Ethical Framework - Work package 5
The aim of WP5 is to address certain specific ethical challenges arising from biobanks operating across boundaries of diverse ethical norms and values. The focus will be on the collection of samples planned in WP2 in Pakistan, and the specific ethical challenges that this will generate for various stakeholders.
We will focus especially on areas where no guidelines exist, or where there is a culturally dependent plurality of interpretations of guidelines. We expect to find such diversities regarding the interpretation of the requirements of informed consent and in norms regarding how potential benefits of biobanks should be used. In addition, there are likely to be issues about stigmatization of vulnerable populations, gender and group identities.
The research process will comprise the following steps:
- An initial literature review of existing state of the art literature on the normative regulation of biobanks has been begun. Expanding on that, we will seek a preliminary identification of potential ethical concerns for biobanks operating across diverse ethical cultures [MEJN and PhD].
- Initial stakeholder analysis: Based on the findings in (1) we will construct a modified ethical matrix (Jensen et al. 2010; Mepham et al. 2006) and use this to find out how different stakeholders weigh and balance these concerns. Stakeholders will include local and collaborating researchers in Denmark and Pakistan, donors, university administrators, as well as representatives of patients and benefactors. The stakeholder analysis will be carried out in workshops in DK and in Pakistan in collaboration with researchers in WP2 and WP1 [PhD-student, MEJN, KP, PS and KH].
- Based on findings in (1) and (2), we will select three specific challenges that will be subject to detailed ethical analysis. Desiderata for challenges to be selected are that
i) they comprise theoretically weighty questions,
ii) affect many people, and
iii) that they arise from diverse and culturally dependent ethical norms and values.
When the three challenges are found, we will identify and analyse strategies that might be used to deal with them (e.g. compromise, overlapping consensus, imposing norms, agreeing to disagree). The strategies will be drawn from contemporary state of the art political philosophy concerning globalization, cosmopolitanism and radical pluralism (Benhabib, 2002; Bohman, 1995; Gaus, 2010; Kymlicka, 1991; Rawls, 1996; Rawls, 1995).
The aim of (3) will be to analyze the theoretical and practical feasibility of these strategies in the specific context of biobanks operating across ethical boundaries [MEJN and PhD student].
- In parallel with data collection process in Pakistan planned in WP2, we will initiate an additional case study of ethical problems and challenges encountered in that process [PhD student].
- Finally, there will be a synthesizing analysis of selected ethical challenges and proposed solutions incorporating findings in (1), (2), (3) and (4), as well as findings in WP1 and WP4. This analysis will assess the viability of the proposed solutions in the light of legal, institutional and moral commitments of a biobank based at the University of Copenhagen [PhD student, MEJN, KP and PS]. The analysis will feed into a proposal for guidelines for good governance of biobanks operating across ethical and legal cultural boundaries that is to be drafted in WP6.
leader: Klemens Kappel [KP](HUM). Participants: Peter Sandøe [PS] (SCIENCE); Morten Ebbe Juul Nielsen [MEJN] (HUM), 1 PhD student).