Going Boldly Where No One Has Gone Before? How Confidentiality Risk Aversion is Killing Research on Sensitive Topics

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.     

Mapping our Progress: Identifying, Categorizing and Comparing Universities’ Ethics Infrastructures

Ethics researchers have scrutinized ethical business problems, which have been demonstrated through the actions of managers at Enron, WorldCom, and Arthur Andersen, among others. In response to these business transgressions, the US government has implemented the Sarbanes–Oxley Act to shore up businesses’ ethics infrastructures. However, universities, too, struggle with ethics problems. These include NCAA (National Collegiate Athletic Association) violations, discrimination issues, sexual harassment, endowment admits, plagiarism, and research funding manipulation. Despite these problems, we have little knowledge regarding universities’ ethics infrastructures and codes of conduct, and insignificant empirical research on academic ethics issues (Kelley & Chang, Journal of Higher Education, under review, 2006; Morgan & Korschgen, College Student Journal, Sept., 2001). This lack of knowledge exists despite the critical role universities play in shaping the moral behavior of future generations (Langlais, The Chronicle of Higher Education, January 13:B11, 2006; Woo, BizEd, May/June:22–27, 2003). In this paper, we conduct exploratory research to identify the elements of universities ethics’ infrastructures. From our research, we develop an understanding of the ethics policies and infrastructure elements in place at a representative group of universities. We compare these infrastructures to those in business as well as across Carnegie Classifications. We then conclude with recommendations for developing university ethics infrastructures and suggestions for future research.     

Betrayal aversion: When agents of protection become agents of harm

A form of betrayal occurs when agents of protection cause the very harm that they are entrusted to guard against. Examples include the military leader who commits treason and the exploding automobile air bag. We conducted five studies that examined how people respond to criminal betrayals, safety product betrayals, and the risk of future betrayal by safety products. We found that people reacted more strongly (in terms of punishment assigned and negative emotions felt) to acts of betrayal than to identical bad acts that do not violate a duty or promise to protect. We also found that, when faced with a choice among pairs of safety devices (air bags, smoke alarms, and vaccines), most people preferred inferior options (in terms of risk exposure) to options that included a slim (0.01%) risk of betrayal. However, when the betrayal risk was replaced by an equivalent non-betrayal risk, the choice pattern was reversed. Apparently, people are willing to incur greater risks of the very harm they seek protection from to avoid the mere possibility of betrayal.     

Political Activism and Research Ethics

Those who care about and engage in politics frequently fall victim to cognitive bias. Concerns that such bias impacts scholarship recently have prompted debates – notably, in philosophy and psychology – on the proper relationship between research and politics. One proposal emerging from these debates is that researchers studying politics have a professional duty to avoid political activism because it risks biasing their work. While sympathetic to the motivations behind this proposal, I suggest several reasons to reject a blanket duty to avoid activism: (1) even if it reduced bias, this duty would make unreasonable demands on researchers; (2) this duty could hinder research by limiting viewpoint diversity; (3) this duty wrongly implies that academia offers a relative haven from bias compared to politics; and (4) not all forms of political activism pose an equal risk of bias. None of these points suggest that researchers should ignore the risk of bias. Rather, researchers should focus on stronger evidence-based strategies for reducing bias than a blanket recommendation to avoid politics.     

Issues presented by mandatory reporting requirements to researchers of child abuse and neglect

Mandatory reporting laws, which vary slightly from state to state, require reporting by helping professionals when there is reasonable cause to suspect child abuse. Institutional Review Boards (IRBs) require researchers to warn subjects of this duty to report, which may have a chilling effect on subject rapport and candor. Certificates of confidentiality, in conjunction with other precautions, may reduce some barriers to valid research. Attempts to resolve problems created by reporting laws must produce the most valid research, while minimizing harm and distress to research participants, their families, and the researcher and meeting local and federal legal requirements.     

Grey Matter: Ambiguities and Complexities of Ethics in Research

Ethical dilemmas are often not discussed in the dissemination of educational research. While the ethical guidelines for research seem clear at first glance, a closer look at the intimate nature of qualitative research reveals that there are many ambiguities or ‘grey’ areas where researchers must rely on their personal value systems. This article discusses the challenges faced by an experienced educator, although novice researcher, in considering the ethical parameters of her own research with adolescents with hearing loss. In particular, the grey ethical areas identified by the researcher include: (a) vulnerable population; (b) researcher role confusion; (c) consent; (d) privacy, confidentiality, and anonymity; as well as (e) the nature of risk. Based on the author’s own reflections on beginning the research process, the article presents possible pitfalls and ways of overcoming the possibility of becoming immobilized by the ethical enigmas of research.     

Has Emergency Medicine Research Benefited Patients? An Ethical Question

From an ethical standpoint, the goal of clinical research is to benefit patients. While individual investigations may not yield results that directly improve patients’ evaluation or treatment, the corpus of the research should lead in that direction. Without the goal of ultimate benefit to patients, such research fails as a moral enterprise. While this may seem obvious, the need to protect and benefit patients can get lost in the milieu of clinical research.Many advances in emergency medicine have been based upon the results of research studies conducted both within the specialty and by others outside of the field. But has this research benefited patients? Has it followed the Hippocratic commitment “to do good or at least do no harm”? The answer is: yes, and no. This paper attempts to demonstrate this: first by citing advances from applied research that have benefited emergency department patients over the past three decades, and follows with some aspects of emergency medicine research that makes one question both its safety and its efficacy. While enormous gains have been made in patient care as a result of emergency medical research, ethical considerations complicate this rosy picture, and point to future areas of concern for researchers.Some aspects of clinical research and research oversight fall short of meeting the ethical standards of safety and patient benefit. Research agendas are still driven largely by the availability of funds, both from private industry and from government agencies. Many vital patient groups are harmed by omitting or sorely under-representing them as research subjects, most notably those that are critically ill and injured. Finally, questions still arise about clinical researchers’ fiduciary responsibility to their subject-patients. Even more important than the institutional safeguards, such as the Institutional Review Boards, is the individual researcher’s moral compass, which must serve to protect the subject-patients of clinical research.Overall, emergency medicine research has been and continues to be a moral endeavor. Perhaps the greatest moral lapse has been the lack of attention to key populations within emergency medicine research, and the patients most needing acute intervention are the ones who suffer.     

Limits on risks for healthy volunteers in biomedical research

Healthy volunteers in biomedical research often face significant risks in studies that offer them no medical benefits. The U.S. federal research regulations and laws adopted by other countries place no limits on the risks that these participants face. In this essay, I argue that there should be some limits on the risks for biomedical research involving healthy volunteers. Limits on risk are necessary to protect human participants, institutions, and the scientific community from harm. With the exception of self-experimentation, limits on research risks faced by healthy volunteers constitute a type of soft, impure paternalism because participants usually do not fully understand the risks they are taking. I consider some approaches to limiting research risks and propose that healthy volunteers in biomedical research should not be exposed to greater than a 1% chance of serious harm, such as death, permanent disability, or severe illness or injury. While this guideline would restrict research risks, the limits would not be so low that they would prevent investigators from conducting valuable research. They would, however, set a clear upper boundary for investigators and signal to the scientific community and the public that there are limits on the risks that healthy participants may face in research. This standard provides guidance for decisions made by oversight bodies, but it is not an absolute rule. Investigators can enroll healthy volunteers in studies involving a greater than 1% chance of serious harm if they show that the research addresses a compelling public health or social problem and that the risk of serious harm is only slightly more than 1%. The committee reviewing the research should use outside experts to assess these risks.     

Institutional Review Boards: From Bane to Benefit

ABSTRACT— Institutional review boards (IRBs) are primarily prevention-focused, avoiding damage to human subjects and averting ethical infractions, thereby protecting participants, researchers, and universities. Yet, the cost of prevention focus is simply avoiding negative outcomes and is enacted through control, risk-aversion, security, detail-orientation, reactivity, anxiety, avoidance, punishment, negative possibilities, and seizing on a single dominant solution. These endanger the research enterprise. An alternative promotion focus is more advantageous as it seeks positive outcomes and thus facilitating research, which is the IRB's second duty. This alternative guides recruiting and training of staff, panel, and researchers; orienting to and reinforcing promotion norms; creating well-known, transparent, responsive, and efficient processes; and understanding the IRB's boundaries. Promotion balances prevention to make IRBs support research and protect subjects.     

A Question of Balance or Blind Faith?: Scientists’ and Science Policymakers’ Representations of the Benefits and Risks of Nanotechnologies

In recent years, in the UK and elsewhere, scientists and science policymakers have grappled with the question of how to reap the benefits of nanotechnologies while minimising the risks. Having recognised the importance of public support for future innovations, they have placed increasing emphasis on ‘engaging’ ‘the public’ during the early phase of technology development. Meaningful engagement suggests some common ground between experts and lay publics in relation to the definition of nanotechnologies and of their benefits and risks. However, views on nanotechnologies are likely to vary according to where actors stand in the technology production/consumption/assessment cycle. Drawing on data from a recent UK-based study, this article examines how scientists (‘upstream’ and ‘downstream’) and policymakers portray the benefits and risks of nanotechnologies, particularly as they relate to two major areas of predicted application, namely medicine/public health and environmental sustainability. The findings reveal that, in the main, scientists and science policymakers held a positive conception of nanotechnologies and see imminent applications, although they acknowledged particular risks, including adverse public reaction. While definitions of ‘benefit’ and ‘risk’ varied, most saw the benefits as outweighing the risks and believed that the risks could be adequately regulated once they were assessed. The difficulties of assessing risk, however, were acknowledged. The study raises a number of questions that will need to be addressed if regulations are to be developed that not only protect people’s heath and wellbeing and the environment but also engender public trust in nanotechnologies.

Study strategies of college students: Are self-testing and scheduling related to achievement?

Previous studies, such as those by Kornell and Bjork (Psychonomic Bulletin & Review, 14:219–224, 2007) and Karpicke, Butler, and Roediger (Memory, 17:471–479, 2009), have surveyed college students’ use of various study strategies, including self-testing and rereading. These studies have documented that some students do use self-testing (but largely for monitoring memory) and rereading, but the researchers did not assess whether individual differences in strategy use were related to student achievement. Thus, we surveyed 324 undergraduates about their study habits as well as their college grade point average (GPA). Importantly, the survey included questions about self-testing, scheduling one’s study, and a checklist of strategies commonly used by students or recommended by cognitive research. Use of self-testing and rereading were both positively associated with GPA. Scheduling of study time was also an important factor: Low performers were more likely to engage in late-night studying than were high performers; massing (vs. spacing) of study was associated with the use of fewer study strategies overall; and all students—but especially low performers—were driven by impending deadlines. Thus, self-testing, rereading, and scheduling of study play important roles in real-world student achievement.     

Ethical issues in field research: balancing competing values.

An ethical issue becomes a dilemma when the psychologist is pulled in different directions by competing values. This paper will focus on the conflict between experimental and ethical values inherent in field research. The problem has special significance in community psychology, which gives priority to studying, in natural settings, those affected by social problems. An example is given of research that required observation of family interaction in the homes of convicted child abusers. The case demonstrates that the value of ecological validity often conflicts with the need to protect privacy and obtain uncoerced consent. Other ethical constraints, including the duty to report lawbreaking and to protect the public from harm, may threaten research validity.     

Reliability Beyond Theory and Into Practice

The critical reactions of Bentler (2009, doi:), Green and Yang (2009a, doi:; 2009b, doi:), and Revelle and Zinbarg (2009, doi:) to Sijtsma’s (2009, doi:) paper on Cronbach’s alpha are addressed. The dissemination of psychometric knowledge among substantive researchers is discussed.     

Ethical issues in research on adolescent depression and suicidal behaviour

The codes of ethical conduct of the Australian Psychological Society and the American Psychological Association imply that researchers of adolescent depression and suicidal behaviour must plan to intervene to assess risk where a participant in a study indicates an intention to commit suicide. Participants in research of this kind need to be advised of this possibility in advance. The obligation to intervene, and to advise of the possibility of intervention, pose practical and methodological problems for research in this area but do not, it is argued, absolve the researcher of the primary responsibility to contribute to the welfare of the research participant.     

Parents’ Grief in the Context of Adult Child Mental Illness: A Qualitative Review

Research indicates that parents and other family members often grieve their child or relative’s mental illness. This grief appears resultant from a profound sense of loss, which has been described as complicated and nonfinite (e.g., Atkinson in Am J Psychiatry 151(8):1137–1139, 1994; Davis and Schultz in Soc Sci Med 46(3):369–379, 1998; Jones in Br J Soc Work 34:961–979, 2004; MacGregor in Soc Work 39(2):160–166, 1994; Osborne and Coyle in Couns Psychol Q 15(4):307–323, 2002; Ozgul in Aust N Z J Fam Ther 25(4):183–187, 2004; Tuck et al. in Arch Psychiatric Nurs 11(3):118–125, 1997). This paper reviews existent research in this emerging field, with a focus on parents’ grief experience in relation to their adult child’s mental disorder. Studies that explore parents’ and family members’ grief, using both qualitative and quantitative methodologies, are considered. Research evidence for the association between parents’ and family members’ grief and other outcomes are discussed. Findings concerning the prediction of grief in parents and family members who have a child or relative with a mental disorder will be reviewed. Finally, this paper considers methodological and theoretical issues associated with existent research and presents options for further study.     

A survey on adverse incidents in legal psychology studies: Reflections on ethics review

Ethics committees (ECs) regulate research activities to maintain research participants' autonomy and to protect them from harm and injury. No research to date attempted to establish how much risk is involved in social‐science research. Using a survey approach, we set out to estimate the risk of being involved in an incident for research participants in legal psychology and assessed researchers' views of ECs. Fifty‐nine of 188 respondents (31%) stated that they had experienced one or more incidents with a participant. The estimated risk of being involved in an incident was one to three per 10,000 participants, which according to biomedical standards defines a rare risk. Although some researchers were satisfied with their EC, the general tenor was one of discontent due to conservative decision‐making, lacking expertise, and overstepping demands. Whether ECs succeed in protecting participants from loss of autonomy, harm and injury are unknown but are open to empirical research.     

“Just Carbon”: Ideas About Graphene Risks by Graphene Researchers and Innovation Advisors

Graphene is a nanomaterial with many promising and innovative applications, yet early studies indicate that graphene may pose risks to humans and the environment. According to ideas of responsible research and innovation, all relevant actors should strive to reduce risks related to technological innovations. Through semi-structured interviews, we investigated the idea of graphene as a risk (or not) held by two types of key actors: graphene researchers and innovation advisors at universities, where the latter are facilitating the movement of graphene from the laboratory to the marketplace. The most common idea found is that graphene is not a risk due to, e.g., low toxicity, low amounts produced/used, and its similarity to harmless materials (being “just carbon”). However, some researchers and advisors also say that graphene is a risk, e.g., under certain conditions or due to a lack of risk-related information. We explain the co-existence of these seemingly contradictory ideas through (1) the semantic ambiguity of the word risk and (2) a risk/no-risk rhetoric, where risks are mentioned rhetorically only to be disregarded as manageable or negligible. We suggest that some of the ideas held by the researchers and innovation advisors constitute a challenge to responsible research and innovation regarding graphene. At the same time, we acknowledge the dilemma that the discourse of responsible innovation creates for the actors: denying graphene risks makes them irresponsible due to a lack of risk awareness, while affirming graphene risks makes them irresponsible due to their everyday engagement in graphene development. We therefore recommend more research into what researchers and innovation advisors should do in practice in order to qualify as responsible.     

The experience of watching dance: phenomenological–neuroscience duets

This paper discusses possible correspondences between neuroscientific findings and phenomenologically informed methodologies in the investigation of kinesthetic empathy in watching dance. Interest in phenomenology has recently increased in cognitive science (Gallagher and Zahavi 2008) and dance scholars have recently contributed important new insights into the use of phenomenology in dance studies (e.g. Legrand and Ravn (Phenomenology and the Cognitive Sciences 8(3):389–408, 2009); Parviainen (Dance Research Journal 34(1):11–26, 2002); Rothfield (Topoi 24:43–53, 2005)). In vision research, coherent neural mechanisms for perceptual phenomena were uncovered, thus supporting correlation of phenomenology and neurophysiology Spillmann (Vision Research 49(12):1507–1521, 2009). Correspondingly, correlating subjects’ neurophysiological data with qualitative responses has been proposed as a means to research the human brain in the study of consciousness (Gallagher and Zahavi 2008), with similar issues in clinical psychology Mishara (Current Opinion in Psychiatry 20(6):559–569, 2007) and biology Kosslyn et al. (American Psychologist 57:341–351, 2002). Yet the relationship between neuroscience and qualitative research informed by phenomenology remains problematic. How qualitative research normally handles subjective experiences is difficult to reconcile with standard statistical analysis of objective data. Recent technological developments in cognitive neuroscience have inspired a number of researchers to use more naturalistic stimuli, outside the laboratory environment, such as dance, thereby perhaps helping to open up the cognitive sciences to more phenomenologically informed approaches. A question central to our research, addressed here, is how the phenomenal experiences of a dance audience member, as accessed by qualitative research methods, can be related to underlying neurophysiological events. We outline below some methodological challenges encountered in relating audiences’ first-person accounts of watching live dance performance to neurophysiological evidence of their experiences.     

Complicity and Criminal Liability in Rwanda: A Situationist Critique

In Complicity and the Rwandan Genocide (2010b), Larry May argues that complicity can be the basis for criminal liability if two conditions are met: First, the person’s actions or inactions must contribute to the harm in question, and secondly, the person must know that his actions or inactions risk contributing to this harm. May also states that the threshold for guilt for criminal liability is higher than for moral responsibility. I agree with this latter claim, but I think that it casts doubt on May’s account of criminal liability, particular in so-called performance cases in which low-level participants merely fail to help. This is because it is far from clear that passive non-helpers are morally responsible for their participation in widespread harms. Situationism purports to show that passive bystanders typically are not morally responsible for their role in such harms, because they were behaving reasonably subject to the constraints they faced. In this paper, I assess this claim, and defend it on the basis of O. W. Holmes’ standard of the reasonable person as a guide to judging criminal complicity. Finally, I provide a situationist account of the Rwandan genocide, which focuses on the systemic causes and primary perpetrators of the genocide, rather than low-level participants.     

Three Approaches to the Disjunction Between Psychological Measurement and Psychological Persons: Methodological and Ethical Considerations

In this paper, we take forward Schwarz’s (2009) disjunction between measurement-apparatus-questionnaire and measurement-apparatus-man to examine how the crisis in contemporary psychology is related to assumptions about two sets of connections in research: connections between research tools, research behaviours, and psychological phenomena; and connections between researchers and researchees. By setting up a research problem with methodological and ethical implications, we describe three approaches that involve different assumptions and research activities in relation to the ways each makes these connections: Disassociated, Conventionally Connected and Persons in Dialogue Approaches. We argue that a Persons in Dialogue Approach is the most appropriate approach for a 21st Century psychology in crisis.