The reconfiguration of biobanks in Europe under the BBMRI-ERIC framework: towards global sharing nodes?
AbstractFreezers with biospecimen deposits became biobanks and later were networked at the pan-European level in 2013 under the Biobanking and BioMolecular Resources Research Infrastructure —European Research Infrastructure Consortium (BBMRI-ERIC). Drawing on document analysis about the BBMRI-ERIC and multi-sited fieldwork with biobankers in Spain from a science and technology studies approach, we explore what biobanks are expected to do and become under the BBMRI-ERIC framework, and how infrastructural transitions promote particular transformations in biobanking practices. The primary purpose of biobanks in Europe is pr...
Source: Life Sciences, Society and Policy - September 30, 2020 Category: Medical Ethics Source Type: research
What is the impact of patient recruitment on offshoring of clinical trials?
AbstractThe issue of globalization of research is receiving considerable attention due to the increasing number of offshored R&D activities from the United States, Europe, and Japan. This paper explores this phenomenon and provides a model to analyze the factors that will likely contribute to a global transformation of clinical trials. By identifying the main characteristics of clinical trials, I aim to clarify the main driver of the relocation process of clinical research. I reviewed the relevant published articles to address the research questions. The results of this study challenge the traditional thinking of cost-...
Source: Life Sciences, Society and Policy - September 20, 2020 Category: Medical Ethics Source Type: research
Consolidating RRI and Open Science: understanding the potential for transformative change
AbstractIn European research and innovation policy, Responsible Research and Innovation (RRI) and Open Science (OS) encompass two co-existing sets of ambitions concerning systemic change in the practice of research and innovation. This paper is an exploratory attempt to uncover synergies and differences between RRI and OS, by interrogating what motivates their respective transformative agendas. We offer two storylines that account for the specific contexts and dynamics from which RRI and OS have emerged, which in turn offer entrance points to further unpacking what ‘opening up’ to society means with respect to the tran...
Source: Life Sciences, Society and Policy - August 31, 2020 Category: Medical Ethics Source Type: research
Just data? Solidarity and justice in data-driven medicine
AbstractThis paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between thegood and theright, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of thegood. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could —especially considering current developments in big data and artificial intelligence—compromise theright by leading to injustices and affecting concrete modes of individual self-determination. In ...
Source: Life Sciences, Society and Policy - August 24, 2020 Category: Medical Ethics Source Type: research
How should researchers cope with the ethical demands of discovering research misconduct? Going beyond reporting and whistleblowing
AbstractIn this paper, I will argue that making it mandatory to report research misconduct is too demanding, as this kind of intervention can at times be self-destructive for the researcher reporting the misconduct. I will also argue that posing the question as a binary dilemma masks important ethical aspects of such situations. In situations that are too demanding for individual researchers to rectify through reporting, there can be other forms of social control available. I will argue that researchers should explore these. Finally, framing the issue as a question about the responsibilities of individual researchers masks...
Source: Life Sciences, Society and Policy - August 5, 2020 Category: Medical Ethics Source Type: research
Health is a political choice: why conduct healthcare research? Value, importance and outcomes to policy makers
AbstractThis paper offers the Eastern Mediterranean Region (EMR) viewpoint with Qatar as a case for lasting transformation of health systems. The Qatar case study illustrates the importance of research in the development of health policy. It provides description of a series of projects that have been undertaken in relevant national areas such as autism, dementia, genomics, palliative care and patient safety. The paper discourse draws attention to investment requirement in health research systems to respond to country national health priorities and to strengthen public health policies for improving health and social outcome...
Source: Life Sciences, Society and Policy - July 26, 2020 Category: Medical Ethics Source Type: research
Allonymous science: the politics of placing and shifting credit in public-private nutrition research
AbstractIdeally, guidelines reflect an accepted position with respect to matters of concern, ranging from clinical practices to researcher behaviour. Upon close reading, authorship guidelines reserve authorship attribution to individuals fully or almost fully embedded in particular studies, including design or execution as well as significant involvement in the writing process. These requirements prescribe an organisation of scientific work in which this embedding is specifically enabled. Drawing from interviews with nutrition scientists at universities and in the food industry, we demonstrate that the organisation of rese...
Source: Life Sciences, Society and Policy - June 21, 2020 Category: Medical Ethics Source Type: research
Sociological factors influencing the performance of organic activities in Iran
AbstractThe conventional production model based on extensive use of chemical inputs such as pesticides is increasingly challenged. Organic agriculture is considered as one of the most important alternative agricultural systems to produce healthy food without any chemicals. Current models are not suitable for prediction of environmental behaviors. The current study aims to analyze the diffusion of organic agriculture to produce healthy food with the environmental sociology approach among farmers. The study was conducted using the survey research and multi-stage random sampling in Fars province, in the south of Iran. The sam...
Source: Life Sciences, Society and Policy - May 10, 2020 Category: Medical Ethics Source Type: research
A socio-psychological model of laser levelling impacts assessment
This study aimed at assessing the impacts of laser levelling economically, socially, environmentally, and technically in the viewpoint of the agricultural experts and identifying factors determining their perception of the impacts. The study samples (151 experts) were selected using multi-stage random sampling in Fars Province, Iran. The results revealed that experts considered uniform distribution of water, using conservation tillage, facilitating agricultural activities, decreased water consumption and decrease of water wasting as the most important technical impacts of laser levelling technology. The most environmentall...
Source: Life Sciences, Society and Policy - February 16, 2020 Category: Medical Ethics Source Type: research
Broad consent under the GDPR: an optimistic perspective on a bright future
This article takes an in-depth look at the situation concerning broad consent under the GDPR and – despite the understandable concern flowing from recent jurisprudence – offers a positive outlook. This positive outlook is argued from three perspectives, each of which is significant in definin g the current, and ongoing, legitimacy and utility of broad consent under the GDPR: the principled, the legal technical, and the practical. (Source: Life Sciences, Society and Policy)
Source: Life Sciences, Society and Policy - January 5, 2020 Category: Medical Ethics Source Type: research
Souled out of rights? – predicaments in protecting the human spirit in the age of neuromarketing
This article is a survey analysis of the future of the digital age, reflecting primarily on the effects of neurotechnology that violate universal human rights to dignity, self-determination, and privacy. In particular, this article focuses on neuromarketing to critically assess potentially negative social ramifications of under-regulated neurotechnological application. Possible solutions are critically evaluated, including the human rights claim to the ‘right to mental privacy’ and the suggestion of a new human right based on spiritual jurisdiction, where the human psyche is a legal space in a substantive legal setting...
Source: Life Sciences, Society and Policy - November 21, 2019 Category: Medical Ethics Source Type: research
Addressing research integrity challenges: from penalising individual perpetrators to fostering research ecosystem quality care
AbstractConcern for and interest in research integrity has increased significantly during recent decades, both in academic and in policy discourse. Both in terms of diagnostics and in terms of therapy, the tendency in integrity discourse has been to focus on strategies of individualisation (detecting and punishing individual deviance). Other contributions to the integrity debate, however, focus more explicitly on environmental factors, e.g. on the quality and resilience of research ecosystems, on institutional rather than individual responsibilities, and on the quality of the research culture. One example of this is theBon...
Source: Life Sciences, Society and Policy - June 9, 2019 Category: Medical Ethics Source Type: research
Questioning the rhetoric of a ‘willing population’ in Finnish biobanking
AbstractAccording to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as ‘willing population’ and ‘engaged people’ in the promotion and ...
Source: Life Sciences, Society and Policy - May 26, 2019 Category: Medical Ethics Source Type: research
Understanding social oocyte freezing in Italy: a scoping survey on university female students ’ awareness and attitudes
AbstractIn Western countries, a social trend toward delaying childbearing has been observed in women of reproductive age for the last two decades. This delay is due to different factors related to lifestyle, such as the development of a professional career or the absence of the right partner. As a consequence, women who defer childbearing may find themselves affected by age-related infertility when they decide to conceive. Fertility preservation techniques are, therefore, proposed as a solution for these women. Among all possible solutions, social freezing is an alternative strongly discussed from a scientific, social and ...
Source: Life Sciences, Society and Policy - May 2, 2019 Category: Medical Ethics Source Type: research
Digital epidemiology and global health security; an interdisciplinary conversation
AbstractContemporary infectious disease surveillance systems aim to employ the speed and scope of big data in an attempt to provide global health security. Both shifts - the perception of health problems through the framework of global health security and the corresponding technological approaches – imply epistemological changes, methodological ambivalences as well as manifold societal effects. Bringing current findings from social sciences and public health praxis into a dialogue, this conversation style contribution points out several broader implications of changing disease surveillance. The conversation covers epidem...
Source: Life Sciences, Society and Policy - March 18, 2019 Category: Medical Ethics Source Type: research
