Genomes and Genes
biological specimen banks
Summary: Facilities that collect, store, and distribute tissues, e.g., cell lines, microorganisms, blood, sperm, milk, breast tissue, for use by others. Other uses may include transplantation and comparison of diseased tissues in the identification of cancer.
- Henderson G, Juengst E, King N, Kuczynski K, Michie M. What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011. J Law Med Ethics. 2012;40:1008-24 pubmed publisher..quot; ..
- Harris J, Burton P, Knoppers B, Lindpaintner K, Bledsoe M, Brookes A, et al. Toward a roadmap in global biobanking for health. Eur J Hum Genet. 2012;20:1105-11 pubmed publisher..A common vision is required and we articulate the essential basis of such a vision herein. ..
- Joly Y, Zeps N, Knoppers B. Genomic databases access agreements: legal validity and possible sanctions. Hum Genet. 2011;130:441-9 pubmed publisher..This suggests the importance for researchers to undertake additional empirical studies on the clarity and accessibility of existing database access agreements and related policies in the near future. ..
- Vaught J, Lockhart N. The evolution of biobanking best practices. Clin Chim Acta. 2012;413:1569-75 pubmed publisher..In contrast to the more straightforward technical and management issues, ethical and regulatory practices often involve issues that are more controversial and difficult to standardize. ..
- Avard D, Sénécal K, Madadi P, Sinnett D. Pediatric research and the return of individual research results. J Law Med Ethics. 2011;39:593-604 pubmed publisher..By reviewing policies and the literature, we present some overarching considerations and delineate contextual issues in order to propose a framework. ..
- Elliott P, Peakman T. The UK Biobank sample handling and storage protocol for the collection, processing and archiving of human blood and urine. Int J Epidemiol. 2008;37:234-44 pubmed publisher..Experience from recruiting and processing the first 40,000 participants to the study demonstrates that the adopted methods and technologies are fit-for-purpose and robust. ..
- Fortin S, Pathmasiri S, Grintuch R, Deschenes M. 'Access arrangements' for biobanks: a fine line between facilitating and hindering collaboration. Public Health Genomics. 2011;14:104-14 pubmed publisher..Last, the paper presents how Public Population Project in Genomics (P(3)G) facilitates the work of biobankers and improves collaboration throughout the international human genomics research community. ..
- Kisand K, Kerna I, Kumm J, Jonsson H, Tamm A. Impact of cryopreservation on serum concentration of matrix metalloproteinases (MMP)-7, TIMP-1, vascular growth factors (VEGF) and VEGF-R2 in Biobank samples. Clin Chem Lab Med. 2011;49:229-35 pubmed publisher..A temperature -20°C is unsuitable for prolonged storage of the biomarkers investigated, and repeated thawing of sera is not recommended. VEGF is especially unstable and should be quantitated using serum that has never been frozen. ..
- Peakman T, Elliott P. The UK Biobank sample handling and storage validation studies. Int J Epidemiol. 2008;37 Suppl 1:i2-6 pubmed publisher..The validation studies reported in this supplement provide justification for the sample handling and storage procedures adopted in the UK Biobank project. ..
- Petrini C. "Broad" consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Soc Sci Med. 2010;70:217-20 pubmed publisher..Particular attention is given to the expressed positions of national and international bioethics bodies. ..
- Eriksson S, Helgesson G. Potential harms, anonymization, and the right to withdraw consent to biobank research. Eur J Hum Genet. 2005;13:1071-6 pubmed..Still, this underlines the fact that we all share a responsibility for health research and that no one should take withdrawal from biobank research lightly. ..
- Rothstein M. Expanding the ethical analysis of biobanks. J Law Med Ethics. 2005;33:89-101 pubmed
- Clayton E. Informed consent and biobanks. J Law Med Ethics. 2005;33:15-21 pubmed
- Fan M, Tsai J, Chen B, Fan K, Labaer J. A central repository for published plasmids. Science. 2005;307:1877 pubmed
- Rothstein M. The role of IRBs in research involving commercial biobanks. J Law Med Ethics. 2002;30:105-8 pubmed
- Charo R. Body of research--ownership and use of human tissue. N Engl J Med. 2006;355:1517-9 pubmed
- Kaufman D, Geller G, LeRoy L, Murphy J, Scott J, Hudson K. Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion. Am J Med Genet C Semin Med Genet. 2008;148C:31-9 pubmed publisher..To successfully include children, proposed cohort study would need to address children's changing capabilities and rights as they grow and reach the age of consent. ..
- Dunn W, Broadhurst D, Ellis D, Brown M, Halsall A, O Hagan S, et al. A GC-TOF-MS study of the stability of serum and urine metabolomes during the UK Biobank sample collection and preparation protocols. Int J Epidemiol. 2008;37 Suppl 1:i23-30 pubmed publisher..Based on this small pilot study, the UK Biobank sampling, transport and fractionation protocols are considered suitable to provide samples, which can produce scientifically robust and valid data in metabolomic studies. ..
- Cambon Thomsen A. Assessing the impact of biobanks. Nat Genet. 2003;34:25-6 pubmed
- ..The difficult question regarding the return of information to research subjects is the focus of the current research, but a helpful analysis of some of the issues at stake and concrete recommendations have recently been suggested. ..
- Steinberg K, Beck J, Nickerson D, Garcia Closas M, Gallagher M, Caggana M, et al. DNA banking for epidemiologic studies: a review of current practices. Epidemiology. 2002;13:246-54 pubmed..Each of the specimens discussed is useful for epidemiologic studies according to specific needs, which we enumerate in our conclusions. ..
- Knoppers B. Consent revisited: points to consider. Health Law Rev. 2005;13:33-8 pubmed
- Haga S, Beskow L. Ethical, legal, and social implications of biobanks for genetics research. Adv Genet. 2008;60:505-44 pubmed publisher..K., Sweden, and Estonia, and the proposal for a U.S. population cohort study. The dependence on public participation requires clear and transparent policies developed through inclusive processes. ..
- Lewis F, Maughan N, Smith V, Hillan K, Quirke P. Unlocking the archive--gene expression in paraffin-embedded tissue. J Pathol. 2001;195:66-71 pubmed
- Tupasela A, Sihvo S, Snell K, Jallinoja P, Aro A, Hemminki E. Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns. Scand J Public Health. 2010;38:46-52 pubmed publisher..This, however, did not mean that they were indifferent to the use of their samples, but most wanted the ability to control how their samples are used. ..
- Deschenes M, Sallée C. Accountability in population biobanking: comparative approaches. J Law Med Ethics. 2005;33:40-53 pubmed
- Barton R, Nicholson J, Elliott P, Holmes E. High-throughput 1H NMR-based metabolic analysis of human serum and urine for large-scale epidemiological studies: validation study. Int J Epidemiol. 2008;37 Suppl 1:i31-40 pubmed publisher..Future application of multivariate methods to data-rich studies should substantially enhance information recovery from epidemiological studies. ..
- Hansson M. Building on relationships of trust in biobank research. J Med Ethics. 2005;31:415-8 pubmed..Cumbersome restrictions on research may be lifted, thus creating a more favourable climate for medical research. ..
- Melas P, Sjöholm L, Forsner T, Edhborg M, Juth N, Forsell Y, et al. Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study. J Med Ethics. 2010;36:93-8 pubmed publisher..Measures taken from biobanks seem insufficient in maintaining and increasing trust, suggesting that broader societal measures should be taken. ..
- Allen J, McNamara B. Reconsidering the value of consent in biobank research. Bioethics. 2011;25:155-66 pubmed publisher..The paper argues that consent continues to play an important role in biobank participation and that a participant view should inform proposals to modify consent processes. ..
- García Merino I, de las Cuevas N, Jiménez J, Gallego J, Gomez C, Prieto C, et al. The Spanish HIV BioBank: a model of cooperative HIV research. Retrovirology. 2009;6:27 pubmed publisher..The main objective of this article is to show the structure and function of the HIV BioBank that allow it to very efficiently release samples to different research project not only in Spain but also in other countries. ..
- Cambon Thomsen A. The social and ethical issues of post-genomic human biobanks. Nat Rev Genet. 2004;5:866-73 pubmed publisher..is affected by two prominent ethical questions: do ethical principles prevent or promote the sharing of stored biological resources? How does the advent of large-scale biobanking alter the way in which ethical issues are addressed? ..
- Hakimian R, Korn D. Ownership and use of tissue specimens for research. JAMA. 2004;292:2500-5 pubmed
- Fong M, Braun K, Chang R. Native Hawaiian preferences for informed consent and disclosure of results from research using stored biological specimens. Pac Health Dialog. 2004;11:154-9 pubmed..These findings call into question the "Common Rule" and the guidelines of the American Society of Human Genetics, which do not require researchers to obtain informed consent for research use of anonymized specimens. ..
- Nørgaard Pedersen B, Simonsen H. Biological specimen banks in neonatal screening. Acta Paediatr Suppl. 1999;88:106-9 pubmed..1993 the biobank has been regulated by specific legislation, and thus assumes a unique position among biological specimen banks. Its purposes are: (i) diagnosis and treatment of diseases screened for, including repeat testing, ..
- Kaiser J. Biobanks. Population databases boom, from Iceland to the U.S. Science. 2002;298:1158-61 pubmed
- Hoeyer K, Olofsson B, Mjorndal T, Lynoe N. Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health. 2004;32:224-9 pubmed..The current emphasis on the question of informed consent in policy making for biobank-based research does not seem to be reflected unambiguously in the concerns of the general public. ..
- Nørgaard Pedersen B, Hougaard D. Storage policies and use of the Danish Newborn Screening Biobank. J Inherit Metab Dis. 2007;30:530-6 pubmed..The Danish NBS-Biobank has been used in several research projects for aetiological studies of a number of disorders, recently employing new sensitive multiplex technologies and genetic analyses utilizing whole-genome amplified DNA. ..
- Hens K, Nys H, Cassiman J, Dierickx K. Biological sample collections from minors for genetic research: a systematic review of guidelines and position papers. Eur J Hum Genet. 2009;17:979-90 pubmed publisher..However, a systematic reflection on the ethical and policy issues arising from the participation of minors in biobank research is missing. ..
- Godard B, Ozdemir V, Fortin M, Egalité N. Ethnocultural community leaders' views and perceptions on biobanks and population specific genomic research: a qualitative research study. Public Underst Sci. 2010;19:469-85 pubmed..These empirical data on ethnocultural community leaders' views, interests and perceptions identify several key socio-cultural and ethical factors that can be decisive for effective and sustainable community involvement in biobanks. ..
- Shickle D, Griffin M, El Arifi K. Inter- and intra-biobank networks: classification of biobanks. Pathobiology. 2010;77:181-90 pubmed publisher..Thus, this proposed classification system should help better understand these issues and identify solutions. ..
- Zuo D, Mohr S, Hu Y, Taycher E, Rolfs A, Kramer J, et al. PlasmID: a centralized repository for plasmid clone information and distribution. Nucleic Acids Res. 2007;35:D680-4 pubmed..Researchers interested in requesting clone samples or sharing their own plasmids with the repository can visit the PlasmID website for more information. ..
- Cambon Thomsen A, Rial Sebbag E, Knoppers B. Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J. 2007;30:373-82 pubmed
- Andrews L. Harnessing the benefits of biobanks. J Law Med Ethics. 2005;33:22-30 pubmed
- Hoeyer K. The role of ethics in commercial genetic research: notes on the notion of commodification. Med Anthropol. 2005;24:45-70 pubmed..When approaching these processes it is suggested that we analyze the interrelatedness of moral reasoning and forms of exchange. ..
- Ellis T, Poyser S, Knox M, Vershinin A, Ambrose M. Polymorphism of insertion sites of Ty1-copia class retrotransposons and its use for linkage and diversity analysis in pea. Mol Gen Genet. 1998;260:9-19 pubmed..P. abyssinicum is not a subgroup of cultivated P. sativum, as was previously thought, but has probably been domesticated independently. Modern cultivars are shown to form a single group within Pisum as a whole. ..