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This paper is a contribution to the following research projects: "New Ethical Frameworks for Genetic and Electronic Health Record Databases,â[euro] funded by the Estonian Science Foundation grant (in the European Economic Area/Norwegian Financial Mechanisms scheme) from 2008 to 2010 and "Critical Analysis of Relativism and Pluralism Regarding Truth and Knowledge, Norms and Values,â[euro] funded by the Estonian Ministry of Education and Research from 2008 to 2013.
I would like to thank Tiina Kirss for valuable suggestions and help with my English, Laura Lilles for careful assistance with my paper, and Kristi Lõuk, Eva Piirimäe, and Kadri Simm for useful comments. And last but not least, I would like to thank the editor Thomasine Kushner for her encouragement and patience.
Introduction
Whereas in the 1970s early bioethicists believed that bioethics is an arena for the application of philosophical theories of utilitarianism, deontology, and natural law thinking, contemporary policy-oriented bioethicists seem rather to be keen on framing ethical issues through political ideologies. Bioethicists today are often labeled "liberalâ[euro] or "communitarian,â[euro] referring to their different understandings of the relationship between the individual and society. Liberal individualism, with its conceptual base of autonomy, dignity, and privacy, enjoyed a long period of dominance in bioethics, but it has increasingly come under attack from ideologies promoting a more salient role for concepts of solidarity, community, and public interest.
In the context of research ethics, it has been argued that principles of individual autonomy, informed consent, and privacy can seriously hamper medical research that aims to further the common good.1 Although technologies for the gathering and analysis of information have evolved rapidly, strict regulations protecting individual rights have obstructed the use of that information. For example, it has been pointed out that epidemiological research has been impeded by the impossibility of collecting statistical data without a subject's informed consent.2 In relation to biobanks, it is widely believed that restrictions requiring new informed consent for the re-use of biological samples and data severely limit research for the common good or public interest.3
The rethinking of ethical frameworks is best reflected in the several restrictions to which the concept of informed consent has since been subjected: the concept has either been modified (e.g., open or...