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Human embryos and eggs: from long-term storage to biobanking

  • Biobanking Eggs and Embryos for Research
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Abstract

Genetic relatedness poses significant challenges to traditional practices of medical ethics as concerns the biobanking of human biological samples. In this paper, we first outline the ethical challenges to informed consent and confidentiality as these apply to human biobanks, irrespective of the type of tissue being stored. We argue that the shared nature of genetic information has clear implications for informed consent, and the identifying nature of biological samples and information has clear implications for promises of confidentiality. Next, with regard to the special case of biobanking human embryos and eggs, we consider issues arising from: first, the type of tissues being stored; second, the use to which these tissues are put; and third, how this plays out given the shared and identifying nature of these tissues. Specifically, we examine the differences between human bodily tissues and human reproductive tissues focusing on the assumed potential of the reproductive tissues and on the possible greater emotional attachment to these tissues because of their real and imagined kinship. For some donors there may be a sense of family connection with embryos and eggs they once thought of as ‘children-in-waiting’. Finally, we conclude by considering the implications for ethical practice.

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Notes

  1. In 2003, Hoffman and colleagues estimated there were approximately 400,000 embryos in storage in the United States (1068). That same year, Baylis and colleagues estimated the Canadian total at 15,615 (2003, p. 1026). The most recent estimate for the United States is 1.4 million human embryos in storage (see, Lomax and Trounson 2013). While this estimate is flawed (see Snow et al. 2015), there is no doubt that the total is likely well over a million. There is no more recent estimate for Canada.

  2. The European Society of Human Reproduction and Embryology reports an average of 1.5 million ART cycles per year worldwide. (See https://www.eshre.eu/guidelines-and-legal/art-fact-sheet.aspx) Each of these cycles likely results in one or more embryos in storage.

  3. The HFEA in the United Kingdom reports that as at December 2012, there were approximately 18,000 eggs in storage for own use. The usual limit on egg freezing is 10 years. (See www.hfea.gov.uk/46.html).

  4. To be clear, this is a claim about emotional attachment, not a claim about moral status.

  5. UK Biobank had adopted a ‘trust’ model that goes beyond simple broad consent. The Ethics and Governance Council has an on-going remit to (i) ensure that UK Biobank abides by the Ethics and Governance Framework and (ii) monitor UK Biobank’s duties to participants, its relationship with users of the resource, the principles and mechanisms of access, as well as wider duties to society (UKB EGF 2007).

  6. That genetic samples and information are shared and identifying is standard in genetic ethics, for overview of these arguments. See, Widdows (2007, 2009).

  7. Canavan disease is “an incurable recessive genetic disease that results in degeneration of the brain of children born with the condition followed by inevitable death usually between the ages of ten and fifteen” (Marchant 2005, p. 161). The disease is found amongst Ashkenazi Jews and approximately one in 6400 children are born with it (Marshall 2000).

  8. For a discussion of withdrawal in biobanking, see Holm (2011).

  9. Databases that can be used as comparators are not limited to official databases, such as health records. Potentially any database (including commercial databases such as those that map shopping habits) can be used in cross-referring and triangulation.

  10. For instance, see footnote 5 on the governance practices of UK Biobank aimed to address the ethical limits of informed consent, recognizing that ethical issues will arise over time and after the point of initial consent.

  11. In many jurisdictions, individuals are invited to provide a broad consent to embryo research. Within these jurisdictions, some biobanks will streamline the options. For example, RENEW Biobank at Stanford University identifies two specific streams of embryo research (early human development and genetic reprogramming and/or production of cell lines) and donors can contribute to one or both classes of research. See for example, a sample consent form at https://med.stanford.edu/content/dam/sm/hesc/documents/donations/tissue/8-_External_Clinic_Embryo_Cryo_ResearchConsent14.pdf. In other jurisdictions, most notably Canada, broad consent is not an option. Consent regulations require consent to “a specific research project, the goal of which is stated in the consent” (Canada 2007).

  12. Some countries permit the creation of human embryos for research use [for instance, Australia, Singapore and UK allow the creation of research embryos (Hyun 2014, p. 28)]. In these countries it is possible that embryo providers would make a direct contribution to a human embryo biobank, in which case there would be clearer trajectory from the provider’s body to the biobank.

  13. Many cite Moore v. Regents of the University of California as a point of profound change regarding what is ‘waste’ tissue. Before the genetic era, diseased and discarded tissue was res nullius. In the genetic era, all such tissue became potentially valuable. It follows that if donors realise the value of their reproductive tissues, they may be less willing to donate embryos and eggs to a biobank, particularly if donation is to a commercial rather than a public sector biobank.

  14. Interestingly, Camilla distinguishes between a genetic link with one donor and a genetic link with both donors (as the children would not be full siblings to her children). "In this scale, relinquished embryos represent the highest degree of kinship relatedness as they embody the reproductive parental intention of two previous prospective parents and are possibly genetically linked to them and their offspring” (Zanini 2013, p. 104).

  15. Genetic relatedness can be revealed between two genetic-siblings or half-siblings by comparator testing (say of hair) which can be done on-line or by comparison with genetic databases.

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Acknowledgments

Research for this paper was funded, in part, by Canadian Institutes of Health Research Grant No. EOG111389, “A comparative study of assisted human reproduction patients’ views about the donation of eggs and embryos for scientific and clinical research.” As well, it is important to recognize the generous support of the Brocher Foundation in providing FB with a contemplative environment in which to finish revisions to this paper.

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Correspondence to Françoise Baylis.

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Baylis, F., Widdows, H. Human embryos and eggs: from long-term storage to biobanking. Monash Bioeth. Rev. 33, 340–359 (2015). https://doi.org/10.1007/s40592-015-0045-8

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