Towards a responsibilization of stem cell researchers: a bioethical inquiry

Abstract

This thesis considers the possible role of SC researchers from the perspective of responsibilization. In the context of SC research responsibilization involves how SC researchers are equipped in terms of knowledge, skills and other needs in order to be capable of taking responsibility for the ethical implications of their research. This thesis aims to improve responsible research conduct and innovation in the field of stem cell research, by focusing on 1) identifying what the responsibilization of SC researchers would entail and 2) evaluating the role of SC researchers in taking (co-)responsibility for the ethical implications of their research. This thesis is divided into four parts: empirical roots of responsibilities in SC research, organizing the process of responsibilization, implementing responsibilization and the general discussion. In the first part of this thesis, several empirical studies are depicted that illuminate different responsibilities in the field of SC research. To this end, the perspectives of both SC researchers and patients, on what they consider to be their role in dealing with ethical challenges and what they would need to take responsibility for the ethical implications of SC research are described. Moreover, perspectives of clinicians and patients are discussed in light of whether patients should be recontacted by professionals when there are new developments or when new (genetic) information becomes available. In addition, the evolution of policies and regulations applicable to SC research in Europe is discussed, which revealed possible challenges and ascertain possibilities for harmonization with reference to regulation of SC research. The second part of this thesis assesses the organization of responsibilization. This assessment contains a scrutinization of the notion of responsibility and where responsibilization ought to be directed at. The third part focuses on how SC researchers could take responsibility for the ethical implications of their research, by focusing on how they could learn to recognize and reflect on the ethical implications of their research. To this end, a heuristic tool for SC researchers to recognize the broad ethical implications of their research is discussed. Moreover, this part describes how moral imagination could be used as an educational tool for ethics education in biomedical sciences. This thesis concludes that the responsibilization of SC researchers materializes on several levels, which include 1) organizational arrangements to reduce academic pressure and incentives to commit fraud, 2) governance frameworks that steward researchers in their research possibilities and in having guidance how to act and 3) education and training to acquire adequate knowledge, skills and attitudes. In respect to taking responsibility for the ethical implications of their research, it would be helpful for all SC researchers to have some knowledge and skills to recognize the ethical implication of their research. However, it is questionable whether all SC researchers should be fully equipped for finding solutions for the ethical challenges of their research. Rather, a few researchers who are motivated to deal with the broad ethical implications are necessary.