Jar City and other biodigital fictions

On a train journey back from Lancaster – to visit CESAGen – partly for this event ‘The Post-genomic Condition‘ I also read the novel Jar City (2006).  This Icelandic crime thriller has a film version and uses the Icelandic Heath Sector Database (later known as DeCode), as part of the plot.  Genetics becomes an interesting plot device, motivating strong feelings and culminating in murder.  Questions of privacy, identity and access to highly secure information collected in the name of genetic research lie at the centre of the novel.

In terms of the use of genetics as a plot device it is not unlike another crime novel Fever of the Bone (2009). This manages to introduce the HFEA and UK databases with similar questions into a crime novel.

These books demonstrate the purchase that genetics has in everyday life and its role in bringing a new twist to stories about identity. In both Jar City and Fever of the Bone much of the action is propelled by insider access to highly technologised databases underwritten by computing architecture and state level storage of information about biological information. However, both plots also circulate around emotions attached to family, grief and continuity of identity.   In both novels a fine line between new technologies and everyday life is negotiated in an interesting, dramatically successful and informative way.  Jar City has the edge on dramatic success and draws a striking analogy between the storage of body parts in formalin and the storage of genetic information in databases.

The comparison between these different methods of biomedical storage and retrieval (body parts in jars and biomedical information in databases) sparked a series of questions about the concept of corporeal fetishism which I’ve been thinking about in relation to When Biometrics Fail and I’ll be posting some notes on this shortly.

circulating genomes update

Just got back from the Circulating Genomes meeting at the  ESRC Genomics Forum organised by  Alessandro Delfanti (International School for Advanced Studies). There was some really interesting discussion around the theme of sharing, nicely summed up by Steve Yearly in his closing comments as at once an innocent term, but one that can indicate excess, and one that (in practice and demand) constitutes kinds of community. There were contributions from open science, open publishing, genome sharers as well as social and cultural studies of science.  Misha Angrist shared some of his experiences from the PGP and on the same panel Stuart Hogarth reflected on experiences in UK policy engagement whilst Marina Levina asked us to think about network identity and pre-patient identity.

I’m posting my notes here. I asked people to think about the amount of talk generated by circulating genomes and suggested that too much of a particular kind of talk might be getting in the way of the communication of content. I also ended up advocating television audiences as a space of civic possibility.

CirculatingGenomes

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.

Living books about life – launched

Living Books About Life is a series of curated, open access books about life — with life understood both philosophically and biologically — which provide a bridge between the humanities and the sciences. Produced by a globally-distributed network of writers and editors, the books in the series repackage existing open access science research by clustering it around selected topics whose unifying theme is life: e.g., air, agriculture, bioethics, cosmetic surgery, electronic waste, energy, neurology and pharmacology.

http://livingbooksaboutlife.org/

BSSN column in G-Scene

Brighton and Sussex Sexualities Network monthly column in G-Scene – Jan 2012 is here:

http://www.gscene.com/pdf/gscenejanuary2012.pdf

QUEER ONLINE AND QUEER CANCER: A REVIEW

In 2006 I was involved in editing a collection of academic essays under the title Queer Online. I really enjoyed the project and it generated a reasonable amount of interest for an academic book. I tried to incorporate essays to reflect a varied LGBT experience of digital culture and to engage with debates in the field. So far so good; it was fun although it also had its share of disasters. My co-editor’s partner (who is an artist) designed the image for the front cover: a surfing fairy. People still buy it on occasion. Ever since its publication I’ve thought about how I’d do things differently, about what worked and what was missing. There are many answers to ‘what was missing’ but questions about both lesbian identity and biomedical concerns seem like obvious gaps now.

These are not necessarily linked and they weren’t completely absent. The inclusion of Sharif Mowlabocus’ (Sussex) work on barebacking and HIV provided one link to biomedicine and Irmi Karl’s (Brighton) work was in part about speaking to lesbians and their use of technology.

I recently attended an Internet Research (IR 12) conference in Seattle. This is an exciting and well-established event which has cultivated a strong LGBT dimension over the years. Many of the contributors of the original Queer Online collection were there, and there were conversations about Tom Bollestorf’s Coming Of Age In Second Life (and Tom gave a keynote at the conference), and a recent collection LGBT Identity And Online New Media. This latter book, an excellent collection by Chris Pullen (Bournemouth) and Margaret Cooper (Illinois), makes the idea of revisiting my own fairly redundant. However, from the conference as a whole and in reviewing these other books my feeling that there is a lack of visibility for research on the intersection of lesbian identity and media technologies, and on biomedical and biotechnological aspects of digital culture, was strengthened.

I did find a way forward though. One paper at this conference really stood out in bringing these concerns together; Mary Bryson (British Columbia) gave an excellent presentation called The Queer Biopolitics Of Feeling Cancer. It was just amazing to hear about this project that works so carefully with the cancer narratives generated online by queer women. In working with these blogs and web materials Mary offered a challenge to the pressure that those living with cancer are under to express a progress narrative. Heroic stories of battling against all odds and of regaining some kind of normal dominate participatory media culture in this area. Mary persuasively demonstrated that working with these materials through a queer lens might offer a way forward for a different and more inclusive ethics of research, a more joined up biomedical ethics that engages the pressure to be normal, and the inequality and marginalisation in health care settings and health knowledge. It won’t cure cancer but this kind of work attends to those living and dying with cancer whist challenging the intersection of information and biotechnology that is the contemporary culture of DIY health knowledge.

More info about Mary Bryson: http://ubc.academia.edu/MaryKBryson

BY KATE O’RIORDAN

BRIGHTON & SUSSEX SEXUALITIES NETWORK (BSSN) The BSSN is an inter-university research network aimed at supporting research and researchers who work on issues of human sexuality within the Universities of Brighton and Sussex and the wider Sussex area. We consist of community members and academics who have an interest in knowing about current sexualities research. Our organising committee, which is open to all, meets about twice a year. A sub-committee organises our annual conference. Anyone can come to these to suggest and organise events http://www.it.bton.ac.uk/bssn

Writing Biodigital Life: Personal Genomes and Digital Media

A really interesting publication – and one I was really pleased to be involved with – is this special issue of the Journal of Biography – edited by Margaretta Jolly

Life Writing and Intimate Publics

There are a couple of pieces that relate to the biodigital theme:

  • Tell-Tale Heart: Organ Donation and Transplanted Subjectivities
  • Writing Biodigital Life: Personal Genomes and Digital Media

and also a couple of really interesting pieces that take very different directions:

  • Life Writing and Intimate Publics: A Conversation with Lauren Berlant
  • “Suffused by Feeling and Affect”: The Intimate Public of Personal Mommy Blogging

BSSN column in G-Scene on gay genes

BRIGHTON & SUSSEX SEXUALITIES NETWORK – G-Scene Column July 2011 

By Kate O’Riordan

Gay genes: from acceptance to anger

In the early 1990s the gay gene caused quite a stir. There was lots of media coverage and Dr Dean Hamer who claimed the discovery became something of a public figure. An enduring question about identity – are we born or made – seemed to be answerable.  T-shirts were printed up in San Francisco and worn in the Castro with the legend ‘thanks for the genes mom!’ However, in the ensuing twenty years a lot has changed.  A more recent engagement with the question of the gay gene by an LGBT community in Newcastle registered much more anger than approval. A closer look at the reception of the gay gene tells us that even in the early 1990s not everyone was happy about the claim.

Biomedical explanations for sexuality and gender identity are reported every few years in scientific journals. Before the gay gene there was the gay brain. The transsexual gene made an appearance in 2008. However, the gay gene studies were never replicated. Replication is necessary in the sciences for an experimental result to be transformed into reliable science. Not only did replication fail to occur but other research found contradictary results. We are no closer to an actual gay gene now than we were before the claim of its discovery in the 1990s.

The first gay gene reporting happened in the context of the Human Genome Project (a15-year big science project that mapped the human genome). It was a really exciting time in genetics and news stories about genes saturated the news during the late 1980s and 1990s. Many of the results that came out of this were both robust and exciting. Not so the gay gene. Although news of this came at the same time as the map it wasn’t actually connected.  It drew on the buzz of gene stories that were in vogue at the time but it wasn’t part of same bigger picture.

Gay gene stories in the UK press in the 1990s were quite critical and well informed. The press had a close relationship with scientists and people in the LGBT community. They had developed a relationship, partly because of working together in relation to the AIDs crisis.  One academic – Professor Jenny Kitzinger – at Cardiff University argues that this explains why gay gene news was so well informed and why the experts cited in stories in the 1990s were not only scientists but also LGBT spokespersons. Science stories usually give prominence to scientific experts so this was quite unusual.

Unfortunately, it seems like things have changed. News stories about sexuality and genetics, and other biomedical stories, are much less critical today.  Journalists writing on these topics seem more likely to accept genetic explanations and are less likely to be informed by LGBT commentary. The gay gene now appears as an origin story, used to give a quick history of research in science stories, but not questioned.  It is unsurprising then that the reception of biomedical sexuality research has shifted from approval to anger. In an area charged with such high stakes we need a return to critical reporting.

The Brighton & Sussex Sexualities Network (BSSN) is an inter-university research network aimed at supporting research and researchers who work on issues of human sexuality within the Universities of Brighton and Sussex and the wider Sussex area. We consist of community members and academics who have an interest in knowing about current sexualities research. We have an organising committee, which is open to all, and which meets about twice a year. A sub-committee organises our annual conference. Anyone can come to these meetings to suggest and organise events.