ABSTRACT
Recent biobank developments reveal the considerable expectations attached to human genetic research. The promises associated with genetic research must, however, be questioned as untangling the genetic and other contributions to many diseases will make accurate prediction difficult if not impossible and thus the prospect of new treatments unlikely (Holtzman and Marteau 2000). Despite the promised research outputs being questioned, authorities are developing policies and programmes on the assumption that genetic research will eventually deliver improved health and other benefits. Reflecting this optimism, in recent years, genetic epidemiology has been accorded a key role in public health's effort to disentangle the genetic, lifestyle and environmental contributions to disease (e.g. Khoury et al. 2000). In many countries, genetics and other biotechnology innovations are seen as having the potential to not only advance the health of individuals and populations but also to contribute to economic prosperity and national identity (Jasanoff 2005: 5–8). The linking of research projects to the enterprise of nation-building is evident in countries that are biotechnology leaders such as Britain, Germany and the United States (Jasanoff 2005), as well as newer entrants to the field such as India, Estonia, and Australia (see, e.g. Bhardwaj 2004 Kattel and Anton 2004). However, despite the efforts of supporters of biobanks to persuade publics of their potential health, economic and national benefits establishing consent and legitimacy for new projects has not been without difficulties. A major problem confronting proponents of biobanks is that the genetic information that they hold is seen by many people as fundamentally different from other kinds of health and personal information thus requiring special consideration in relation to regulation. Public fears about the potential for the misuse of genetic information, including the infringement of privacy, commercial profiteering, and genetic discrimination in insurance and employment, revealed in surveys and other 'consultations', challenge scientists and policy makers to find ways to achieve consent for new genetic research projects. This problem is acute in the case of the new generation, 'prospective' biobanks, which tend to hold DNA and personal medical and genealogical information over a long period of time for unspecified research purposes. In recent years, the limitations of existing 'ethical' protocols and other regulatory devices for addressing the substantive issues arising from the collection, long-term storage and use of this kind of information has become increasingly evident (see, e.g. Tutton and Corrigan 2004; special issue on 'Biobanks; Challenges for "Ethics" ' in Critical Public Health, 15 (4), 2005). These limitations have been of such concern that a new array of ethics and governance protocols has been developed in response to biobank initiatives. Of interest in the context of this paper is the degree to which these rest principally upon the notion of consent, facilitated by programmes of public consultation.
