Abstract
The doctrine of informed consent is now recognized worldwide through several international guidelines and normative instruments. Based on respect for the dignity and autonomy of patients and research participants, it has been the subject of numerous publications for quite some time. In a globalized world where a variety of spiritualities and cultures are in close contact, the subject is discussed at length with respect to how it can be applied in all contexts, particularly in the context resulting from recent scientific and technological developments, especially in genetics and genomics. More specifically, the meaning and scope of the word “informed” is questioned more and more depending on the individual, group, or country to which it applies. This chapter examines the various challenges raised in the literature related to the use of this concept in a globalized world. It postulates that the answers to questions are not definitive, and that each possible solution must be based on the dialogue between all involved and on the respect and autonomy of the individual, even if the decision-making process may vary depending on the context in which research and medicine are practiced.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Agich, G. J. (1998). Human experimentation and clinical consent. In J. F. Monagle (Ed.), Health care ethics: Critical issues for the 21st century. Gaithersburg, MD: Aspen.
Andorno, R. (2004). The right not to know: An autonomy based approach. Journal of Medical Ethics, 30, 435–440.
Benatar, S. R. (2002). Reflection and recommendations on research ethics in developing countries. Social Science & Medicine, 54, 1131–1141.
Canadian Medical Protective Association. (2006). Consent: A guide for canadian physicians. Retrieved August 2012, from https://www.cmpa-acpm.ca/cmpapd04/docs/resource_files/ml_guides/consent_guide/pdf/com_consent-e.pdf
Caulfield, T. R., Upshur, E. G., & Daar, A. (2003). DNA databanks and consent: A suggested policy option involving an authorization model. BMC Medical Ethics, 4, 1.
Chadwich, R. (1997). The philosophy of the right to know and the right not to know. In M. L. Chadwich, M. L. Chadwich, & D. Shickle (Eds.), The right to know and the right not to know. Aldershot/Brookfield, VT: Avebury.
Collège des médecins du Québec. (2007). Guide de pratique en soins de longue durée. Retrieved April 2012, from http://www.cmq.org/fr/Medias/Profil/Commun/AproposOrdre/Publications/~/media/Files/Guides/Guide%20soins%20longue%20duree%202007.ashx?41215
Fan, R., & Tao, J. (2004). Consent to medical treatments: The complex interplay of patients, families and physicians. The Journal of Medicine and Philosophy, 29(2), 139–148.
Health Canada. (2008). Implementation Guide to Advance Care Planning in Canada: A Case Study of Two Health Authorities. Retrieved April 2012, from http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/2008-acp-guide-pps/index-eng.php
Health Literacy in Canada. (2007). Initial results from the International Adult Literacy and Skills Survey, Ottawa.
International Bioethics Committee. (2011). Report of IBC on the Principle of Respect for Human Vulnerability and Personal Integrity, Paris, SHS/EST/CIB-17/10/CONF.501/2 Rev 2
Jefford, M., & Moore, R. (2008). Improvement of informed consent and the quality consent documents. The Lancet Oncology, 9(5), 485–493. Retrieved April 2012, from http://oncology.thelancet.com.
Katz, J. (1984). The Silent world of Doctor and Physician. New York: The Free Press.
Kegly, J. A. K. (2004). Challenges to informed consent. EMBO Reports, 5(9), 832–836.
Khabir, A. (2001). A Drug Company sued over research trial in Nigeria. Lancet, 358(9284), 815.
Knoppers, B. M., & Chadwick, R. (2006). Human genetic research: Emerging trends in ethics. Focus, The Journal of Lifelong Learning in Psychiatry, IV(3), 416–422.
Luther, L., & Lemmens, T. (2012). Human genetic data banks: From consent to commercialization- an overview of current concerns and conundrums. Biotechnology, XII, 183–217.
Marshall, P. A. (2007). Ethical challenges in study design and informed consent for health research in resource-poor settings. In Special Topics in Social, Economic and Behavioural (SEB) (Research report series; No. 5). Geneva: WHO.
Molyneux, C. S., et al. (2005). Even if they ask you to stand by a tree all day, you will have to do it (laughter)…! Community voices on the notion and practice of informed consent for biomedical research in developing countries. Social Science & Medicine, 61, 443–454.
NHMRC. (2011). Guidance for the National Approach to Single Ethical Review. Australia: NHMRC. Retrieved August 2012, from www.nhmrc.gov.au
Salgo v. Leland Stanford Jr. University Board of Trustees, (1957). 317P. 2d 170 (Cal Dist. Ct. App 1957, Retrieved April 2012, from http://www.stanford.edu/group/psylawseminar/Salgo.htm
Schachter, M., & Fins, J. J. (2008). Informed consent revisited: A doctrine in the service of cancer care. The Oncologist, 13(10), 1109–1113. Retrieved August 2012, from http://theoncologist.alphamedpress.org/content/13/10/1109.full.pdf+html.
TCPC. (2010). Canadian Institute of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. In Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS). Retrieved November 2012, from http://pre.ethics.gc.ca/eng/index/
UNESCO. (2005). Universal Declaration on Bioethics and Human Rights, Paris.
UNESCO. (2009). Report of the International Bioethics Committee of UNESCO (IBC on Consent). Paris.
Wahl, J. (2006). Advance Care Planning – The Legal Issues, October 2006. Retrieved April 2012, from http://thehealthline.ca/palliativecare/index.aspx?id=80
Wiwchar, D. (2004). Nuu-chah-nulth blood returns to west coast. Ha-Shilth-Sa, 31(25), 1–4.
World Medical Association. (2008). Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. In 59th WMA General Assembly, Seoul, October 2008. Retrieved August 2012, from http://www.wma.net/en/30publications/10policies/b3/17c.pdf
Zawati, M. H., Van Ness, B., & Knoppers, B. M. (2011). Incidental findings in genomic research: A review of international norms. GEN, 9(1), 1–8. Retrieved August 2012, from www.humgen.org/genedit.
Acknowledgments
The Canadian Commission for UNESCO generously contributed to the translation of this chapter.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2014 Springer Science+Business Media Dordrecht
About this entry
Cite this entry
Stanton-Jean, M., Doucet, H., Leroux, T. (2014). Informed Consent. In: ten Have, H., Gordijn, B. (eds) Handbook of Global Bioethics. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-2512-6_117
Download citation
DOI: https://doi.org/10.1007/978-94-007-2512-6_117
Published:
Publisher Name: Springer, Dordrecht
Print ISBN: 978-94-007-2511-9
Online ISBN: 978-94-007-2512-6
eBook Packages: Humanities, Social Sciences and Law