Abstract
There are instances where the provider of an intervention, such as surgery, has failed to obtain necessary informed consent from the recipient of the intervention. Perhaps the surgeon has failed to warn the patient that she may go into a coma, or even be killed, from the surgery. Sometimes, as a result of this intervention, the recipient cannot give informed consent to researchers for the release of their personal data precisely because of the intervention. If they are in a coma, they cannot be reached. Sometimes, this personal data itself can prove that the provider of the intervention failed to obtain informed consent for the intervention. For example, a personal file may include a consent form that does not include warnings about the risk of falling into a coma from the surgery. Paradoxically, those who cannot give informed consent for the disclosure of their personal data on an intervention may have been especially ill-informed about the repercussions of the intervention. In such instances, should researchers ever use the data and disclose the data in their research? In an attempt to demonstrate when this dilemma may be relevant, and how it may be solved, I will present a real-world case of this dilemma in my own empirical research on refugees who agreed to repatriate to their countries of origin from Israel. I will consider what theories on consent, if any, can help us resolve this dilemma.
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Notes
Questions provided by the Hebrew Immigrant Aid Society (HIAS)
Throughout this paper I will refer to the return as “repatriation” even though it was very likely a case of refoulement. I have chosen this neutral term, as the purpose of this paper is to determine whether data disclosure is justified in cases where we do not know if repatriation was a type of refoulement.
Thanks to an anonymous reviewer for this example.
In theory refugees should perhaps have the right to re-enter a country they were unjustly forced to leave.
References
Arneson RJ (1994) Autonomy and Preference Formation. In: Coleman J, Buchanan A (eds) In harms way: essays in honor of Joel Feinberg. Cambridge University Press, Cambridge
Beauchamp TL, Childress JF (2009) Principles of biomedical ethics, 6th edn. Oxford University Press, Oxford
Bergelson V (2013) Consent to Harm. In: Miller F, Wertheimer A (eds) The ethics of consent: theory and practice. Oxford University Press, Oxford
Berman Y (2011) Until our hearts are completely hardened: Asylum procedures in Israel. Hotline for Migrant Workers
Cantor N (2005) The bane of surrogate decision-making: defining the best interests of never-competent persons. J Legal Med 26(2):155–205
Cohen S (2013) Nudging and informed consent. Am J Bioeth 13(6):3–11
Cushman R, Froomkin AM, Cava A, Abril P, Goodman KW (2010) Ethical, legal and social issues for personal health records and applications. J Biomed Inform 43(5):S51–S55
Dolan B (2004) Medical records: disclosing confidential clinical information. Psychiatr Bull 28:53–56
Groll D (2012) Paternalism, respect, and the will author. Ethics 122(4):692–720
IOM Glossary on Migration, 2004, p. 34
Little M (2009) The role of regret in informed consent. Bioeth Inq 6:49–59
Maxwell D, Gelsdorf K, Santschi M (2012) Livelihoods, Basic Services, and Social Protection in South Sudan. Working Paper 1. Secure Livelihoods Research Consortium. Feinstein International Centre
Miller FD (2013) Consent to clinical research. In (ed.) F. Miller and A. Wertheimer ibid
Millum CJ (2014) Consent under pressure: the puzzle of third party coercion. Ethical Theor Moral Prac 17(1):113–127
O’Neill O (2002) Autonomy and trust in bioethics. Cambridge University Press, Cambridge
Parfit D (2011) On what matters. Oxford University Press, Oxford
Richards JR (2013) Consent With Inducements: The Case of Body Parts and Services. In: Miller F, Wertheimer A (eds) The ethics of consent: theory and practice. Oxford University Press, Oxford
Schonfeld T, Brown JS, Amoura NJ, Gordon B (2011) You don’t know me, but…: Access to patient data and subject recruitment in human subject research. Am J Bioeth 11(11):31–38
Schwab AP, Frank L, Gligorov N (2011) Saying privacy, meaning confidentiality. Am J Bioeth 11(11):44–45
Sen A (1987) The Standard Living: Lecture I, Concepts and Critiques’. In: Sen A, Muellbaur J, Kanbur R, Hart K, Williams B, Hawthorn G (eds) The standard of living. Cambridge University Press, Cambridge, p 11
UNHCR ‘Displacement in the 20th Century Challenge’ in UNHCR Global Trends 2012 available at http://www.unhcr.org.uk/fileadmin/user_upload/pdf/UNHCR_Global_Trends_2012.pdf
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Gerver, M. Consent for Data on Consent. Ethic Theory Moral Prac 18, 799–816 (2015). https://doi.org/10.1007/s10677-014-9553-5
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DOI: https://doi.org/10.1007/s10677-014-9553-5