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Human Control of Life
Published in Robert M. Veatch, Laura K. Guidry-Grimes, The Basics of Bioethics, 2019
Robert M. Veatch, Laura K. Guidry-Grimes
Numerous research protocols include the request for collecting genetic materials for biobanks, which are storage places for biological specimens intended for future research. There are hundreds of millions of genetic samples in biobanks throughout the world. Research participants will not be able to access, remove, or learn about their genetic sample once they have contributed to a biobank because of how the materials are deidentified (that is, the samples are not linked to the donating individual with identifying information). This means that participants can have no knowledge of how or when their samples contributed to any scientific endeavors and cannot learn if, at some point in the future, medical information is learned from the sample that could be clinically useful to the donor or the donor’s relatives.
Biobanking in sport: governance and ethics
Published in Silvia Camporesi, Mike McNamee, Bioethics, Genetics and Sport, 2018
Silvia Camporesi, Mike McNamee
The dominant norm for consent is written consent, where suitable surrogates are permissible for those without competence (Manson et al. 2007). First-person, written, informed consent has been seen as the ‘gold standard’ of clinical research. For research biobanks, however, which bring together existing data repositories, it is difficult or impossible to gain specific consent, as intended uses of the data were unknown at the time of joining. Not only might uses be unknown, but they may be in principle unknowable at any particular time in the ongoing research processes. A further problem arises in the contexts of retrospective or secondary-use consent. Many biobank collections contain samples taken with consent for a particular research use and stored accordingly following that use. There is no universal approach to consent for secondary uses, other than it should be broadly within original parameters and with research ethics committee oversight. The Public Population Project in Genomics and Society (P3G)4 and Global Alliance for Genomics and Health (GA4GH) have developed guidance on assessing ‘legacy collections’ and consent which may assist Athlome in addressing the issue of re-use samples for international sharing.
Research
Published in Alastair V. Campbell, Bioethics, 2017
One example of this change in research values can be seen in the development of biobanks. The term ‘biobank’ denotes a very large collection of biological samples or genetic data which can be linked to the life style and health history of those individuals from whom the samples were obtained. Thus, biobanks provide a rich resource for research projects of all sorts. In the future, they will provide much better information about the complex factors that cause disease, and also about which are the most effective and inexpensive ways of either preventing the onset of disease or providing a cure. So they have the potential to be a major weapon in the fight against the major health problems facing the world at the present time.
Breast cancer glycan biomarkers: their link to tumour cell metabolism and their perspectives in clinical practice
Published in Expert Review of Proteomics, 2021
Tomas Bertok, Veronika Pinkova Gajdosova, Aniko Bertokova, Natalia Svecova, Peter Kasak, Jan Tkac
There is no doubt that a great potential lies in analysing these aberrant glycan structures in order to enhance the accuracy of cancer detection, as well as to provide an insight into early onset of the disease and for further diagnostic/prognostic applications. However, one important limitation in BCa glycan-based research is worth mentioning, i.e. having access to the samples necessary for these kinds of studies. Samples are usually obtained from specialised institutions known as biobanks. According to the OECD, a biobank is “a collection of biological material and the associated data and information stored in an organised system, for a population or a large subset of a population“ [53]. The biological material includes fixed or stabilised and properly stored specimens (paraffin-embedded specimens, frozen tissues or bodily fluids, for example). However, as proposed in a recent study by Krieger and Jahn, social data gaps in sample documentation should be taken into account and eliminated in order to address cancer inequities (socioeconomic, sociodemographic and geographic data) [54].
Preserving extracellular vesicles for biomedical applications: consideration of storage stability before and after isolation
Published in Drug Delivery, 2021
Fumin Yuan, Ya-Min Li, Zhuhui Wang
As EVs have shown potentials for theranostic applications, the collection of existing samples in the biobank is feasible for the analysis of small EVs (sEVs). Various kinds of biofluids contain EVs. Storage of biofluids seems to be inevitable before isolating EVs as most samples were obtained from the biobank and cannot be processed freshly (Figure 1). Hence, a challenge is that samples in the biobank could have been stored for a long term. In addition, samples in the biobank are often stored in freezers and may expose to freeze–thaw cycles. Determining the impact of storage conditions on samples before EV collection would help researchers to place samples in an optimal environment and utilize them without affecting properties EVs. Studies reporting the influence of storage conditions of different biofluids samples on EVs were summarized (Table 1).
Transthyretin-stabilising mutation T119M is not associated with protection against vascular disease or death in the UK Biobank
Published in Amyloid, 2020
Margaret M. Parker, Simina Ticau, James Butler, David Erbe, Madeline Merkel, Emre Aldinc, Gregory Hinkle, Paul Nioi
The UK Biobank is a population-based prospective cohort study that recruited ∼500,000 participants aged 40–69 years in England, Wales, and Scotland between 2006 and 2010. Participants had to live within 25 miles of one of the 22 assessment centres and participate in a baseline assessment involving the collection of extensive data from questionnaires, health records, physical measurements, imaging, and biologic samples [27]. This analysis included all UK Biobank participants classified as unrelated, white British based on a combination of self-reported ancestry and genetic principal components (n = 337,148) [28]. Data used in this analysis were accessed through UK Biobank application 26,041 and are publicly available upon request to the UK Biobank. The UK Biobank holds ethical approval and all participants provided written informed consent.