Creation Of Biobanks Research Articles

Using Data to Improve the Management of Diabetes: The Tayside Experience.

Tayside is a region in the East of Scotland and forms one of nine local government regions in the country. It is home to approximately 416,000 individuals who fall under the National Health Service (NHS) Tayside health board, which provides health care services to the population. In Tayside, Scotland, a comprehensive informatics network for diabetes care and research has been established for over 25 years. This has expanded more recently to a comprehensive Scotland-wide clinical care system, Scottish Care Information - Diabetes (SCI-Diabetes). This has enabled improved diabetes screening and integrated management of diabetic retinopathy, neuropathy, nephropathy, cardiovascular health, and other comorbidities. The regional health informatics network links all of these specialized services with comprehensive laboratory testing, prescribing records, general practitioner records, and hospitalization records. Not only do patients benefit from the seamless interconnectedness of these data, but also the Tayside bioresource has enabled considerable research opportunities and the creation of biobanks. In this article we describe how health informatics has been used to improve care of people with diabetes in Tayside and Scotland and, through anonymized data linkage, our understanding of the phenotypic and genotypic etiology of diabetes and associated complications and comorbidities.

Personalized Critical Care Medicine (Review)

Personalized medicine (PM) is a major trend in health care development in the 21st century. This area includes studying risk factors for disease development (prediction), interventions for preventing diseases (prophylaxis), individualization of diagnosis and treatment (personalization), informing the patient on disease prevention and treatment (participation). In the recent years, an intense research to introduce the personalized medicine principles into the management of critically ill patients, has been under way. This includes identification of patient groups based on genomic research, development of diagnostic tests using molecular markers, creation of novel classes of drugs based on individual patient characteristics.The aim of the review is to summarize the available data on the implementation of the principles of PM in the routine practice of critical care institutions.We analyzed more than 300 sources of literature from the Pubmed and Scopus databases, as well as the RSCI database. Eighty five most relevant sources were selected for the review. The paper reports data on the organization and results of implementation of PM principles and advanced technologies, such as Emergency Medicine Sample Bank (EMSB), in the daily activity of clinics providing emergency critical care. The formation of the novel PM concept focused on the treatment of critically ill patients has been discussed. The review contains detailed data on the patterns of development of specific critical illnesses such as acute cerebrovascular events, acute respiratory distress syndrome, traumatic brain injury, shock, myocardial infarction, cardiac rhythm and conduction disturbances. Medication efficacy in view of individual genetic patient characteristics has also been highlighted. No research limitations on the subject were identified.Conclusion. The analysis of literature has demonstrated positive results of implementing PM principles in prevention, diagnosis and treatment of critically ill patients. Creation of Biobanks, development of training programs and regulatory documentation, advancing the scientific research, introduction of new methods of diagnosis and treatment will contribute to the implementation of PM principles in practical healthcare.

Current Status and Future Challenges of Biobank Research in Malaysia.

The establishment of MyCohort in 2005 showed that there is a growing interest on the part of the Malaysian government in the creation of biobanks in the country. This project can be considered as the biggest and most comprehensive cohort study in Malaysia, where hundreds of thousands of human samples are stored for epidemiological and biomedical research. However, little is known about the current issues or the situation related to biobank research in Malaysia. There are pressing issues that need answers such as the governance of the national biobank as well as other privately owned biobanks in the nation, the public perspectives and perceptions regarding biobanks, and other matters such as the ethical, legal, and social issues related to biobank research. This article will highlight the status and issues related to biobank research in Malaysia and provide suggestions on future research practices that we feel need to be seriously considered. These suggestions are designed to advance and enlighten researchers' knowledge, as well as provide the public with information on issues associated to biobanking. Good governance increases public knowledge and trust, and religious acceptance of biobank research and accountability can lead to increased participation in biobank research. The direct implications of the discussion about the ethical, legal, and social issues of biobanks are pertinent for the foundation of knowledge relating to biobanks, as well as the forward gestures for future medicine for mankind.

Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review.

Background: During the past few decades there has been a growing interest on the part of many governments in the creation of biobanks. Nevertheless, this would be impossible without participation of many donors who offer samples of their biological material for scientific research. Therefore, the aim of this paper is to provide an overview of the existing research on social attitudes towards biobanking. Material and Methods: A literature search was conducted in the database of MEDLINE (PubMed). 61 papers were included in the analysis. The retrieved articles were assessed using a thematic analysis. Results: Eight main themes were identified: (1) public knowledge about biobanks, (2) public views on biobanking, (3) willingness to donate, (4) donors’ motivations, (5) perceived benefits and risks of biobanking, (6) preferred type of consent, (7) trust toward biobanks, and (8) demographic characteristics of potential donors. Conclusions: Although the public lacks knowledge about biobanking, many individuals declare willingness to donate. Their will is influenced by: their knowledge about biobanking, the type of donated tissue, research purpose, concerns over the safety of the data, preferred type of consent, and trust towards biobanks.

Experience with a rheumatoid arthritis biobank: analysis of biological samples and clinical data of 204 patients

A biobank is a registry, which is suitable for the storage of biological samples (e.g. tissues, DNA, protein), genetical abnormalities and clinical data. Several biobanks have been created worldwide, which contribute to research and the better understanding of disease pathogenesis, genetical polymorphisms. Biobanking also helps to improve the efficacy of therapies. Our purpose was to create an internet-based biobank, in which laboratory test results, genetic alterations and related disorders of rheumatoid arthritis (RA) patients can be registered. This biobank would be able to make the research easier and it can help to improve our knowledge about diseases and it can inhibit loss of data. We have biological samples from 204 RA patients and we have entered their data in the biobank which can be found on the website http://rheuma.biobank.eu . Statistical analysis was performed by SPSS20 statistical programme. By the creation of biobank that contains clinical data and biological samples of 204 RA patients, we have a database which can help to improve our knowledge about the disease and help to develop new treatment strategies. Biobanking is suitable to analyze blood samples and clinical data together. Orv. Hetil., 2017, 158(7), 270-277.

P-064 Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking in the CCFA Partners Cohort

The creation of biobanks is underpinned by the belief the use of human biospecimens in research will lead to scientific discoveries that will benefit society. Public surveys and focus groups demonstrate strong support for medical research, yet little is known specifically about beliefs, understanding and perceptions of biobanking among patients with certain chronic disease states, such as inflammatory bowel diseases (IBD). We aimed to further understand perceptions of biobanking in the IBD community through 1) a series of 1:1 interviews with members of the CCFA Partners cohort to understand attitudes related to biobanking and 2) a cross-sectional survey of the CCFA Partners cohort to determine patient preferences and concerns about participation in an IBD specific biobank. Participants in CCFA Partners were recruited to participate in a 1:1 telephone interview on their perceptions of the risks and benefits of contributing specimens for research, as well as various ethical and legal considerations of biobanking. The results of these interviews informed the development of a cross-sectional instrument to gauge the cohort’s perceptions of biobanking. Bivariate statistics were used to compare willingness to participate in biobanking and other factors by disease type, gender, age, and severity of disease. A total of 26 interviews were conducted with CCFA Partners cohort members. Various themes emerged from the interviews, including concerns about how specimens would be collected/stored; unauthorized access to samples and/or loss of confidentiality; use of samples for purposes outside of what was consented (or for research not related to IBD); and life insurance discrimination. Most respondents seemed unconcerned about their samples being used for genetic studies. Perceived personal and societal benefits included advancing IBD research, leading to a cure; altruistic feelings of helping others or family members with IBD; and hope that they might personally benefit, although most understood that they likely would not. These themes aided in the development of a survey instrument to assess perceptions of biobanking. A total of 824 CCFA Partners cohort members were asked to participate in a survey of perceptions of biobanking, 476 (58%) completed the survey. In all, 173 (38.3%) reported they would definitely donate samples, 253 (56.0%) would probably donate, 23(5.1%) probably not, 3(0.7%) would definitely not donate. No significant differences in willingness to donate samples were seen for Crohn’s disease (CD) versus ulcerative colitis (UC) (P = 0.95) or for remission versus active disease (P = 0.69 for CD, 0.49 for UC). For biospecimen sample types, 440(93.0%) would donate saliva, 425(89.7%) blood, and 367(77.6%) stool. A majority of IBD patients in this cohort demonstrated a willingness to donate a broad range of specimens for biobanking. Participants were more willing to donate blood or saliva samples compared to stool. Concerns about biobanks included loss of confidentiality and use of samples outside of what was consented. Patients perceived biobanking as possibly leading to a cure for IBD. Addressing concerns will aid in consent development for biobanking in IBD and promote targeted educational activities within the IBD community on biobanks.

Conservation of endangered animals: From biotechnologies to digital preservation

In the recent years, the number of endangered animals, both referred to livestock and wild species, has grown enormously. The “livestock” term refers to animals domesticated for producing commodities for man such as food, fiber and draught. Livestock biodiversity is integral to our culture, history, environment, and economy. Thousands of livestock breeds have evolved over time to suit particular environments and farming systems. Conservation and analyses of these genetic resources rely on demographic characterization and correct breeding schemes. In addition, molecular genetic studies allow to identify and monitor the genetic diversity within and across breeds and to reconstruct their evolution history. The conservation of livestock variability is also a crucial element in order to preserve and valorise specific nutritional and nutraceutical properties of animal products. Efficient ex situ and in situ conservation strategies, as well as the creation of bio-banks and specific biotechnological and bioinformatics tools for genetic analyses and digital preservation, are obligatory requirements in order to implement an appropriate action for the conservation of animal biodiversity. The main issues concerning different species are summarised, with particular reference to the livestock biodiversity still existing. Some examples of ex situ conservation strategies, which mainly refer to cryoconservation of semen, ova, embryos or tissues, developed in Italy, are presented, and the different actions in defense of Animal Genetic Resources (AnGR) developed within the European Community are illustrated. Interestingly, the same strategies for biological and digital analyses and preservation of livestock biodiversity can be exported to wild endangered animals in order to plan a correct conservation and repopulation of the species. Furthermore, the European Union has set up the guidelines to safeguard the biodiversity and to combat the extinction of animal species, and has made the protection of biodiversity and ecosystems one of the main objectives of the Sixth Environment Action Programme.

Margaret Sleeboom-Faulkner, ed. 2008. Human genetic biobanks in Asia: Politics of trust and scientific advancement

Biobanking has been broadly discussed in bioethics in the past few years, especially in Europe. There is still more to say on the topic, especially on how social factors affect policy-making in different countries. This edited volume includes ten papers examining genetic bio banking and its regulation in several Asian countries, including Japan, Mainland China, Taiwan, Hong Kong, India and Indonesia. The authors examine how cultural, socio-political and economic factors influence regulations that govern human genetic biobanks, and the ethical sensitivities surrounding biobanks in these countries. An interesting approach of the book is how it focuses on discourses of trust in national and international perspectives. Issues of genetic piracy, public goods, concepts of genetic theft and exploitation, and genetic wealth and trust are raised. This volume contains case studies of biobanking practices in societies with different needs and welfare levels, and provides insights into government strategies towards genetic resources by examining bioethics in the selected countries. The reflections are useful also for scholars in many other countries, as the related ethical principles and social interpretation of them cross many false borders that comparative bioethics has often simplified. The first paper is a general overview: “Introduction: Human Genetic Biobanking in Asia: Issues of Trust, Wealth and Ambition”, by the book’s editor, Margaret Sleeboom-Faulkner. Sleeboom-Faulkner has researched the issues for a decade in the region, and presents in the overview a number of critical issues from the perspective of an anthropologist. Part one of the book is “Biobanking in Welfare Societies”, and includes the papers “Public Trust, Commercialisation, and Benefit Sharing: Towards a Trustworthy Biobank in Taiwan”, by Hung-En Liu and Terence Hua Tai; “Biobanks in Japan: Ethics, Guidelines and Practice”, by Gerard Porter; “Trust and the Creation of Biobanks: Biobanking in Japan and the UK” by Tohru Masui; “Should We Invest in Biobanking in Hong Kong? Using Biobanking for Dyslexic Studies in Hong Kong as an Example” by Mary Miu Yee Waye and Connie Ho. These chapters also examine how the public can be convinced (or not) of the promise of the human research Bioethical Inquiry (2010) 7:259–260 DOI 10.1007/s11673-010-9234-6