While there is consensus on the essential importance of public engagement in further developments of biobanking, the related investigation of public views predominantly focused on the concerns expressed by the publics, and the concrete format of public engagement, without delving into the ways these concerns are constituted. In this paper, we synthetize recent research on public engagement in order to describe the constitution of respective concerns as 'engagement of knowledges'. By shifting from 'publics' to 'knowledges', we draw attention to the interaction dynamic through which citizens embed the new knowledge they receive during expert interactions into the stock of knowledge they already possess. Analyzing our recent investigation of public views on biobanking in the form of citizen-expert panels (CEPs) in the Austrian infrastructure of biobanks (BBMRI.at), we trace this dynamic through citizens' recurrent concerns that the research and consent practices related to biobanking should be "appropriate".
Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.
Artificial intelligence (AI) is being applied in medicine to improve healthcare and advance health equity. The application of AI-based technologies in radiology is expected to improve diagnostic performance by increasing accuracy and simplifying personalized decision-making. While this technology has the potential to improve health services, many ethical and societal implications need to be carefully considered to avoid harmful consequences for individuals and groups, especially for the most vulnerable populations. Therefore, several questions are raised, including (1) what types of ethical issues are raised by the use of AI in medicine and biomedical research, and (2) how are these issues being tackled in radiology, especially in the case of breast cancer? To answer these questions, a systematic review of the academic literature was conducted. Searches were performed in five electronic databases to identify peer-reviewed articles published since 2017 on the topic of the ethics of AI in radiology. The review results show that the discourse has mainly addressed expectations and challenges associated with medical AI, and in particular bias and black box issues, and that various guiding principles have been suggested to ensure ethical AI. We found that several ethical and societal implications of AI use remain underexplored, and more attention needs to be paid to addressing potential discriminatory effects and injustices. We conclude with a critical reflection on these issues and the identified gaps in the discourse from a philosophical and STS perspective, underlining the need to integrate a social science perspective in AI developments in radiology in the future.
Biobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks could potentially face. Methodologically set as a typology, the conceptual approach used in this paper is based on the interdisciplinary analysis of scientific literature, the relevant ethical and legal instruments and practices in biobanking to identify how risks are assessed, considered and mitigated. Through an interdisciplinary mapping exercise, we have produced a typology of potential risks in biobanking, taking into consideration the perspectives of different stakeholders, such as institutional actors and publics, including participants and representative organizations. With this approach, we have identified the following risk types: economic, infrastructural, institutional, research community risks and participant’s risks. The paper concludes by highlighting the necessity of an adaptive risk governance as an integral part of good governance in biobanking. In this regard, it contributes to sustainability in biobanking by assisting in the design of relevant risk management practices, where they are not already in place or require an update. The typology is intended to be useful from the early stages of establishing such a complex and multileveled biomedical infrastructure as well as to provide a catalogue of risks for improving the risk management practices already in place.
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