As concern over the use of questionable research practices in academic science has increased over the last couple of decades, some reforms have been implemented and many others have been debated and recommended. While many of these proposals have merit, efforts to improve scientific practices are more likely to succeed when they are responsive to the prevailing views and concerns of scientists themselves. To date, there have been few efforts to solicit wide-ranging input from researchers on the topic of needed (...) reforms. This article is a qualitative report of responses from federally funded scientists to the question of what should be done to address the problem of QRPs in their disciplines. Overall, participants were concerned about how institutional and career-oriented incentives encourage the use of QRPs. Compared to previous recommendations, participants had surprisingly little confidence in the ability of ethics training to improve research integrity. (shrink)

The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...) and biobanks that go beyond the initial moment of obtaining consent, such as closer involvement of tissue providers in what happens to their tissue, and more active participatory approaches to the governance of biobanks. However, in spite of these calls, such measures are being adopted slowly in practice, and there remains a strong tendency to focus on the consent procedure as the tool for addressing the ethical challenges of contemporary biobanking. In this paper, we argue that one of the barriers to this transition is the dominant language pervading the field of human tissue research, in which the provision of tissue is phrased as a ‘donation’ or ‘gift’, and tissue providers are referred to as ‘donors’. Because of the performative qualities of language, the effect of using ‘donation’ and ‘donor’ shapes a professional culture in which biobank participants are perceived as passive providers of tissue free from further considerations or entitlements. This hampers the kind of participatory approaches to governance that are deemed necessary to adequately address the ethical challenges currently faced in human tissue research. Rather than reinforcing this idea through language, we need to pave the way for the kind of participatory approaches to governance that are being extensively argued for by starting with the appropriate terminology. (shrink)

Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported (...) a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs. (shrink)

The development of novel neurotechnologies, such as brain-computer interface (BCI) and deep-brain stimulation (DBS), are very promising in improving the welfare and life prospects many people. These include life-changing therapies for medical conditions and enhancements of cognitive, emotional, and moral capacities. Yet there are also numerous moral risks and uncertainties involved in developing novel neurotechnologies. For this reason, the progress of novel neurotechnology research requires that diverse publics place trust in researchers to develop neural interfaces in ways that are overall (...) beneficial to society and responsive to ethical values and concerns. In this article, we argue that researchers and research institutions have a moral responsibility to foster and demonstrate trustworthiness with respect to broader publics whose lives will be affected by their research. Using Annette Baier’s conceptual analysis of trust, which takes competence and good will to be its central components, we propose that practices of ethical reflexivity could play a valuable role in fostering the trustworthiness of individual researchers and research institutions through building and exhibiting their moral competence and good will. By ethical reflexivity, we mean the reflective and discursive activity of articulating, analyzing, and assessing the assumptions and values that might be underlying their ethical actions and projects. Here, we share an ethics dialog tool—called the Scientific Perspectives and Ethics Commitments Survey (or SPECS)—developed by the University of Washington’s Center of Neurotechnology (CNT) Neuroethics Thrust. Ultimately, the aim is to show the promise of ethical reflexivity practices, like SPECS, as a method of enhancing trustworthiness in researchers and their institutions that seek to develop novel neurotechnologies for the overall benefit of society. (shrink)

There is a growing body of literature that has sought to undermine systems of ethical regulation, and governance more generally, within the social sciences. In this paper, we argue that any general claim for a system of research ethics governance in social research depends on clarifying the nature of the stake that society has in research. We show that certain accounts of this stake—protecting researchers’ freedoms; ensuring accountability for resources; safeguarding welfare; and supporting democracy—raise relevant ethical considerations that are reasonably (...) contested. However, these accounts cannot underpin a general claim in favour of, or against, a system of research ethics governance. Instead, we defend governance in social research on the grounds that research, as an institutionalised form of enquiry, is a constitutive element of human flourishing, and that society ought to be concerned with the flourishing of its members. We conclude by considering the governance arrangements that follow from, and are justified by, our arguments. (shrink)

This article provides an analysis of the issues and ethical challenges faced in a study with LGBTIQ student participants concerning their experiences of violence, harassment and bullying in tertiary settings. The authors detail the ethical challenges behind the development of the project, and around conducting research with a minority and vulnerable population. The article illustrates how the utilization of feminist and queer theory has impacted the process of conducting ethical research, including approaches to recruitment and participant autonomy. The dilemmas of (...) confidentiality within a self-labelled and easily identifiable population are resolved. Further, unexpected challenges and risks to participant safety created through adherence to institutional ethical research frameworks are rectified. Importantly, the authors seek to avoid revictimization of participants and to instead empower students in their responses to violence, harassment and bullying that they may have experienced. The authors point to utilization of theoretical foundations and continual reflexive improvement as elements of best practice for those seeking to research minority populations, and in projects marked by the participation of those deemed vulnerable and high-risk. (shrink)

The realities of human agency and decision making pose serious challenges for research ethics. This article explores six major challenges that require more attention in the ethics education of students and scientists and in the research on ethical conduct in science. The first of them is the routinization of action, which makes the detection of ethical issues difficult. The social governance of action creates ethical problems related to power. The heuristic nature of human decision making implies the risk of ethical (...) bias. The moral disengagement mechanisms represent a human tendency to evade personal responsibility. The greatest challenge of all might be the situational variation in people’s ethical behaviour. Even minor situational factors have a surprisingly strong influence on our actions. Furthermore, finally, the nature of ethics itself also causes problems: instead of clear answers, we receive a multitude of theories and intuitions that may sometimes be contradictory. All these features of action and ethics represent significant risks for ethical conduct in science. I claim that they have to be managed within the everyday practices of science and addressed explicitly in research ethics education. I analyse them and suggest some ways in which their risks can be alleviated. (shrink)

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. (shrink)

Research related to indigenous peoples in Sweden and elsewhere has a history marked by discriminatory practice and unequal research processes. Sweden has still not been very visible in terms of openly debating, developing and implementing ethical strategies specifically suited for indigenous research. The present study explores how research ethics is discussed among scholars within the Sami research field in contemporary Sweden. Fifty-six research proposals deriving from eight different research institutions and 160 individual researchers are analyzed, discovering how scholars relate to (...) research ethics when planning for new research projects related to the indigenous Sami. The results demonstrate that ethical guidelines for research are often referred to, but that a common view on what guidelines to use is lacking, leading to a notable variety between different researchers. Ethical discussions are present in the vast majority of the proposals, however there are notable differences between the theories around how to proceed in a culturally safe, ethical manner, and the proposed methods that are to be used to implement theory in practice. In conclusion, there exists a great uncertainty among scholars on where to seek ethical guidance, how to relate to current legislation around research ethics and at the same time act ethically in a culturally appropriate manner. This uncertainty leads to questioning whether discussions of ethics are relevant in the first place, what they are supposed to include, how they are meant to be undertaken and what consequences can be expected from the presence or absence of ethics in indigenous research. (shrink)