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"Biological specimens"
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Basic principles of biobanking: from biological samples to precision medicine for patients
The term “biobanking” is often misapplied to any collection of human biological materials (biospecimens) regardless of requirements related to ethical and legal issues or the standardization of different processes involved in tissue collection. A proper definition of biobanks is large collections of biospecimens linked to relevant personal and health information (health records, family history, lifestyle, genetic information) that are held predominantly for use in health and medical research. In addition, the International Organization for Standardization, in illustrating the requirements for biobanking (ISO 20387:2018), stresses the concept of biobanks being legal entities driving the process of acquisition and storage together with some or all of the activities related to collection, preparation, preservation, testing, analysing and distributing defined biological material as well as related information and data. In this review article, we aim to discuss the basic principles of biobanking, spanning from definitions to classification systems, standardization processes and documents, sustainability and ethical and legal requirements. We also deal with emerging specimens that are currently being generated and shaping the so-called next-generation biobanking, and we provide pragmatic examples of cancer-associated biobanking by discussing the process behind the construction of a biobank and the infrastructures supporting the implementation of biobanking in scientific research.
Journal Article
Collecting experiments : making Big Data biology
Databases have revolutionized nearly every aspect of our lives. Information of all sorts is being collected on a massive scale, from Google to Facebook and well beyond. But as the amount of information in databases explodes, we are forced to reassess our ideas about what knowledge is, how it is produced, to whom it belongs, and who can be credited for producing it. Every scientist working today draws on databases to produce scientific knowledge. Databases have become more common than microscopes, voltmeters, and test tubes, and the increasing amount of data has led to major changes in research practices and profound reflections on the proper professional roles of data producers, collectors, curators, and analysts. Collecting Experiments traces the development and use of data collections, especially in the experimental life sciences, from the early twentieth century to the present. It shows that the current revolution is best understood as the coming together of two older ways of knowing--collecting and experimenting, the museum and the laboratory. Ultimately, Bruno J. Strasser argues that by serving as knowledge repositories, as well as indispensable tools for producing new knowledge, these databases function as digital museums for the twenty-first century.
Book
Toward a roadmap in global biobanking for health
Biobanks can have a pivotal role in elucidating disease etiology, translation, and advancing public health. However, meeting these challenges hinges on a critical shift in the way science is conducted and requires biobank harmonization. There is growing recognition that a common strategy is imperative to develop biobanking globally and effectively. To help guide this strategy, we articulate key principles, goals, and priorities underpinning a roadmap for global biobanking to accelerate health science, patient care, and public health. The need to manage and share very large amounts of data has driven innovations on many fronts. Although technological solutions are allowing biobanks to reach new levels of integration, increasingly powerful data-collection tools, analytical techniques, and the results they generate raise new ethical and legal issues and challenges, necessitating a reconsideration of previous policies, practices, and ethical norms. These manifold advances and the investments that support them are also fueling opportunities for biobanks to ultimately become integral parts of health-care systems in many countries. International harmonization to increase interoperability and sustainability are two strategic priorities for biobanking. Tackling these issues requires an environment favorably inclined toward scientific funding and equipped to address socio-ethical challenges. Cooperation and collaboration must extend beyond systems to enable the exchange of data and samples to strategic alliances between many organizations, including governmental bodies, funding agencies, public and private science enterprises, and other stakeholders, including patients. A common vision is required and we articulate the essential basis of such a vision herein.
Journal Article
Curating biocultural collections : a handbook
\"Biocultural collections document the remarkable richness and diversity of human engagements with nature. This handbook, written and edited by experts from around the world, is the first practical resource for those involved in the use and curation of such collections.\"--Page 4 of cover.
Book
UK Biobank, big data, and the consequences of non-representativeness
The sampling population is volunteer-based and is not representative of the UK population.1 Investigators state that although the estimates of prevalence and incidence should be interpreted with caution, valid measures of association and estimates of causal effect can be more readily interpreted as they do “not require participants to be representative of the population at large”.2 This statement is a puzzling claim: sample selection can indeed influence measures of association. Specifically, whether or not an association observed in a study is similar in some other target population (ie, has external validity) depends on a number of factors, including the distribution of effect measure modifiers of the exposure–outcome relationship in the study sample and target population.3 Critically, a study can have restricted external validity even when it has internal validity, which might occur in a randomised trial.4 Thus, researchers should not be quick to set aside issues of representativeness in interpreting UK Biobank results. [...]larger sample size in a skewed sample only leads to confidence in answers that might not apply to the target population. [...]it is paramount that external validity be taken more seriously in the UK Biobank and other large data resources.
Journal Article
Perception of Polish patients with cancer of the ethical and legal issues related to biobank research
Abstract
Background
Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating.
Materials and Methods
To understand patients’ perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer.
Results
While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors’ right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients’ opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence.
Conclusions
Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients’ ethical and moral concerns related to donation and offer resources to help manage these concerns.
This article reports results of a survey conducted to better understand cancer patients’ perception of ethical and legal issues related to biobanks.
Journal Article
Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey
This paper reports survey findings on the Swiss public’s willingness, attitudes, and concerns regarding personalized health research participation by providing health information and biological material. The survey reached a sample of 15,106 Swiss residents, from which we received 5,156 responses (34.1% response rate). The majority of respondents were aware of research using human biological samples (71.0%) and held a positive opinion towards this type of research (62.4%). Of all respondents, 53.6% indicated that they would be willing to participate in a personalized health research project. Willingness to participate was higher in younger, higher educated, non-religious respondents with a background in the health sector. Respondents were more willing to provide ‘traditional’ types of health data, such as health questionnaires, blood or biological samples, as opposed to social media or app-related data. All respondents valued the return of individual research results, including risk for diseases for which no treatment is available. Our findings highlight that alongside general positive attitudes towards personalized health research using data and samples, respondents have concerns about data privacy and re-use. Concerns included potential discrimination, confidentiality breaches, and misuse of data for commercial or marketing purposes. The findings of this large-scale survey can inform Swiss research institutions and assist policymakers with adjusting practices and developing policies to better meet the needs and preferences of the public. Efforts in this direction could focus on research initiatives engaging in transparent communication, education, and engagement activities, to increase public understanding and insight into data sharing activities, and ultimately strengthen personalized health research efforts.
Journal Article