REFERENCES
- Aalto-Setälä , K. , Conklin , B. R. and Lo , B. 2009 . Obtaining consent for future research with induced pluripotent cells: Opportunities and challenges . PLoS. Biology , 7 : e42
- Assisted Human Reproduction (AHR) Act, S.C., 2004, c. 2. (2004). Source: Department of Justice, Canada. http://laws-lois.justice.gc.ca/PDF/A-13.4.pdf (http://laws-lois.justice.gc.ca/PDF/A-13.4.pdf) (Accessed: 5 June 2011 ).
- AHR (s. 8, Consent) Regulations, SOR/2007-137. (2007). Source: CanLII. http://www.canlii.org/en/ca/laws/regu/sor-2007-137/latest/sor-2007-137.html (http://www.canlii.org/en/ca/laws/regu/sor-2007-137/latest/sor-2007-137.html) (Accessed: 5 June 2011 ).
- AHR Canada. (2011). Consent to Use Regulations: Frequently Asked Questions. Source: Assisted Human Reproduction Canada. http://www.ahrc-pac.gc.ca/v2/faq/consentFAQ-consentementFAQ-eng.php#q2 (http://www.ahrc-pac.gc.ca/v2/faq/consentFAQ-consentementFAQ-eng.php#q2) (Accessed: 5 June 2011 ).
- Allen , M. D. 2004 . Commercial tissue repositories: HIPAA raises sponsors' fears . IRB , 26 ( 5 ) : 9 – 11 .
- American Society for Reproductive Medicine . 2002 . Donating spare embryos for embryonic stem-cell research . Fertility and Sterility , 78 : 957 – 960 .
- Baker , M. 2008 . Consent issues restrict stem-cell use . Nature , 454 : 556
- Bangsbøll , S. , Pinborg , A. , Yding , A. C. and Nyboe , A. A. 2004 . Patients' attitudes towards donation of surplus cryopreserved embryos for treatment or research . Human Reproduction , 19 : 2415 – 2419 .
- Bankowski , B. J. , Lyerly , A. D. , Faden , R. R. and Wallach , E. E. 2005 . The social implications of embryo cryopreservation . Fertility and Sterility , 84 ( 4 ) : 823 – 832 .
- Baylis , F. 2009 . For love or money? The saga of Korean women who provided eggs for embryonic stem cell research . Theoretical Medicine and Bioethics , 30 : 385 – 396 .
- Baylis , F. , Beagan , B. , Johnston , J. and Ram , N. 2003 . Cryopreserved human embryos in Canada and their availability for research . Canadian Journal of Obstetric Gynecology , 25 : 1026 – 1031 .
- Baylis , F. and Herder , M. 2009a . Policy design for human embryo research in Canada: A history (part 1 of 2) . Journal of Bioethical Inquiry , 6 : 109 – 122 .
- Baylis , F. and Herder , M. 2009b . Policy design for human embryo research in Canada: An analysis (part 2 of 2) . Journal of Bioethical Inquiry , 6 : 351 – 365 .
- Baylis , F. and McInnes , C. 2007 . Women at risk: Embryonic and fetal stem cell research in Canada . McGill Journal of Law and Health , 1 : 53 – 68 .
- Baylis , F. and Ram , N. 2005 . Eligibility of cryopreserved human embryos for stem cell research in Canada . Canadian Journal of Obstetric Gynecology , 27 : 949 – 955 .
- Baylis , F. and Krahn , T. 2009 . The trouble with embryos . Science Studies , 22 : 31 – 54 .
- Berg , J. W. and Appelbaum , P. S. 2001 . Informed Consent: Legal Theory and Clinical Practice , Oxford : Oxford University Press .
- Bhutta , Z. A. 2004 . Beyond informed consent . Bulletin of the World Health Organization , 82 : 771 – 778 .
- Bjuresten , K. and Hovatta , O. 2003 . Donation of embryos for stem cell research–how many couples consent? . Human Reproduction , 18 : 1353 – 1355 .
- Brown , S. 2007 . China challenges the West in stem-cell research . The Chronicle of Higher Education , 53 : A15
- Canada, and Baird, P. (1993). The Royal Commission on New Reproductive Technologies. Source: Commissions of Inquiry. http://epe.lac-bac.gc.ca/100/200/301/pco-bcp/commissions-ef/baird1993-eng/baird1993-eng.htm (http://epe.lac-bac.gc.ca/100/200/301/pco-bcp/commissions-ef/baird1993-eng/baird1993-eng.htm) (Accessed: 5 June 2011 ).
- Canada, and Royal Commission on New Reproductive Technologies . 1993 . Proceed With Care: Final Report of the Royal Commission on New Reproductive Technologies. Summary and Highlights , Ottawa, ON : Minister of Supply and Services Canada .
- Caulfield , T. , Ogbogu , U. and Isasi , R. M. 2007 . Informed consent in embryonic stem cell research: Are we following basic principles? . Canadian Medical Association Journal , 176 : 1722 – 1725 .
- Canadian Institutes of Health Research. (CIHR). (2002a). Ethics in CIHR: Human Pluripotent Stem Cell Research: Recommendations for CIHR-Funded Research. http://www.cihrirsc.gc.ca/publications/ethics/stem_cell/stem_cell_recommendations_e.shtml (http://www.cihrirsc.gc.ca/publications/ethics/stem_cell/stem_cell_recommendations_e.shtml) (Accessed: 19 February 2003 ).
- Canadian Institutes of Health Research. (CIHR). (2002b). Human Pluripotent Stem Cell Research: Guidelines for CIHR-Funded Research (effective March 4, 2002). http://www.cihr-irsc.gc.ca/e/1487.html (http://www.cihr-irsc.gc.ca/e/1487.html) (Accessed: 5 June 2011 ).
- Canadian Institutes of Health Research. (CIHR). (2002c). Human Pluripotent Stem Cell Research: Recommendations for CIHR-Funded Research. Report of the ad hoc Working Group on Stem Cell Research. http://www.cihr-irsc.gc.ca/e/1489.html (http://www.cihr-irsc.gc.ca/e/1489.html) (Accessed: 5 June 2011 ).
- Canadian Institutes of Health Research. (CIHR). (2007). Updated Guidelines for Human Pluripotent Stem Cell Research, June 29, 2007. http://www.cihr-irsc.gc.ca/e/34460.html (http://www.cihr-irsc.gc.ca/e/34460.html) (Accessed: 5 June 2011 ).
- Canadian Institutes of Health Research. (CIHR). (2010a). Members of Governing Council and Minutes of GC Meeting. http://www.cihr-irsc.gc.ca/e/6953.html (http://www.cihr-irsc.gc.ca/e/6953.html) (Accessed: 5 June 2011 ).
- Canadian Institutes of Health Research. (CIHR). (2010b). Updated Guidelines for Human Pluripotent Stem Cell Research, June 30, 2010. http://www.cihr-irsc.gc.ca/e/42071.html (http://www.cihr-irsc.gc.ca/e/42071.html) (Accessed: 5 June 2011 ).
- Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. (CIHR, NSERC, and SSHRC). (1998). Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, 1998 (with 2000, 2002, 2005 amendments). 1st edition. http://www.ethics.gc.ca/eng/archives/tcps-eptc/Default/ (http://www.ethics.gc.ca/eng/archives/tcps-eptc/Default/) (Accessed: 5 June 2011 ).
- Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. (CIHR, NSERC, and SSHRC). (2010). Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. 2nd edition. http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/Default/ (http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/Default/) (Accessed: 5 June 2011 ).
- Clayton , E. W. 2004 . So what are we going to do about research using clinical information and samples? . IRB , 26 ( 6 ) : 14 – 15 .
- Cohen , C. B. 2009 . Ethical and policy issues surrounding the donation of cryopreserved and fresh embryos for human embryonic stem cell research . Stem Cell Reviews , 5 : 116 – 122 .
- Cowan , C. A. , Klimanskaya , I. , McMahon , J. , Atienza , J. , Witmyer , J. , Zucker , J. P. , Wang , S. , Morton , C. C. , McMahon , A. P. , Powers , D. and Melton , D. A. 2004 . Derivation of embryonic stem-cell lines from human blastocysts . New England Journal of Medicine , 350 : 1353 – 1356 .
- de Lacey , S. 2005 . Parent identity and ‘virtual’ children: Why patients discard rather than donate unused embryos . Human Reproduction , 20 : 1661 – 1669 .
- de Lacey , S. 2007 . Patients' attitudes to their embryos and their destiny: Social conditioning? . Best Practice and Research: Clinical Obstetrics and Gynaecology , 21 : 101 – 112 .
- Donnelly, L. (2009). “Human tissues can be taken for human-animal embryo experiments without consent.” Telegraph (London), 12 September. http://www.telegraph.co.uk/science/science-news/6179405/Human-tissue-can-be-taken-for-human-animal-embryo-experiements-without-consent.html (http://www.telegraph.co.uk/science/science-news/6179405/Human-tissue-can-be-taken-for-human-animal-embryo-experiements-without-consent.html) (Accessed: 5 June 2011 ).
- Elger , B. S. and Caplan , A. L. 2006 . Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework . EMBO Reports , 7 : 661 – 666 .
- Ethics Committee of the American Society for Reproductive Medicine . 2009 . Donating spare embryos for stem cell research . Fertility and Sterility , 91 : 667 – 670 .
- Evans , B. J. and Meslin , E. M. 2006 . Encouraging translational research through harmonization of FDA and common rule informed consent requirements for research with banked specimens . Journal of Legal Medicine , 27 : 119 – 166 .
- Furness , P. N. 2006 . One-time general consent for research on biological samples: Good idea, but will it happen? . BMJ , 332 : 665
- Fuscaldo , G. , Russell , S. and Gillam , L. 2007 . How to facilitate decisions about surplus embryos: Patients' views . Human Reproduction , 22 : 3129 – 3138 .
- Glasner , P. 2005 . Banking on Immortality? Exploring the stem cell supply chain from embryo to therapeutic application . Current Sociology , 53 : 355 – 366 .
- Greely , H. T. 2007 . The uneasy ethical and legal underpinnings of large-scale genomic biobanks . Annual Review of Genomics and Human Genetics , 8 : 343 – 364 .
- Hakimian , R. and Korn , D. 2004 . Ownership and use of tissue specimens for research . JAMA , 292 : 2500 – 2505 .
- Hammarberg , K. and Tinney , L. 2006 . Deciding the fate of supernumerary frozen embryos: A survey of couples' decisions and the factors influencing their choice . Fertility and Sterility , 86 : 86 – 91 .
- Hansson , M. G. , Dillner , J. , Bartram , C. R. , Carlson , J. A. and Helgesson , G. 2006 . Should donors be allowed to give broad consent to future biobank research? . Lancet Oncology , 7 : 266 – 269 .
- Hug , K. 2005 . Sources of human embryos for stem cell research: Ethical problems and their possible solutions . Medicina (Kaunas) , 41 : 1002 – 1010 .
- Hug , K. 2008 . Motivation to donate or not donate surplus embryos for stem-cell research: Literature review . Fertility and Sterility , 89 : 263 – 277 .
- International Society for Stem Cell Research (ISSCR). (2006). Guidelines for the Conduct of Human Embryonic Stem Cell Research. Version I: December 21, 2006. http://www.isscr.org/hESC_Guidelines_Resources.htm (http://www.isscr.org/hESC_Guidelines_Resources.htm) (Accessed: 5 June 2011 ).
- International Society for Stem Cell Research (ISCCR). (2011). ISCCR Sample Informed Consent Documents: Embryo Donation for Stem Cell Research; Created for Fertility Purposes and in Excess of Clinical Need. http://www.isscr.org/hESC_Guidelines_Resources.htm (http://www.isscr.org/hESC_Guidelines_Resources.htm) (Accessed: 5 June 2011 ).
- ISSCR Task Force. (2006). Draft Guidelines for the Conduct of Human Embryonic Stem Cell Research - Draft 6-3–06 Presented to the ISSCR Membership for Comment. Source: International Society for Stem Cell Research. http://www.hfea.gov.uk/docs/ELC_Annex_A_eggs_for_research_July06.pdf (http://www.hfea.gov.uk/docs/ELC_Annex_A_eggs_for_research_July06.pdf) (Accessed: 5 June 2011 ).
- Jones , D. A. and MacKellar , C. 2009 . Consent for biobank tissue in somatic-cell nuclear transfer . The Lancet , 374 : 861 – 863 .
- Klock , S. C. , Sheinin , S. and Kazer , R. R. 2001 . The disposition of unused frozen embryos . New England Journal of Medicine , 345 : 69 – 70 .
- Knoppers , B. M. 2005 . Biobanking: International norms . The Journal of Law, Medicine, & Ethics , 33 : 7 – 14 .
- Kuczewski , M. G. 1996 . Reconceiving the family. The process of consent in medical decisionmaking . The Hastings Center Report , 26 : 30 – 37 .
- Law Reform Commission of Canada . 1992 . Medically Assisted Procreation. Working Paper 65 , Ottawa, ON : Minister of Supply and Services Canada .
- Leshner, A. I. (2009). Re: Request for Public Comment on NIH Guidelines for Human Stem Cell Research. Source: AAAS. http://www.aaas.org/spp/cstc/09_05%20AAAS%20Comment%20on%20NIH%20Stem%20Cell%20Guidelines.pdf (http://www.aaas.org/spp/cstc/09_05%20AAAS%20Comment%20on%20NIH%20Stem%20Cell%20Guidelines.pdf) (Accessed: 5 June 2011 ).
- Lo , B. , Parham , L. , Broom , C. , Cedars , M. , Gates , E. , Giudice , L. , Halme , D. G. , Hershon , W. , Kriegstein , A. , y , Kwok, P. , Oberman , M. , Roberts , C. and Wagner , R. 2009 . Importing human pluripotent stem cell lines derived at another institution: Tailoring review to ethical concerns . Cell Stem Cell , 4 : 115 – 123 .
- Lyerly , A. D. and Faden , R. R. 2007 . Embryonic stem cells. Willingness to donate frozen embryos for stem cell research . Science , 317 : 46 – 47 .
- Lyerly , A. D. , Steinhauser , K. , Namey , E. , Tulsky , J. A. , Cook-Deegan , R. , Sugarman , J. , Walmer , D. , Faden , R. and Wallach , E. 2006 . Factors that affect infertility patients' decisions about disposition of frozen embryos . Ferility and Sterility , 85 : 1623 – 1630 .
- Massey, J. B. (2010). Donor Attitudes Regarding Embryo Donation. Source: CNY Fertility Center. http://cnyfertility.com/2010/01/19/donor-attitudes-regarding-embryo-donation (http://cnyfertility.com/2010/01/19/donor-attitudes-regarding-embryo-donation) (Accessed: 5 June 2011 ).
- Mathews , D. J. H. , Donovan , P. , Harris , J. , Lovell-Badge , R. , Savulescu , J. and Faden , R. 2006 . Science and law—Integrity in international stem cell research collaborations . Science , 313 : 921 – 922 .
- McDonald , M. 2001 . Canadian governance of health research involving human subjects: Is anybody minding the store? . Health Law Journal , 9 : 1 – 21 .
- McDonald , M. 2000 . The Governance of Human Research Involving Human Subjects , Ottawa, ON : The Law Commission of Canada .
- McMahon , C. , Gibson , F. , Cohen , J. , Leslie , G. , Tennant , C. and Saunders , D. 2000 . Mothers conceiving through in vitro fertilization: Siblings, setbacks, and embryo dilemmas after five years . Reproductive Technologies , 10 : 131 – 135 .
- McMahon , C. A. , Gibson , F. L. , Leslie , G. I. , Saunders , D. M. , Porter , K. A. and Tennant , C. C. 2003 . Embryo donation for medical research: Attitudes and concerns of potential donors . Human Reproduction , 18 : 871 – 877 .
- Meisel , A. and Kuczewski , M. 1996 . Legal and ethical myths about informed consent . Archives of Internal Medicine , 156 : 2521 – 2526 .
- Nachtigall , R. D. , Becker , G. , Friese , C. , Butler , A. and MacDougall , K. 2005 . Parents' conceptualization of their frozen embryos complicates the disposition decision . Fertility and Sterility , 84 : 431 – 434 .
- National Research Council (United States), and Human Embryonic Stem Cell Research Advisory Committee . 2007 . The National Academies' Guidelines for Human Embryonic Stem Cell Research , Washington, DC : National Academies Press .
- Nelson , E. , Mykitiuk , R. , Nisker , J. , Christilaw , J. , Corey , J. A. , Heaman , M. , Lippman , A. , Rodgers , S. , Shapiro , J. and Sherwin , S. 2008 . Informed consent to donate embryos for research purposes . Canadian Journal of Obstetric Gynecology , 30 : 824 – 836 .
- Nelson , E. 2002 . “ The fundamentals of consent ” . In Canadian Health Law and Policy , Edited by: Downie , J. G. , Caulfield , T. A. and Flood , C. M. 111 – 128 . Markham, ON : Butterworths .
- Nelson , E. 2008 . Consent to embryo donation for human embryonic stem cell research . Health Law Review , 16 : 5 – 26 .
- Nisker , J. and White , A. 2005 . The CMA Code of Ethics and the donation of fresh embryos for stem cell research . Canadian Medical Association Journal , 173 : 621 – 622 .
- Nisker , J. , White , A. , Tekpetey , F. and Feyles , V. 2006 . Development and investigation of a free and informed choice process for embryo donation to stem cell research in Canada . Canadian Journal of Obstetric Gynecology , 28 : 903 – 908 .
- Nuffield Council on Bioethics. (2000). Stem Cell Therapy: The Ethical Issues: A Discussion Paper. Source: Nuffield Council on Bioethics. http://www.nuffieldbioethics.org/sites/default/files/Stem%20cell%20therapy%20discussion%20paper.pdf (http://www.nuffieldbioethics.org/sites/default/files/Stem%20cell%20therapy%20discussion%20paper.pdf) (Accessed: 5 June 2011 ).
- Québec Superior Court. (2011). Weiss v. Solomon (1989), 48 CCLT 280 (Que. Sup. Ct.). Source: http://www.tribunaux.qc.ca/mjq_en/csuperieure/decisions-cs_en.htm (http://www.tribunaux.qc.ca/mjq_en/csuperieure/decisions-cs_en.htm) (Accessed: 5 June 2011 ).
- Régnier , M.-H. and Knoppers , B. M. 2003 . Spare embryos and stem cell research: Consent issues . Health Law Journal , 11 : 13 – 22 .
- Rothstein , M. A. 2005 . Expanding the ethical analysis of biobanks . Journal of Law, Medicine, & Ethics , 33 : 89 – 101 .
- Saskatchewan Court of Appeal. (1965). Halushka v. University of Saskatchewan, 1965, 53 DLR (2d) 436, WWR 608 (Sask. C.A.). http://www.gduval.com/Halushka%20v.%20University%20of%20Saskatchewan%201965%20SCA.pdf (http://www.gduval.com/Halushka%20v.%20University%20of%20Saskatchewan%201965%20SCA.pdf) (Accessed: 5 June 2011 ).
- Shamoo , A. E. and Resnik , D. B. 2009 . Responsible Conduct of Research , Oxford : Oxford University Press .
- Stein, R. (2009). “Blood samples raise questions of privacy: Some samples are stored and used for research without parents' consent.” Washington Post, 30 June. http://www.washingtonpost.com/wp-dyn/content/article/2009/06/29/AR2009062903118.html (http://www.washingtonpost.com/wp-dyn/content/article/2009/06/29/AR2009062903118.html) (Accessed: 5 June 2011 ).
- Streiffer , R. 2008a . Informed consent and federal funding for stem cell research . The Hastings Center Report , 38 : 40 – 47 .
- Streiffer , R. 2008b . Reply to Robertson, Cohen and Hyun - Big bang theory: More reasons to scrap Bush's stem cell policy . The Hastings Center Report , 38 : 6
- Streiffer, R. (2009a). Informed Consent and the NIH Registered Cell Lines. Source: Advancing the Field: Institutional Approaches Supporting Ethics in Stem Cell Research.Workshop summary, San Francisco, CA, June 30 - July 1. http://www.cirm.ca.gov/sites/default/files/PDFs/Standards/Summary_Report_7_20_09_compiled.pdf (http://www.cirm.ca.gov/sites/default/files/PDFs/Standards/Summary_Report_7_20_09_compiled.pdf) (Accessed: 5 June 2011 ).
- Streiffer, R. (2009b). Obama's Guidelines on Human Stem Cell Research: Expanding Funding, Improving Oversight. Source: Bioethics Forum. http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=3736 (http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=3736) (Accessed: 5 June 2011 ).
- Streiffer , R. 2010a . Chimeras, moral status, and public policy: Implications of the abortion debate for public policy on human/nonhuman chimera research . Journal of Law, Medicine, & Ethics , 38 : 238 – 250 .
- Streiffer, R. (2010b). Ethically Evaluating Research Involving the Engraftment of Human Neural Stem Cells in Nonhuman Primates. Source: Max-Planck-Institute for Molecular Biomedicine Institute for Medical Ethics, History and Philosophy of Medicine, Münster Germany, October 20, 2010. http://www.pdfdownload.org/pdf2html/view_online.php?url=https%3A%2F%2Fmywebspace.wisc.edu%2Frstreiffer%2Fweb%2Fmaterials%2FStreiffer%2520-%2520101018%2520Max%2520Planck%2520Neural%2520Stem%2520Cells%2520into%2520NHPs.pdf (http://www.pdfdownload.org/pdf2html/view_online.php?url=https%3A%2F%2Fmywebspace.wisc.edu%2Frstreiffer%2Fweb%2Fmaterials%2FStreiffer%2520-%2520101018%2520Max%2520Planck%2520Neural%2520Stem%2520Cells%2520into%2520NHPs.pdf) (Accessed: 5 June 2011 ).
- Sugarman , J. and Siegel , A. 2008 . How to determine whether existing human embryonic stem cell lines can be used ethically . Cell Stem Cell , 3 : 238 – 239 .
- Supreme Court of Canada. (2001). Cooper v. Hobart, [2001] 3 S.C.R. 537, 2001 SCC 79. Source: Judgments of the Supreme Court of Canada. http://scc.lexum.org/en/2001/2001scc79/2001scc79.html (http://scc.lexum.org/en/2001/2001scc79/2001scc79.html) (Accessed: 5 June 2011 ).
- Supreme Court of Canada. (2010). Reference re Assisted Human Reproduction Act, 2010 SCC 61. Source: Judgments of the Supreme Court of Canada. http://scc.lexum.org/en/2010/2010scc61/2010scc61.html (http://scc.lexum.org/en/2010/2010scc61/2010scc61.html) (Accessed: 5 June 2011 ).
- United States and National Bioethics Advisory Commission. (1999a). Ethical Issues in Human Stem Cell Research. Volume I: Report and Recommendations of the National Bioethics Advisory Commission. Source: Bioethics.gov—The Presidential Commission for the Study of Bioethical Issues. http://bioethics.georgetown.edu/pcbe/reports/past_commissions/nbac_stemcell1.pdf (http://bioethics.georgetown.edu/pcbe/reports/past_commissions/nbac_stemcell1.pdf) (Accessed: 5 June 2011 ).
- United States and National Bioethics Advisory Commission . 1999b . Ethical Issues in Human Stem Cell Research. Volume III: Religious Perspectives , Rockville, MD : The Commission .
- Van Voorhis , B. J. , Grinstead , D. M. , Sparks , A. E. T. , Gerard , J. L. and Weir , R. F. 1999 . Establishment of a successful donor embryo program: Medical, ethical, and policy issues . Fertility and Sterility , 71 : 604 – 608 .
- Veatch , R. M. 1995 . Abandoning informed consent . The Hastings Center Report , 25 : 5 – 12 .
- Vogel , G. and Holden , C. 2008 . Stem cells—Ethics questions add to concerns about NIH lines . Science , 321 : 756 – 757 .
- Wendler , D. 2006 . One-time general consent for research on biological samples . BMJ , 332 : 544 – 547 .