Anderlik, M.R. 2003. Commercial biobanks and genetic research: ethical and legal issues. American Journal of Pharmacogenomics 3: 203–215.
Article
Google Scholar
Assisted Human Reproduction Act. 2004. Retrieved from the Government of Canada Justice Laws website http://laws-lois.justice.gc.ca/eng/acts/A-13.4/.
Bjorn, G. 2008. Barriers set up to protect genome databases. Nature Medicine 14: 996.
Article
Google Scholar
Budimir, D., O. Polasek, A. Marusic, I. Kolcic, T. Zemunik, V. Boraska, A. Jeroncic, M. Boban, H. Campbell, and I. Rudan. 2011. Ethical aspects of human biobanks: A systematic review. Croatian Medical Journal 52(3): 262–279.
Article
Google Scholar
Burgess, M., K. O’Doherty, and D. Secko. 2008. Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement. Personalized Medicine 5(3): 285–296.
Article
Google Scholar
Cambon-Thomsen, A., E. Rial-Sebbag, and B.M. Knoppers. 2007. Trends in ethical and legal frameworks for the use of human biobanks. European Respiratory Journal 30: 373–382.
Article
Google Scholar
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. 2010.
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. December 2014.
Capron, A.M., A. Mauron, B.S. Elger, A. Ganguli-Mitra, and N. 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.
Article
Google Scholar
Caulfield, T. 2014. Who owns your tissue? You’d be Surprised. Canada: The Globe and Mail.
Google Scholar
Caulfield, T., A.L. McGuire, M. Cho, J. A. Buchanan, M.M. Burgess, U. Danilczyk et al. 2008. Research ethics recommendations for whole-genome research: Consensus statement. PLOS Biology 6: 73
Article
Google Scholar
Caulfield, T., S. Burningham, Y. Joly, A. Master, M. Shabani et al. 2014. A review of the key issues associated with the commercialization of biobanks. Journal of Law and the Biosciences 1(1): 94–110.
Article
Google Scholar
CIHR. 2013. Updated guidelines for human pluripotent stem cell research. Retrieved 5 October, 2014 from http://www.cihr-irsc.gc.ca/e/42071.html.
CIHR. 2014. Stem Cell Oversight Committee. Retrieved 5 October, 2014 from http://www.cihr-irsc.gc.ca/e/19306.html. Accessed 5 Oct 2014
Clemence, M., N. Gilby, J. Shah, J. Swiecicka, D. Warren, P. Smith, J. Johnson, S. Nissen, F. Hoolahan, and J. d’Souza. 2013. Wellcome Trust Monitor Wave 2: Tracking Public Views on Science. London: Biomedical Research and Science Education.
Google Scholar
Dickenson, D. 2007. Property in the body: Feminist perspectives. Cambridge: Cambridge University Press.
Book
Google Scholar
Government of Canada. (2010). Guidelines for human pluripotent stem cell research: National registry of human embryonic stem cell lines. Retrieved 5 October, 2014 from http://www.cihr-irsc.gc.ca/e/39580.html.
Haddow, G., G. Laurie, S. Cunningham-Burley, and K.G. Hunter. 2007. Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal. Social Science and Medicine 64: 272–282.
Article
Google Scholar
Hansson, M.G. 2009. Ethics and biobanks. British Journal of Cancer 100: 8–12.
Article
Google Scholar
Hansson, M.G., J. Dillner, C.R. Bartram, J.A. Carlson, and G. Helgesson. 2006. Should donors be allowed to give broad consent to future biobank research? Lancet Oncology 7: 266–269.
Article
Google Scholar
Homer, N., S. Szelinger, M. Redman, D. Duggan, W. Trembe, J. Meuhling,…D.W. Craig. 2008. Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping micro-arrays. PLOS Genetics 4.
Kaufman, D.J., J. Murphy-Bollinger, J. Scott, and K.L. Hudson. 2009. Public opinion about the importance of privacy in biobank research. The American Journal of Human Genetics 85(5): 643–654.
Article
Google Scholar
Kaye, J. 2011. From single biobanks to international networks: developing e-governance. Human Genetics 130: 377–382.
Article
Google Scholar
Kaye, J., E.A. Whitley, N. Kanelloupoulou, S. Creese, S. Hughes, and D. Lund. 2011. Dynamic consent: A solution to a perennial problem? BMC 343: d6900.
Article
Google Scholar
Knoppers, B.M., M. Deschenes, M.H. Zawati, and A.M. Tasse. 2012. Population studies: Return of research results and incidental findings policy statement. European Journal of Human Genetics 21: 245–247.
Article
Google Scholar
Koenig, B.A. 2014. Have we asked too much of consent? Hastings Centre Report 44(4): 33–34.
Article
Google Scholar
Landy, D.C., M.A. Brinich, M.A. Colten, E.J. Horn, S.F. Terry, and R.R. Sharp. 2012. How disease advocacy organizations participate in clinical research: A survey of genetic organizations. Genetics in Medicine 14(2): 223–228.
Article
Google Scholar
Lowrance, W.W., and F.S. Collins. 2007. Identifiability in genomic research. Science 317: 600–602.
Article
Google Scholar
Luhmann, N. 2000. Familiarity, confidence, trust: Problems and alternatives. In Trust: Making and breaking cooperative relations, ed. D. Gambetta, 94–107. Oxford: Oxford University Press.
Google Scholar
Lunshof, J.E., R. Chadwick, D.B. Vorhaus, and G.M. Church. 2008. From privacy to open consent. Nature Reviews Genetics 9(5): 406–411.
Article
Google Scholar
McGuire, A.L., and L.M. Beskow. 2010. Informed consent in genomics and genetic research. Annual Review of Genomics and Human Genetics 11: 361–381.
Article
Google Scholar
Mello, M.M., and L.E. Wolf. 2010. The Havasupai Indian Tribe case—Lessons for research involving stored biologic samples. New England Journal of Medicine 363: 204–207.
Article
Google Scholar
Mintrom, M., and R. Bollard. 2009. Governing controversial research Lessons from stem cell research. Policy and Society 28: 301–314.
Article
Google Scholar
Murphy, J., J. Scott, D. Kaufman, G. Geller, L. LeRoy, and K. Hudson. 2008. Public expectations for return of results from large-cohort genetic research. The American Journal of Bioethics 8(11): 36–43.
Article
Google Scholar
Murphy, J., M.S. Scott, D. Kaufman, G. Geller, L. LeRoy, and K. Hudson. 2009. Public perspectives on informed consent for biobanking. Health Policy and Ethics 99(12): 2128–2134.
Google Scholar
O’Doherty, K., and M. Burgess. 2009. Engaging the public on biobanks: Outcomes of the BC Biobank Deliberation. Public Health Genomics 12(4): 203–215.
Article
Google Scholar
O’Doherty, K.C., and 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.
Article
Google Scholar
O’Doherty, K.C., M.M. Burgess, K. Edwards, R.P. Gallagher, A.K. Hawkins, J. Kaye, V. McCaffrey, and D.E. Winickoff. 2011. From consent to institutions: Designing adaptive governance for genomic biobanks. Social Science and Medicine 73: 367–374.
Article
Google Scholar
Ormond, K.E., A.L. Cirino, I.B. Helenowski, R.L. Chisholm, and W.A. Wolf. 2009. Assessing the understanding of biobank participants. American Journal of American Genetics A 149A(2): 188–198.
Article
Google Scholar
Parry, S. 2003. The politics of cloning: Mapping the rhetorical convergence of embryos and stem cells in parliamentary debates. New Genetics and Society 22(2): 177–200.
Article
Google Scholar
Parry, S. 2006. (Re)constructing embryos in stem cell research: Exploring the meaning of embryos for people involved in fertility treatments. Social Science and Medicine 62(10): 2349–2359.
Article
Google Scholar
Provoost, V., G. Pennings, P. De Sutter, J. Gerris, A. Van del Velde, and M. Dhont. 2010. Reflections by patients who undergo IVF on the use of their supernumerary embryos for science. Reproductive BioMedicine Online 20: 880–891.
Article
Google Scholar
Rothstein, M.A., and M.R. Anderlik. 2001. What is genetic discrimination, and when and how can it be prevented? Genetics and Medicine 3: 354–358.
Article
Google Scholar
Steinsbekk, K.S., B.K. Myskja, and B. Solberg. 2013. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics 21: 897–902.
Article
Google Scholar
Stem Cell Network. 2009. What are Stem Cells. Retrieved 6 October, 2014 from http://www.stemcellnetwork.ca/index.php?page=what-are-stem-cells&hl=eng.
Thompson, C. 2014. Good science: The ethical choreography of stem cell research. Cambridge: MIT Press.
Google Scholar
Waldby, C., and K. Carrol. 2012. Egg donation for stem cell research: Ideas of surplus and deficit in Australian IVF patients’ and reproductive donors’ accounts. Sociology of Health & Illness 34(4): 513–528.
Article
Google Scholar
Winickoff, D. 2009. From benefit sharing to power sharing: Partnership governance in population genomics research. In Principles and practice in biobank governance, ed. J. Kaye, and M. Stranger, 53–66. Farnham: Ashgate.
Google Scholar
Wolf, S., Lawrenz, F., Nelson, C., Kahn, J., Cho, M., Wright-Clayton, E.,…Wilfond, B.S. 2008. Managing incidental findings in human subjects research: Analysis and recommendations. Journal of Law, Medicine & Ethics 36(2): 219–211.