Search results for 'Biobanks' (try it on Scholar)

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  1. Jean V. McHale (2011). Accountability, Governance and Biobanks: The Ethics and Governance Committee as Guardian or as Toothless Tiger? [REVIEW] Health Care Analysis 19 (3):231-246.score: 18.0
    The huge potential of biobanks/genetic databases for the research community has been recognised across jurisdictions in both publicly funded and commercial sectors. But although there is tremendous potential there are likewise potential difficulties. The long-term storage of personal health information and samples poses major challenges. This is an area is fraught with ethical and legal uncertainties. Biobanks raise many questions of the control of rights, of consent, of privacy and confidentiality and of property in human material. It is (...)
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  2. Mats Hansson (2012). Where Should We Draw the Line Between Quality of Care and Other Ethical Concerns Related to Medical Registries and Biobanks? Theoretical Medicine and Bioethics 33 (4):313-323.score: 18.0
    Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I suggest that quality with regard to diagnosis and treatment is (...)
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  3. Margaret Sleeboom-Faulkner (ed.) (2009). Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.score: 16.0
    This volume investigates human genetic biobanking and its regulation in various Asian countries and areas, including Japan, Mainland China, Taiwan, Hong Kong, ...
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  4. Sigrid Sterckx & Kristof van Assche (2011). The New Belgian Law on Biobanks: Some Comments From an Ethical Perspective. Health Care Analysis 19 (3):247-258.score: 16.0
    On 19 December 2008 the Official Journal of Belgium published the ‘Law regarding the procurement and use of human body material destined for human medical applications or for scientific research purposes’. This paper will comment on various aspects of the Law: its scope of application (what is understood by ‘body material’?); its concept of ‘residual human body material’ (with far-reaching implications for the type of consent required for research); the nature of actions with and uses of human body material that (...)
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  5. Antonio Casado da Rocha & José Antonio Seoane (2008). Alternative Consent Models for Biobanks: The New Spanish Law on Biomedical Research. Bioethics 22 (8):440-447.score: 15.0
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  6. Jane Kaye (ed.) (2012). Governing Biobanks: Understanding the Interplay Between Law and Practice. Hart Pub..score: 15.0
     
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  7. Giovanni Boniolo, Pier Paolo di Fiore & Salvatore Pece (2012). Trusted Consent and Research Biobanks: Towards a 'New Alliance' Between Researchers and Donors. Bioethics 26 (2):93-100.score: 14.0
    We argue that, in the case of research biobanks, there is a need to replace the currently used informed consent with trusted consent. Accordingly, we introduce a proposal for the structure of the latter. Further, we discuss some of the issues that can be addressed effectively through our proposal. In particular, we illustrate: i) which research should be authorized by donors; ii) how to regulate access to information; iii) the fundamental role played by a Third Party Authority in assuring (...)
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  8. Mairi Levitt (2011). Relating to Participants: How Close Do Biobanks and Donors Really Want to Be? [REVIEW] Health Care Analysis 19 (3):220-230.score: 14.0
    Modern biobanks typically rely on the public to freely donate genetic data, undergo physical measurements and tests, allow access to medical records and give other personal information by questionnaire or interview. Given the demands on participants it is not surprising that there has been extensive public consultation even before biobanks in the UK and elsewhere began to recruit. This paper considers the different ways in which biobanks have attempted to engage and appeal to their publics and the (...)
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  9. Min Liu & Qingli Hu (2014). A Proposed Approach to Informed Consent for Biobanks in China. Bioethics 28 (4):181-186.score: 14.0
    Biobanks are potential goldmines for genomics research. They have become increasingly common as a means to determine the relationship between lifestyle, environmental exposures and predisposition to genetic disease. More and more countries are developing massive national scale biobanks, including Iceland, the UK and Estonia. Now several large-scale regional and national biobanks are planned in China, such as Shanghai Biobank, which is defined as a key-element in Shanghai's twelfth five-year Development Plan of Science and Technology. It is imperative (...)
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  10. Min Liu & Qingli Hu (2012). A Proposed Approach to Informed Consent for Biobanks in China. Bioethics 9702 (4):222-227.score: 14.0
    Biobanks are potential goldmines for genomics research. They have become increasingly common as a means to determine the relationship between lifestyle, environmental exposures and predisposition to genetic disease. More and more countries are developing massive national scale biobanks, including Iceland, the UK and Estonia. Now several large-scale regional and national biobanks are planned in China, such as Shanghai Biobank, which is defined as a key-element in Shanghai's twelfth five-year Development Plan of Science and Technology. It is imperative (...)
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  11. Carla Truyers, Eliane Kellen, Marc Arbyn, Leen Trommelmans, Herman Nys, Karen Hensen, Bert Aertgeerts, Stefaan Bartholomeeusen, Mats Hansson & Frank Buntinx (2010). The Use of Human Tissue in Epidemiological Research; Ethical and Legal Considerations in Two Biobanks in Belgium. Medicine, Health Care and Philosophy 13 (2):169-175.score: 14.0
    This paper discusses the legal implications of setting up two new biobanks in Belgium. The first is hospital-based and will archive tissue from patients with haematologic cancer, whereas the second is linked to a general practice based morbidity registry and will involve storage of blood samples. To date, Belgium has no specific legislation that regulates storage of human tissue and related databases. Several issues concerning the protection of individuals with regard to the processing of personal medical data are discussed (...)
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  12. Judy Allen & Beverley Mcnamara (2011). Reconsidering the Value of Consent in Biobank Research. Bioethics 25 (3):155-166.score: 12.0
    Biobanks for long-term research pose challenges to the legal and ethical validity of consent to participate. Different models of consent have been proposed to answer some of these challenges. This paper contributes to this discussion by considering the meaning and value of consent to participants in biobanks. Empirical data from a qualitative study is used to provide a participant view of the consent process and to demonstrate that, despite limited understanding of the research, consent provides the research participants (...)
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  13. Darryl Macer (2010). Margaret Sleeboom-Faulkner, Ed. 2008. Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. [REVIEW] Journal of Bioethical Inquiry 7 (2):259-260.score: 12.0
    Margaret Sleeboom-Faulkner, ed. 2008. Human genetic biobanks in Asia: Politics of trust and scientific advancement Content Type Journal Article DOI 10.1007/s11673-010-9234-6 Authors Darryl Macer, UNESCO Bangkok Regional Adviser in Social and Human Sciences for Asia and the Pacific, Regional Unit for Social and Human Sciences in Asia and the Pacific (RUSHSAP) 920 Sukhumvit Road, Prakanong Bangkok 10110 Thailand Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529 Journal Volume Volume 7 Journal Issue Volume 7, Number 2.
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  14. K. S. Steinsbekk & B. Solberg (2011). Biobanks--When is Re-Consent Necessary? Public Health Ethics 4 (3):236-250.score: 12.0
    The unknown nature of tomorrow’s research makes informed consent in biobank research a challenge. Whether the consent given by biobank participants is ‘broad’ or ‘narrow’, the ever present question remains the same: are new activities covered by the original consent? In this article, we focus on the meaning of, and the relation between, broad consent and re-consent in biobank research. We argue that broad consent should be understood as consenting to a framework—a framework which covers aims, core conditions for acceptable (...)
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  15. Søren Holm (2011). Withdrawing From Research: A Rethink in the Context of Research Biobanks. [REVIEW] Health Care Analysis 19 (3):269-281.score: 12.0
    It is generally assumed in research ethics that research participants have an unconditional right to withdraw from research without any detriment or reprisal. This paper analyses this right in the context of biobank research and argues that the traditional shape of the right in clinical research can be modified in biobank research without incurring significant ethical cost. The paper falls in three parts. The first part is a brief explication of the philosophical justification of the right to withdraw. The second (...)
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  16. B. Parodi (2013). Clinical Biobanks in Italy and Liguria: Ethical and Social Issues, Initiatives at the National, Regional and Local Level. Research Ethics 9 (2):78-85.score: 12.0
    This article aims to revise the ethical and social implications for clinical biobanks and their application in Italy, in the Liguria Region and in a comprehensive cancer centre in Genoa. The policies already in place in the regional network and in the IST National Institute for Cancer Research in terms of involvement of the community of patients and citizens are described, as well as the future development of initiatives aimed at improving the active participation of the community. The author (...)
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  17. Luciana Caenazzo, Pamela Tozzo & Renzo Pegoraro (2013). Biobanking Research on Oncological Residual Material: A Framework Between the Rights of the Individual and the Interest of Society. [REVIEW] BMC Medical Ethics 14 (1):17.score: 12.0
    The tissue biobanking of specific biological residual materials, which constitutes a useful resource for medical/scientific research, has raised some ethical issues, such as the need to define which kind of consent is applicable for biological residual materials biobanks.
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  18. K. C. O'Doherty & M. M. Burgess (2013). Public Deliberation to Develop Ethical Norms and Inform Policy for Biobanks: Lessons Learnt and Challenges Remaining. Research Ethics 9 (2):55-77.score: 12.0
    Public participation is increasingly an aspect of policy development in many areas, and the governance of biomedical research is no exception. There are good reasons for this: biomedical research relies on public funding; it relies on biological samples and information from large numbers of patients and healthy individuals; and the outcomes of biomedical research are dramatically and irrevocably changing our society. There is thus arguably a democratic imperative for including public values in strategic decisions about the governance of biomedical research. (...)
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  19. Elaine Gibson, Kevin Brazil, Michael D. Coughlin, Claudia Emerson, Francois Fournier, Lisa Schwartz, Karen V. Szala-Meneok, Karen M. Weisbaum & Donald J. Willison (2008). Who's Minding the Shop? The Role of Canadian Research Ethics Boards in the Creation and Uses of Registries and Biobanks. BMC Medical Ethics 9 (1):17-.score: 12.0
    BackgroundThe amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and (...)
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  20. Zisis Kozlakidis, Robert Js Cason, Christine Mant & John Cason (2012). Human Tissue Biobanks: The Balance Between Consent and the Common Good. Research Ethics 8 (2):113-123.score: 12.0
    Biobanks are currently archiving human materials for medical research at a hitherto unprecedented rate. These valuable resources will be essential for developing ‘personalized’ medicines and for a better understanding of disease susceptibilities. However, for such scientific advances to benefit everyone, it is crucial that biobanks recruit donations from all sections of the community. Unfortunately, other initiatives, such as transplant programmes, have clearly demonstrated that ethnic minorities are under-represented. Here we suggest that this issue deserves serious consideration to avoid (...)
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  21. Sebastian Schleidgen (2008). Sustainable Development and Bioethics – Ethical Thoughts on Decisions About Establishing Biobanks. Proceedings of the Xxii World Congress of Philosophy 10:369-374.score: 12.0
    The so-called Brundtland-Report defines Sustainable Development as a conception of intra- and intergenerational justice, which is to be realized by a globally just distribution of possibilities for satisfying human basic needs as well as assuring such possibilities for future generations. Hence, any political and/or societal decision is addressed by the ethical demands of Sustainable Development insofar it affects possibilities for satisfying human basic needs. In particular, this concerns – contrary to the widespread opinion that Sustainable Development only has to deal (...)
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  22. Luciano Vellón & Angel G. Martin (2011). Stem Cell Biobanks for Research. Dilemata 7:1-16.score: 12.0
    The collection and storage of human tissue samples has been present in medicine for centuries, however, biobanking has recently become a dedicated activity. The technological developments that have allowed the isolation, storage and long term viability of human cells ex vivo, and to obtain relevant scientific information, including genetic information, open tremendous possibilities for advancing biomedical research. At the same time, these possibilities have raised complex ethical issues regarding tissue donors, researchers using samples and society awareness of biobanking as a (...)
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  23. Ma'N. H. Zawati & Amélie Rioux (2011). Biobanks and the Return of Research Results: Out with the Old and In with the New? Journal of Law, Medicine and Ethics 39 (4):614-620.score: 12.0
    This article examines the complex and contemporary issue of the return of research results in biobanks. After suggesting the exclusion of some adjacent issues usually flanking the debate, this article reviews the current practices of biobanks on the disclosure of research results to participants. It then focuses more specifically on the debate in the literature before turning to a review of the typology of recent reforms being put forward.
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  24. Tohru Masui (2009). Trust and the Creation of Biobanks : Biobanking in Japan and the UK. In Margaret Sleeboom-Faulkner (ed.), Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.score: 12.0
     
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  25. Gerard Porter (2009). Biobanks in Japan : Ethics, Guidelines and Practice. In Margaret Sleeboom-Faulkner (ed.), Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge.score: 12.0
     
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  26. Pamela Tozzo, Renzo Pegoraro & Luciana Caenazzo (2010). Biobanks for Non-Clinical Purposes and the New Law on Forensic Biobanks: Does the Italian Context Protect the Rights of Minors? Journal of Medical Ethics 36 (12):775-778.score: 12.0
    Biobanks are an important resource for medical research. Genetic research on biological material from minors can yield valuable information that can improve our understanding of genetic–environmental interactions and the genesis and development of early onset genetic disorders. The major ethical concerns relating to biobanks concern consent, privacy, confidentiality, commercialisation, and the right to know or not to know. However, research on paediatric data raises specific governance and ethical questions with regard to consent and privacy. We have considered the (...)
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  27. H. Widdows & S. Cordell (2011). Why Communities and Their Goods Matter: Illustrated with the Example of Biobanks. Public Health Ethics 4 (1):14-25.score: 10.0
    It is now being recognized across the spectrum of bioethics, and particularly in genetics and population ethics, that to focus on the individual person, and thereby neglect communities and the goods which accrue to them, is to fail to see all the ethically significant features of a range of ethical issues. This article argues that more work needs to be done in order for bioethics to respect not only goods (such as rights and interests) of communities per se, but also (...)
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  28. Sean Cordell (2011). The Biobank as an Ethical Subject. Health Care Analysis 19 (3):282-294.score: 10.0
    This paper argues that a certain way of thinking about the function of the biobank—about what it does and is constructed for as a social institution aimed at ‘some good’—can and should play a substantial role in an effective biobanking ethic. It first exemplifies an ‘institution shaped gap’ in the current field of biobanking ethics. Next the biobank is conceptualized as a social institution that is apt for a certain kind of purposive functional definition such that we know it by (...)
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  29. Antonio Casado Rochdaa & José Antonio Seoane (2008). Alternative Consent Models for Biobanks: The New Spanish Law on Biomedical Research. Bioethics 22 (8):440-447.score: 10.0
    This article provides an overview of recent contributions to the debate on the ethical use of previously collected biobank samples, as well as a country report about how this issue has been regulated in Spain by means of the new Biomedical Research Act, enacted in the summer of 2007. By contrasting the Spanish legal situation with the wider discourse of international bioethics, we identify and discuss a general trend moving from the traditional requirements of informed consent towards new models more (...)
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  30. Flora Colledge, Kirsten Persson, Bernice Elger & David Shaw (2014). Sample and Data Sharing Barriers in Biobanking: Consent, Committees, and Compromises. Annals of Diagnostic Pathology 18 (2):78-81.score: 10.0
    The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a (...)
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  31. David Shaw, Bernice Elger & Flora Colledge (2014). What is a Biobank? Differing Definitions Among Biobank Stakeholders. Clinical Genetics 85 (3):223-7.score: 10.0
    Aim: While there is widespread agreement on the broad aspects of what constitutes a biobank, there is much disagreement regarding the precise definition. This research aimed to describe and analyse the definitions of the term biobank offered by various stakeholders in biobanking. Methods: Interviews were conducted with 36 biobanking stakeholders with international experience currently working in Switzerland. Results: The results show that, in addition to the core concepts of biological samples and linked data, the planned use of samples (including sharing) (...)
     
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  32. Alexander Morgan Capron, Alexandre Mauron, Bernice Simone Elger, Andrea Boggio, Agomoni Ganguli-Mitra & Nikola Biller-Andorno (2009). Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings From an International Study. Kennedy Institute of Ethics Journal 19 (2):101-124.score: 9.0
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  33. Alexander Morgan Capron Alexandre Mauron Bernice Simone Elger Andrea Boggio Agomoni Ganguli-Mitra Nikola Biller-Andorno (2009). Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings From an International Study. Kennedy Institute of Ethics Journal 19 (2):pp. 101-124.score: 9.0
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  34. Ellen Wright Clayton (2005). Informed Consent and Biobanks. Journal of Law, Medicine and Ethics 33 (1):15-21.score: 9.0
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  35. D. Mascalzoni, P. Pramstaller & C. Corradetti (2013). Invited Editorial: Patient Centric Initiatives (PCIs) - a Shift in the Governance of Science: Lessons From the Biobanks World. Research Ethics 9 (2):52-54.score: 9.0
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  36. George J. Annas, Patricia Roche & Leonard H. Glantz (2010). Gift Giving to Biobanks. American Journal of Bioethics 10 (9):33-34.score: 9.0
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  37. Christian Munthe (2003). The Use of Human Biobanks. Ethical, Social, Economical, and Legal Aspects: Edited by M G Hansson. Uppsala University, 2001, Free, Pp 93. ISBN 91-506-1472-X. [REVIEW] Journal of Medical Ethics 29 (2):123-a-123.score: 9.0
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  38. Darren Shickle (2006). The Consent Problem Within DNA Biobanks. Studies in History and Philosophy of Science Part C 37 (3):503-519.score: 9.0
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  39. Sven Ove Hansson (2004). The Ethics of Biobanks. Cambridge Quarterly of Healthcare Ethics 13 (04):319-326.score: 9.0
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  40. Bartha M. Knoppers, Edward S. Dove & Ma'N. H. Zawati (2013). Demystifying Biobanks. Hastings Center Report 43 (5):4-5.score: 9.0
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  41. Eve S. McCulloch (2013). Balancing Privacy and Progress: Biobanks and Genome Sequencing. Bioscience 63 (5):333-334.score: 9.0
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  42. Mats G. Hansson (2006). Combining Efficiency and Concerns About Integrity When Using Human Biobanks. Studies in History and Philosophy of Science Part C 37 (3):520-532.score: 9.0
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  43. Lamy I. Palmer (2005). Should Liability Play a Role in Social Control of Biobanks? Journal of Law, Medicine and Ethics 33 (1):70-78.score: 9.0
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  44. Alan Petersen (2011). The Ethics of Expectations: Biobanks and the Promise of Personalised Medicine. Monash Bioethics Review 28 (1):05-1.score: 9.0
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  45. Mark A. Rothstein (2005). Expanding the Ethical Analysis of Biobanks. Journal of Law, Medicine and Ethics 33 (1):89-101.score: 9.0
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  46. Lori B. Andrews (2005). Harnessing the Benefits of Biobanks. Journal of Law, Medicine and Ethics 33 (1):22-30.score: 9.0
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  47. Ames Dhai (2013). Establishing National Biobanks in South Africa: The Urgent Need for an Ethico-Regulatory Framework. South African Journal of Bioethics and Law 6 (2):38.score: 9.0
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  48. Brenda M. Simon (2007). How to Get a Fair Share: IP Policies for Publicly Supported Biobanks. In Laurie DiMauro (ed.), Ethics. Greenhaven Press. 440--441.score: 9.0
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  49. Mary R. Anderlik (2003). Commercial Biobanks and Genetic Research: Banking Without Checks? In Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. Martinus Nijhoff. 345--373.score: 9.0
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