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Ethically sustainable governance in the biobanking of eggs and embryos for research

  • Biobanking Eggs and Embryos for Research
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Abstract

Biobanking of human tissues is associated with a range of ethical, legal, and social (ELS) challenges. These include difficulties in operationalising informed consent protocols, protecting donors’ privacy, managing the return of incidental findings, conceptualising ownership of tissues, and benefit sharing. Though largely unresolved, these challenges are well documented and debated in academic literature. One common response to the ELS challenges of biobanks is a call for strong and independent governance of biobanks. Theorists who argue along these lines suggest that since fully informed consent to a single research project is often not feasible, research participants should be given the additional protection of being allowed to consent to the governance framework of the biobank. Such governance therefore needs to be transparent and ethically sustainable. In this paper we review the governance challenges of establishing and maintaining human tissue biobanks. We then discuss how the creation of a biobank for eggs and embryos, in particular, may introduce additional or unique challenges beyond those presented by the biobanking of other human tissues. Following previous work on biobank governance, we argue that ethically sustainable governance needs to be participatory, adaptive, and trustworthy.

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Notes

  1. Some versions of open consent may also involve participants agreeing to any uses within a stated scope of research.

  2. We note here recent advances that allow genetic material from more than `two individuals to be used in the creation of embryos.

  3. For further discussion of the commodification of biological materials see Dickenson (2007), and Thompson (2014).

  4. The fourth principle of ‘fit’ outlined by O’Doherty et al. (2011) is implicit in this discussion, since it pertains to consideration of a specific type of biobank.

  5. However, as outlined above, Canadian regulations may prohibit this.

  6. See http://www.geneticalliance.org/programs/biotrust/peer.

References

  • 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.

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Authors and Affiliations

  1. Department of Psychology, University of Guelph, Guelph, ON, N1G 2W1, Canada

    Karla Stroud & Kieran C. O’Doherty

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  1. Karla Stroud
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  2. Kieran C. O’Doherty
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Correspondence to Kieran C. O’Doherty.

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Stroud, K., O’Doherty, K.C. Ethically sustainable governance in the biobanking of eggs and embryos for research. Monash Bioeth. Rev. 33, 277–294 (2015). https://doi.org/10.1007/s40592-015-0047-6

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