THE GIFT OF SPIT (AND THE OBLIGATION TO RETURN IT)

Abstract

People can now send a sample of their saliva to an internet-based company in order to discover genetic information about themselves. Entering this ‘direct-to-consumer’ genetic testing (DTC GT) marketplace can result in enticement to engage in various forms of ‘participatory’ practices, such as taking part in genetic research. In this article, we analyse the research activities of one of the largest and best-known DTC GT companies, 23andMe. 23andMe research is based on what they term ‘participant-led’ research methodologies, which utilize a combination of consumers’ genetic information and self-reported data in the form of completed online surveys. Our analysis shows that 23andMe presents research participation as a form of gift exchange, implying some kind of social bond. Social ties between the consumer-participant and 23andMe are integral to the company's ‘novel’ research agenda which relies on the ongoing aggregation of data from a loyal re-contactable cohort. We argue that the notion of gift exchange is used to draw attention away from the free, clinical labour which drives the profitability of 23andMe. We offer an account of a particular form of online research participation which differs from other kinds of participatory medical research. As medical research becomes increasingly driven by large data sets and internet-based research methods, we offer a timely analysis of emerging participatory practices.

Keywords:

• participation
• internet
• Web 2.0
• gift exchange
• genetic testing
• biomedical research

Notes

These letters stand for the base pairs of DNA: adenine, cytosine, thymine and guanine.

We could access these pages because one of the researchers was already a 23andMe customer before the research took place.

Linda Avey reportedly left the company in September 2009 but continues to make connections with 23andWe in her personal blog The Life and Times of Lilly Mendel.

http://www.youtube.com/watch?v=pNnULCrYv2c (29 July 2011).

For consistency, hereafter we will resume using the term 23andMe.

https://www.23andme.com/you/community/guidelines (7 July 2011) (archived by WebCite® at http://www.webcitation.org/5zznotBbH).

This is a research method used by many genetic researchers, which entails rapidly scanning the genomes of individuals for comparison, in order to find variation.

See Pels (2003) and http://slow-science.org.

http://spittoon.23andme.com/2008/01/21/the-power-of-we (4 November 2011) (archived by WebCite® at http://www.webcitation.org/62wRPYyb8).

http://spittoon.23andme.com/2009/01/05/23andwe-the-first-annual-update (22 July 2011) (archived by WebCite® at http://www.webcitation.org/60N2TABcj).

These participants were offered the genetic test at a nominal fee of US$ 25 (Do et al. 2011).

We use this term following McGowan & Fishman (2008) use of the term ‘consumer-patient’, to imply the slippage that occurs between customer and participant in these research activities, both in regards to terminology used on the internet and the practices enacted.

https://www.23andme.com/about/consent (7 July 2011) (archived by WebCite® at http://www.webcitation.org/5zzl3i0ri).

https://www.23andme.com/legal/privacy (7 July 2011) (archived by WebCite® at http://www.webcitation.org/5zzn2Lt22).

Genetic information.

Observable characteristics, behaviour, traits.

http://spittoon.23andme.com/2011/06/16/23andme-research-findings-from-you-back-to-you (22 July 2011) (archived by WebCite® at http://www.webcitation.org/60MeO68xr).

http://spittoon.23andme.com/2011/07/26/roots-into-the-future (4 November 2011) (archived by WebCite® at http://www.webcitation.org/62wR76EGj).

http://www.youtube.com/watch?v=4g5pXnhIEjA (29 July 2011).

http://spittoon.23andme.com/2010/01/26/23andme-parkinsons-research-initiative-progress-update (22 July 2011) (archived by WebCite® at http://www.webcitation.org/60N0tEusP).

http://spittoon.23andme.com/2011/07/06/a-recipe-for-disease-research-give-people-tools-add-passion-and-shake (22 July 2011) (archived by WebCite® at http://www.webcitation.org/60Md3YntP).

23andMe have since announced that this application was successful”?

http://vator.tv/news/2011-01-07-23andme-adds-9m-to-series-c-round (19 October 2011) (archived by WebCite® at http://www.webcitation.org/62YLAXQJv).

See http://www.genomicslawreport.com and http://www.genomesunzipped.org.

See Gibson and Copehnaver (2010) for a discussion of the ethical issues raised in relation to 23andMe research.

See McGowan et al. (2010).