Abstract
This chapter examines the relationship between the values of research and privacy in the context of medical research on patient data. An analytical framework is developed by interpreting the conception of privacy advanced in the jurisprudence of the European Court of Human Rights by reference to the Principle of Generic Consistency, seminally argued to be the supreme principle of morality by Alan Gewirth. This framework is used to uncloak the inequity of positions uncompromisingly prioritising research values over privacy values or vice versa—research worship and consent worship, respectively. We then apply this framework to three hypothetical studies to show how apparent conflicts between research and privacy values can be resolved.
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Notes
- 1.
Beings that take voluntary steps in pursuit of their freely chosen purposes, which they treat as reasons for their actions.
- 2.
Gewirth (1978, 53–55) identifies, e.g. life and physical well-being (including such means to these as health, food, clothing, and shelter) as basic needs, accurate information as a non-subtractive need, and further information as an additive need. However, as the generic conditions of agency figure in Gewirth’s argument for the PGC (as against in application of the PGC), such concrete specification is not necessary.
- 3.
R v Department of Health ex p. Source Informatics [2001] Q.B. 424, reversing [1999] 4 All ER 185.
- 4.
Campbell v. MGN [2004] UKHL 22.
- 5.
See, e.g., Z v Finland (1998) 25 E.H.R.R. 371; and M.S. v Sweden (1999) 28 E.H.R.R. 313.
- 6.
This follows directly from the idea that human rights in instruments like the ECHR that have their roots in the American Declaration of Independence of 1776 and in the French Declaration of the Rights of Man and the Citizen of 1789 are conceived of as ‘by nature inherent, universal and inalienable’ (Davidson 1993, 5).
- 7.
See, for example, the so-called Peto campaign (reported on in, e.g. Dix 2000).
- 8.
The text of the 2000 version is available at: http://www.wma.net/e/policy/b3.htm.
References
Beyleveld, D. 1991. The Dialectical Necessity of Morality: An Analysis and Defense of Alan Gewirth’s Argument to the Principle of Generic Consistency. Chicago: Chicago University Press.
Beyleveld, D. 2006. Conceptualising Privacy in Relation to Medical Research Values. In First do no Harm: Law, Ethics and Healthcare, ed. S.A.M. McLean, 151–163. Aldershot: Ashgate.
Beyleveld, D., and R. Brownsword. 2001. Human Dignity in Bioethics and Biolaw. Oxford: Oxford University Press.
Beyleveld, D., and E. Histed. 1999. Case Commentary: Anonymisation is not Exoneration. Medical Law International 4: 69–80.
Davidson, S. 1993. Human Rights. Buckingham: Open University Press.
Dix, A. 2000. Cancer experts call for action on GMC’s confidentiality rules. Health Service Journal 4.
Gewirth, A. 1978. Reason and Morality. Chicago: University of Chicago Press.
Gewirth, A. 1996. The Community of Rights. Chicago: Chicago University Press.
Hohfeld, W.N. 1964. Fundamental Legal Conceptions. New Haven: Yale University Press.
Loucaides, L. G. 1990. Personality and Privacy under the European Convention on Human Rights British Yearbook of International Law LXI: 175–197.
Velu, J. 1973. The European Convention on Human Rights and the Right to Respect for Private Life, the Home and Communications. In Privacy and Human Rights, ed. A.H. Robertson, 12–128. Manchester: Manchester University Press.
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Beyleveld, D., Pattinson, S.D. (2023). Moral Interests, Privacy, and Medical Research. In: Boylan, M. (eds) International Public Health Policy and Ethics. The International Library of Bioethics, vol 106. Springer, Cham. https://doi.org/10.1007/978-3-031-39973-2_5
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