Understanding the Human Genome Project: a biographical approach

• Published in: New genetics and society Vol. 27; no. 4; pp. 353 - 376
• Main Author: Zwart, Hub
• Format: Journal Article
• Language: English
• Published: Abingdon Routledge 01.12.2008; Taylor & Francis Ltd
• Subjects: Autobiographical literature; Autobiographical Materials; Autobiographies; Autobiography; Bioethics; Epistemology; Genetics; Genomes; Human genetics; Human Genome Project; Information; micro-epistemology; Philosophy; Project evaluation; Science; science autobiographies; Scientific research; Scientists
• DOI: 10.1080/14636770802485434
• ISSN: 1463-6778

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 micro-epistemological 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.