Ethics and biobanks

Biobank research has been the focus of great interest of scholars and regulatory bodies who have addressed different ethical issues. On the basis of a review of the literature it may be concluded that, regarding some major themes in this discussion, a consensus seems to emerge on the international scene after the regular exchange of arguments in scientific journals. Broad or general consent is emerging as the generally preferred solution for biobank studies and straightforward instructions for coding will optimise privacy while facilitating research that may result in new methods for the prevention of disease and for medical treatment. 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.

[1]  R. Chadwick,et al.  The Ethics and Governance of Human Genetic Databases: The impact of biobanks on ethical frameworks , 2007 .

[2]  J. Kaye,et al.  Governing Genetic Databases: Collection, Storage and Use , 2007, King's law journal : KLJ.

[3]  Timothy Caulfield,et al.  Biobanks and Blanket Consent: The Proper Place of the Public Good and Public Perception Rationales , 2007 .

[4]  A. Campbell The Ethical Challenges of Genetic Databases: Safeguarding Altruism and Trust , 2007 .

[5]  R. Kington,et al.  Consent for genetic research in a general population: The NHANES experience , 2003, Genetics in Medicine.

[6]  H. Greely The uneasy ethical and legal underpinnings of large-scale genomic biobanks. , 2007, Annual review of genomics and human genetics.

[7]  Joakim Dillner,et al.  Ethical framework for previously collected biobank samples , 2007, Nature Biotechnology.

[8]  G. Laurie Evidence of support for biobanking practices , 2008, BMJ : British Medical Journal.

[9]  Emilie Devries-Seguin Genomic Databases and International Collaboration , 2007 .

[10]  C. Jackson,et al.  Human Tissue and ‘the Public’: The Case of Childhood Cancer Tumour Banking , 2008 .

[11]  M. Dixon-Woods,et al.  Consent for childhood cancer tissue banking in the UK: the effect of the Human Tissue Act 2004. , 2007, The Lancet. Oncology.

[12]  Joakim Dillner,et al.  Should donors be allowed to give broad consent to future biobank research? , 2006, The Lancet. Oncology.

[13]  B. Elger,et al.  Consent and anonymization in research involving biobanks , 2006, EMBO reports.

[14]  B. Lo,et al.  Untapped potential: IRB guidance for the ethical research use of stored biological materials. , 2004, IRB.

[15]  Anne Cambon-Thomsen,et al.  The social and ethical issues of post-genomic human biobanks , 2004, Nature Reviews Genetics.

[16]  Anika Ashok,et al.  ICH Harmonised Tripartite Guideline , 2009 .

[17]  Vilhjalmur Arnason,et al.  Coding and Consent: Moral Challenges of the Database Project in Iceland , 2004, Bioethics.

[18]  Timothy Caulfield,et al.  DNA databanks and consent: A suggested policy option involving an authorization model , 2003, BMC medical ethics.

[19]  Johane Patenaude,et al.  A biobank management model applicable to biomedical research , 2006, BMC medical ethics.

[20]  Susanne B Haga,et al.  Ethical, legal, and social implications of biobanks for genetics research. , 2008, Advances in genetics.

[21]  Aart Hendriks,et al.  Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine. , 2000, The Journal of medicine and philosophy.

[22]  B. Knoppers,et al.  Trends in ethical and legal frameworks for the use of human biobanks , 2007, European Respiratory Journal.

[23]  M. Hansson Balancing the quality of consent. , 1998, Journal of medical ethics.

[24]  D. Shickle The consent problem within DNA biobanks. , 2006, Studies in history and philosophy of biological and biomedical sciences.

[25]  M. Hansson,et al.  Building on relationships of trust in biobank research , 2005, Journal of Medical Ethics.

[26]  David Wendler,et al.  One-time general consent for research on biological samples , 2006, BMJ : British Medical Journal.

[27]  S. Eriksson,et al.  Potential harms, anonymization, and the right to withdraw consent to biobank research , 2005, European Journal of Human Genetics.

[28]  Frances P Lawrenz,et al.  Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations , 2008, The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics.

[29]  Stephanie L. Anderson GENETIC PRIVACY: A CHALLENGE TO MEDICO-LEGAL NORMS , 2004, The Journal of legal medicine.

[30]  Bartha Maria Knoppers,et al.  Human genetic research: emerging trends in ethics , 2006, Nature Reviews Genetics.