whenever a patient's record is used outside the treatment context. The traditional criterion for overriding the consent requirement has been that without the override some harm would directly result. This rule is now challenged by the claim that patients have a duty to make their records available for a wide range of research and public health purposes. The longstanding tension between physician responsibility for patient welfare and respect for patient autonomy is being replaced by a debatable requirement that both physician and patient autonomy be subordinated to the goals of data collection and analysis. (shrink)

Qualitative fieldwork research on sensitive topics sometimes requires that interviewees be granted confidentiality and anonymity. When qualitative researchers later publish their findings, they must ensure that any statements obtained during fieldwork interviews cannot be traced back to the interviewees. Given these protections to interviewees, the integrity of the published findings cannot usually be verified or replicated by third parties, and the scholarly community must trust the word of qualitative researchers when they publish their results. This trust is fundamentally (...) abused, however, when researchers publish articles reporting qualitative fieldwork data that they never collected. Using only publicly available information, I argue that a 2017 article in an Elsevier foreign policy and international relations journal presents anonymised fieldwork interviews that could not have occurred as described. As an exercise in post-publication peer review (PPPR), this paper examines the evidence that calls into question the reliability of the putative fieldwork quotations. I show further that the 2017 article is not a unique case. The anonymity and confidentiality protections common in some areas of research create an ethical problem: the protections necessary for obtaining research data can be used as a cover to hide substandard research practices as well as research misconduct. (shrink)

In this paper we consider the use of cases in medical ethics research and teaching. To date, there has been little discussion about the consent or confidentiality requirements that ought to govern the use of cases in these areas. This is in marked contrast to the requirements for consent to publish cases in clinical journals, or to use personal information in research. There are a number of reasons why it might be difficult to obtain consent to use (...) cases in ethics. Many cases concern people who are incompetent, and thus unable to give consent. Often the material is of a sensitive nature, it is not clear who should give consent, or the ethicist has no access to those involved. We argue that the use of cases in ethics research and teaching can be justified by appeal to the public interest argument, and suggest a number of areas for discussion and clarification. (shrink)

A cardinal rule of academic research with human participants is to protect their confidentiality. While there are limits to confidentiality, universities and researchers will make strenuous efforts...