Francis Collins

This article analyzes a number of recently published autobiographies by leading participants in the Human Genome Project (HGP), in order to determine to what extent they may further our understanding of the history, scientific significance and societal impact of this major research endeavor. Notably, I will focus on three publications that fall under this heading, namely The common thread by John Sulston (2002/2003), The language of God (2006) by Francis Collins and A life decoded by Craig Venter (2007).1 What may we learn from these autobiographical sources about the dynamics of scientific change? What is their added value in understanding science in general and the HGP in particular? These questions will be elaborated in three directions: on the level of knowledge (epistemology), power (politics) and the Self (ethics). On the epistemological level, genomics is often presented as a paradigm shift in the life sciences, a tremendous up-scaling of research, an “informatization” of life. Autobiographies may reveal how this shift – usually discussed in more general terms from a philosophy of science or science studies perspective – manifests itself on an individual scale, on a microepistemological level. On the political level, autobiographies may inform us about the micro-politics of scientific change. Finally, on the level of Self, autobiographies may allow us to analyze how researchers, through practices of Self, are actively engaged in constituting themselves as responsible subjects in the face of unpredictable dynamics and unforeseen dilemmas.

Francis Collins was appointed Director of the Human Genome Project (HGP) in 1993, and in 2009, President Barack Obama nominated him as director of the National Institutes of Health (NIH), the largest funding agency for biomedical research in the world. In 2006, Collins published his book The Language of God, an autobiographical account of the HGP. Now, by way of a sequel, we have The Language of Life. The new book, as indicated by its subtitle, is oriented towards “the revolution in personalized medicine”, the impact of the genomics revolution on the personal lives of individuals.

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.

This paper is a book review of Francis Collins' "The Language of God," and describes how a world-renowned scientist came to believe in God. Also contains a critique of of his bio-ethical positions on human cloning and somatic cell nuclear transfer.

One of the most tenacious images used to express ideas and expectations related to the human genome has been the ‘blueprint’ metaphor. In 1999, for example, Francis Collins, director of the Human Genome Project (HGP) indicated that mankind was about to see ‘its own blueprint’, somewhat earlier than had been originally scheduled. During the White House press conference in 2000, the sequenced genome was referred to as ‘the working blueprint of the human race’. The blueprint metaphor became widely used in public debate, moreover, and it was here that it most clearly conveyed its deterministic message. Once we know our blueprint, the metaphor suggests, we will know ourselves. Moreover, others (such as insurance companies or employers) may come to know our blueprints (our destinies) as well, and may want to use it to their own advantage. Finally, the idea of a blueprint suggests the possibility of a future mastery over our own nature, over our own destiny as an individual or a species. Through genetic manipulation, a blueprint may be altered in certain directions, by intentionally adding or deleting genes.