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During the set-up phase of an international study of genetic influences on outcomes from sepsis, we aimed to characterise potential differences in ethics approval processes and outcomes in participating Europe...
Biobanking is a relatively new concept in Egypt. ... stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is ... attitude, and opinions of Egyptian patients towa...
As biobank research has become increasingly widespread within biomedical ... enrolment in what ways samples deposited in a biobank may be used in future research and...informed, exactly this kind of knowledge is ...
In the last years, there has been an increase in publication of systematic reviews of normative (“argument-based”) literature or of normative information (such as ethical issues) in bioethics. The aim of a sys...
Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific di...
Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grou...
Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the mo...
Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of pri...
Views on the informed consent model used in Malawi, some stakeholders expressed that the current model limited options for sample contributors regarding future use. Researchers supported storing samples for futur...
Large-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncover...
Public awareness and engagement are among the main prerequisites for protecting the rights of research participants and for successful and sustainable functioning of research biobanks. The aim of our study was to...
Biobanks provide an important foundation for genomic and ... donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.
Health data holds great potential for improved treatments. Big data research and machine learning models have been shown to hold great promise for improved diagnostics and treatment planning. The potential is ...
Electronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirabl...
Our human societies and certainly also (bio) medicine are more and more permeated with technology. There seems to be an increasing awareness among bioethicists that an effective and comprehensive approach to e...
A biobank is a structure which collects and manages ... been answered through specific rules. Thus, a Biobank functioning under tight ethical rules would be ... In 2009, Côte d’Ivoire established a biobank, which...
Consent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and t...
Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust ...
In the context of translational research, researchers have increasingly been using biological samples and data in fundamental research phases. To explore informed consent practices, we conducted a retrospectiv...
Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the stu...
Biobanking provides exciting opportunities for research on stored ... African stakeholders on the ethico-legal dimensions of biobanking.
Informed consent forms for clinical research are several and variable at international, national and local levels. According to the literature, they are often unclear and poorly understood by participants. Wit...
Despite the rapid global growth of biobanking over the last few decades, and their ... to the sharing of benefits that accrue from biobanks have received little attention. Questions such as ... and range of benef...
Precision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies...
In the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort, participants underwent magnetic resonance imaging (MRI) of the brain, heart, and abdomen, that generated incidental findings (IFs). The app...
Biobanks are considered primary means+ of supporting contemporary...
These findings highlight the potential of genetic education and active engagement with genetic testing to increase support and participation in genomic projects, PM, and biobanking initiatives; and they suggest t...
The success of biobanking is directly linked to the willingness of ... consent are an essential component of the current biobanking agenda. The majority of data available are focused on population-based biobanks ...
Limited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts ... in a multi-disease community health screening and biobank platform study kn...
The aim of the present survey was to investigate newly discharged hospital patients’ opinions on secondary use of their hospital data and biospecimens within the context of health research in general and, more...
Biobanks have recently been established in several low- ... . We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks.
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 biolo...
The Act Regarding the Promotion of the Appropriate Supply of Hematopoietic Stem Cells for Transplant regulates only how public banks store and provide umbilical cord blood (UCB) for research or transplantation. J...
Biobanks and biomedical research data repositories collect their ... terms of contributing to the public good. Biobank resources may be accessible to researchers with ... private interactions associated with larg...
Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislatio...
The research shows a growing trend in using an electronic platform to supplement or replace traditional paper-based informed consent processes. Instead of the traditionally written informed consent document, e...
Population-based genomics studies have proven successful in identifying genetic variants associated with diseases. High-quality biospecimens linked with informative health data from diverse segments of the popula...
Empirical research can become relevant for bioethics in at least two ways. First, by informing the development or refinement of ethical recommendations. Second, by evaluating how ethical recommendations are tr...
Biobanks are a key aspect of healthcare research; ... and/or curation of such resources. However, biobanks are also associated with impacts associated with ... biodiversity. We wanted to better understand the biobanking
Biobanking biospecimens and consent are common practice in ... perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can...
It is widely acknowledged that trust plays an important role for the acceptability of data sharing practices in research and healthcare, and for the adoption of new health technologies such as AI. Yet there is...
The Correction to this article has been published in BMC Medical Ethics 2023 24:77
Over the last few decades biobanks have been recognised as institutions that may ... still lacks clear regulations regarding the running of biobanks and the conducting of biomedical research. While the awareness ...
With the outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), global researchers were confronted with major challenges. The German National Pandemic Cohort Network (NAPKON) was launched in...
The health sector aims to improve health outcomes and access to healthcare. At the same time, the sector relies on unsustainable environmental practices that are increasingly recognised to be catastrophic thre...
Conventional consent practices face ethical challenges in continuously evolving digital health environments due to their static, one-time nature. Dynamic consent offers a promising solution, providing adaptabi...
Biobanking and genomic research requires collection and storage ... ethical considerations in the establishment and conduct of biobanking and genomic studies in Africa.
Informed consent as stipulated in regulatory human research guidelines requires volunteers to be well-informed about what will happen to them in a trial. However, researchers may be faced with the challenge of...
Certain organoid subtypes are particularly sensitive. We explore whether moral intuitions about the heartbeat warrant unique moral consideration for newly advanced contracting cardiac organoids. Despite the he...
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