You will find the most recent publications by researchers active at CRB with abstracts and links to journals below. Our staff pages also contains publication lists.
Evers K & Sigman M, Consciousness and Cognition, 2014;22:887–897
Abstract: Access to other minds once presupposed other individuals' expressions and narrations. Today, several methods have been developed which can measure brain states relevant for assessments of mental states without 1st person overt external behavior or speech. Functional magnetic resonance imaging and trace conditioning are used clinically to identify patterns of activity in the brain that suggest the presence of consciousness in people suffering from severe consciousness disorders and methods to communicate cerebrally with patients who are motorically unable to communicate. The techniques are also used non-clinically to access subjective awareness in adults and infants. In this article we inspect technical and theoretical limits on brain–machine interface access to other minds. We argue that these techniques hold promises of important medical breakthroughs, open up new vistas of communication, and of understanding the infant mind. Yet they also give rise to ethical concerns, notably misuse as a consequence of hypes and misinterpretations.
Farisco M, AJOB Neuroscience 2014, 5(2):20-52
Abstract: A recent Italian case shows that the interpretation of neuroscientific evidence is often uncertain and debated. Judges and courts have to deal with this uncertainty. We suggest as a strategy to assess it the involvement of meta-scientific experts who can help lay people (as judges and juries presumably are, in science) to understand the formal and conceptual limitation of neuroscience.
Abstract: Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing.
Distortion, confusion, and impasses: could a public dialogue within Knowledge Landscapes contribute to better communication and understanding of innovative knowledge?
Svalastog AL, Allgaier J, Martinelli L, Gajovic S:, Croat Med J. 2014;55:54-60, doi: 10.3325/cmj.2014.55.54
Summary: Researchers and scientists need to communicate new knowledge to society. Previously, the discussion on this communication process has focused on dialoge between scientists on the one hand, and policy makers and the public on the other. The authors suggest that today, researchers, PR consultants, interest groups, policy makers and lay people interact on the Internet, creating "knowledge landscapes" where knowledge is interrelated, framed and shaped. The focus of this article is on "bio objects" (such as stem cells and chimeras) and science communicaiton in relation to citizenship and personalized medicine.
Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials
Abstract: It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients showadequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.
Enhancing Research Ethics Capacity in the Middle East: Experience and Challenges of a Fogarty-Sponsored Training,
Siverman H, Edwards H, Shamoo A & Matar A, Journal of Empirical Research on Human Research Ethics: An International Journal, 2013;8(5):40-51
Abstract: We describe the research ethics capacity needs of the countries from the Middle East region. Against this background, we relate the experience of an international training program focused on providing long-term training in research ethics to individuals from low- and middle-income countries in the Middle East area. We describe our pedagogical approach to training, program changes to address challenges faced, and accomplishments of trainees. Many former trainees developed research ethics curricula in their home institutions, established or enhanced their institutions' research ethics committees, provided leadership to national research ethics systems, and conducted research in research ethics. Based on our analysis, we make recommendations for how trainees can further address current regional research ethics needs in the Middle East and conduct future research. This paper is part of a collection of papers analyzing the Fogarty International Center's International Research Ethics Education and Curriculum Development program.
Stjernschantz Forsberg J, Soini S, Nature Reviews Genetics, doi:10.1038/nrg3646. Published online 10 December 2013
Abstract: Human tissue samples and their associated data have become increasingly important in biomedical research. This development has led to a debate about the appropriate ethical and legal standards for their use, which has focused largely on the issue of informed consent. The traditional consent requirements of clinical research demand that individuals are informed about the specific details of every study, which presents substantial challenges for biobank research. A key question has therefore been how to weigh the interests of the individuals whose samples are used against the interests of research.