The Nobel Prize as a Reward Mechanism in the Genomics Era: Anonymous Researchers, Visible Managers and the Ethics of Excellence

The Human Genome Project (HGP) is regarded by many as one of the major scientific achievements in recent science history, a large-scale endeavour that is changing the way in which biomedical research is done and expected, moreover, to yield considerable benefit for society. Thus, since the completion of the human genome sequencing effort, a debate has emerged over the question whether this effort merits to be awarded a Nobel Prize and if so, who should be the one(s) to receive it, as (according to current procedures) no more than three individuals can be selected. In this article, the HGP is taken as a case study to consider the ethical question to what extent it is still possible, in an era of big science, of large-scale consortia and global team work, to acknowledge and reward individual contributions to important breakthroughs in biomedical fields. Is it still viable to single out individuals for their decisive contributions in order to reward them in a fair and convincing way? Whereas the concept of the Nobel prize as such seems to reflect an archetypical view of scientists as solitary researchers who, at a certain point in their careers, make their one decisive discovery, this vision has proven to be problematic from the very outset. Already during the first decade of the Nobel era, Ivan Pavlov was denied the Prize several times before finally receiving it, on the basis of the argument that he had been active as a research manager (a designer and supervisor of research projects) rather than as a researcher himself. The question then is whether, in the case of the HGP, a research effort that involved the contributions of hundreds or even thousands of researchers worldwide, it is still possible to “individualise” the Prize? The “HGP Nobel Prize problem” is regarded as an exemplary issue in current research ethics, highlighting a number of quandaries and trends involved in contemporary life science research practices more broadly

Public appraisal of government efforts and participation intent in medico-ethical policymaking in Japan: a large scale national survey concerning brain death and organ transplant

BACKGROUND: Public satisfaction with policy process influences the legitimacy and acceptance of policies, and conditions the future political process, especially when contending ethical value judgments are involved. On the other hand, public involvement is required if effective policy is to be developed and accepted. METHODS: Using the data from a large-scale national opinion survey, this study evaluates public appraisal of past government efforts to legalize organ transplant from brain-dead bodies in Japan, and examines the public's intent to participate in future policy. RESULTS: A relatively large percentage of people became aware of the issue when government actions were initiated, and many increasingly formed their own opinions on the policy in question. However, a significant number (43.3%) remained unaware of any legislative efforts, and only 26.3% of those who were aware provided positive appraisals of the policymaking process. Furthermore, a majority of respondents (61.8%) indicated unwillingness to participate in future policy discussions of bioethical issues. Multivariate analysis revealed the following factors are associated with positive appraisals of policy development: greater age; earlier opinion formation; and familiarity with donor cards. Factors associated with likelihood of future participation in policy discussion include younger age, earlier attention to the issue, and knowledge of past government efforts. Those unwilling to participate cited as their reasons that experts are more knowledgeable and that the issues are too complex. CONCLUSIONS: Results of an opinion survey in Japan were presented, and a set of factors statistically associated with them were discussed. Further efforts to improve policy making process on bioethical issues are desirable

CRISPR in context : towards a socially responsible debate on embryo editing

Following the birth in 2018 of two babies from embryos altered using CRISPR-Cas9, human germline gene editing (GGE) moved from abstract concern to reality. He Jiankui, the scientist responsible, has been roundly condemned by most scientific, legal and ethical commentators. However, opinions remain divided on whether GGE could be acceptably used in the future, and how, or if it should be prohibited entirely. The many reviews, summits, positions statements and high-level meetings that have accompanied the emergence of CRISPR technology acknowledge this, calling for greater public engagement to help reach a consensus on how to proceed. These calls are laudable but far from unproblematic. Consensus is not only hugely challenging to reach, but difficult to measure and to know when it might be achieved. Engagement is clearly desirable, but engagement strategies need to avoid the limitations of previous encounters between publics and biotechnology. Here we set CRISPR in the context of the biotechnology and fertility industries to illustrate the lessons to be learned. In particular we demonstrate the importance of avoiding a ‘deficit mode’ in which resistance is attributed to a lack of public understanding of science, addressing the separation of technical safety criteria from ethical and social matters, and ensuring the scope of the debate includes the political-economic context in which science is conducted and new products and services are brought to market. Through this history, we draw on Mary Douglas’ classic anthropological notion of ‘matter out of place’ to explain why biotechnologies evoke feelings of unease and anxiety, and recommend this as a model for rehabilitating lay apprehension about novel biological technologies as legitimate matters of concern in future engagement exercises about GGE