Circulating Genomes: sharing in the life sciences sector – an event

Circulating genomes: sharing in the life sciences sector, ESRC Genomics Forum, Edinburgh, 9-10 February 2012

A forum for discussing novel and emergent practices of sharing in genome research, personal genomics projects and direct-to-consumer testing.

9-10 February 2012
Genomics Policy & Research Forum, University of Edinburgh

Thursday, February 9, 15:30 – 17:30
Session 1: How to promote openness in genome research

Chair: Jenny Reardon (University of California Santa Cruz)

Theodora Bloom (PLoS Biology):
“Promoting and incentivising openness: incentives, nudges and mandates”

Alessandro Delfanti (International School for Advanced Studies):
“Open for business: private companies and shared genomes”

Javier Lezaun (University of Oxford)
“Public matter: on the property and properties of material references”

Cameron Neylon (Science and Technology Facilities Council)
“Openness in Genome Research: Still leading the research community or
falling behind?”

Friday, February 10, 10:00 – 12:00
Session 2: Sharing practices in personal genomics projects and
direct-to-consumer testing

Chair: Alessandro Delfanti (International School for Advanced Studies)

Misha Angrist (Duke Institute for Genome Sciences & Policy)
“My ‘Ome’ is Not My Castle”

Stuart Hogart (King’s College London)
“Hip to the hype or hyping the hip? A critical perspective on personalised medicine”

Marina Levina (University of Memphis)
“A Pre-Patient’s Bill of Rights: Genomic Data-Sharing, Citizenship and the Moral Economy of the Network”

Kate O’Riordan (University of Sussex)
“Active and passive audiences revisited? Challenges in digital genome reading”

12:00 – 12:30
Concluding remarks: Steve Yearley (Genomics Forum, University of Edinburgh)

**

How do genomes circulate today? During the last two decades, the opposition between “closed” intellectual property rights models and “open” forms of data sharing has been depicted as a conflict between public-funded and corporate science. On one side is the explosion of patents on genetic sequences, IPRs offices in universities, industrial secrecy and bioprospecting. On the other, the emergence of new tools for sharing based upon the Internet and the return to the old ethos of modern science that have changed the rules of the game, giving birth to an updated form of open science. Yet this description is proving inadequate. Private companies foster open approaches to IPRs or use Web platforms to manage their costumers’ data. Behaviours linked to contemporary phenomena such as hacking and open source movements are contaminating the culture of the scientist.

This workshop will bring together social scientists and genomics
researchers, and ask them to discuss their experiences and critical viewpoints on the transformations brought by new forms of sharing in the realm of genomics. The aim of this interdisciplinary debate is to produce notions that can be useful for policy intervention in this field, and will deepen the understanding social sciences have on new forms of sharing. The workshop will be organised around two sessions:

1) Do we need new regulatory policies and incentives to promote
openness in genome research and innovation? Practices of sharing are creating a novel space and business model for genetic research, and this has deep implications for innovation policies and for the future of our knowledge economies. Yet these changes are linked to a transformation of scientists’ cultures and strategies of action. Also, the separation between public and private research is blurring when it comes to sharing
practices. In this session we will debate new systems of incentives for scientists designed to promote sharing both in public and corporate settings.

2) Which opportunities and challenges are posed by the growth of personal genomics projects based on data sharing? Personal genomics companies and research projects rely on sharing in order to build and analyse new types of data sets. Publication of personal data through social media websites or open source databases are becoming common practices in this field. In this session we want to explore the possibilities for new forms of biomedical research brought about by open personal genomics. At the same time we want to discuss the ethical and regulatory challenges these novelties pose.

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