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

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.

[1]  D. Goldstein.  The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects by Roberto Abadie , 2012 .

[2]  Nico Carpentier,et al.  Bastard Culture! How User Participation Transforms Cultural Production , 2012 .

[3]  R. Shaw.  Thanking and reciprocating under the New Zealand organ donation system , 2012, Health.

[4]  Richard Tutton,et al.  Enterprising or altruistic selves? Making up research subjects in genetics research. , 2011, Sociology of health & illness.

[5]  Greg Goldberg,et al.  Rethinking the public/virtual sphere: The problem with participation , 2011, New Media Soc..

[6]  I. Kerridge,et al.  Tissue donation to biobanks: a review of sociological studies. , 2011, Sociology of health & illness.

[7]  H. Langstrup.  Interpellating Patients as Users: Patient Associations and the Project-Ness of Stem Cell Research , 2011 .

[8]  Nicholas Eriksson,et al.  Efficient Replication of over 180 Genetic Associations with Self-Reported Medical Data , 2011, PloS one.

[9]  Nicholas Eriksson,et al.  Web-Based Genome-Wide Association Study Identifies Two Novel Loci and a Substantial Genetic Component for Parkinson's Disease , 2011, PLoS genetics.

[10]  B. Prainsack,et al.  Voting with their Mice: Personal Genome Testing and the “Participatory Turn” in Disease Research , 2011, Accountability in research.

[11]  M. Massagli,et al.  Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm , 2011, Nature Biotechnology.

[12]  Lilly U. Nguyen,et al.  BIRDS OF THE INTERNET , 2011 .

[13]  Serge Proulx,et al.  Paradoxical empowerment of produsers in the context of informational capitalism , 2011, New Rev. Hypermedia Multim..

[14]  Xigen Li,et al.  Factors influencing the willingness to contribute information to online communities , 2011, New Media Soc..

[15]  Sharon F. Terry,et al.  Power to the People: Participant Ownership of Clinical Trial Data , 2011, Science Translational Medicine.

[16]  Aaron Panofsky.  Generating sociability to drive science: Patient advocacy organizations and genetics research , 2011, Social studies of science.

[17]  Paul Kezmarsky.  The Availability of Genetic Counseling from Direct-to-Consumer Genetic Testing Companies , 2011 .

[18]  Michelle L. McGowan,et al.  Personal genomics and individual identities: motivations and moral imperatives of early users , 2010, New genetics and society.

[19]  Elie Dolgin.  NEWS FEATURE：個別化遺伝学研究 , 2010 .

[20]  Daren C. Brabham.  MOVING THE CROWD AT THREADLESS , 2010 .

[21]  R. Abadie.  The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects , 2010 .

[22]  Clement Adebamowo,et al.  Ancestry-Shift Refinement Mapping of the C6orf97-ESR1 Breast Cancer Susceptibility Locus , 2010, PLoS genetics.

[23]  Brian T. Naughton,et al.  Web-Based, Participant-Driven Studies Yield Novel Genetic Associations for Common Traits , 2010, PLoS genetics.

[24]  G. Gibson,et al.  Consent and Internet-Enabled Human Genomics , 2010, PLoS genetics.

[25]  Catherine Waldby,et al.  National Biobanks: Clinical Labor, Risk Production, and the Creation of Biovalue , 2010, Science, technology & human values.

[26]  H. Wolinsky,et al.  Direct-to-consumer genome testing: opportunities for pharmacogenomics research? , 2010, Pharmacogenomics.

[27]  Linda D. Molm.  The Structure of Reciprocity , 2010 .

[28]  Marina Levina,et al.  Googling your genes: personal genomics and the discourse of citizen bioscience in the network age , 2010 .

[29]  Samantha P. Adams.  Sourcing the Crowd for Health Experiences: Letting the People Speak or Obliging Voice Through Choice? , 2010 .

[30]  B. Robards.  Structures of Participation in Digital Culture , 2010 .

[31]  E. Dolgin.  Personalized investigation , 2010, Nature Medicine.

[32]  N. Hallowell,et al.  An investigation of patients’ motivations for their participation in genetics-related research , 2009, Journal of Medical Ethics.

[33]  Malorye Allison,et al.  Can web 2.0 reboot clinical trials? , 2009, Nature Biotechnology.

[34]  W. Hall,et al.  Direct-to-Consumer Genome-Wide Scans: Astrologicogenomics or Simple Scams? , 2009, The American journal of bioethics : AJOB.

[35]  G. Pálsson.  Biosocial Relations of Production , 2009, Comparative Studies in Society and History.

[36]  G. Eysenbach.  Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness , 2008, Journal of medical Internet research.

[37]  M. McGowan,et al.  Using Lessons Learned From BRCA Testing and Marketing: What Lies Ahead for Whole Genome Scanning Services , 2008, The American journal of bioethics : AJOB.

[38]  Gill Haddow,et al.  Promoting research participation: why not advertise altruism? , 2008, Social science & medicine.

[39]  M. Callon,et al.  The Growing Engagement of Emergent Concerned Groups in Political and Economic Life , 2008 .

[40]  Steven Epstein,et al.  Patient Groups and Health Movements , 2008 .

[41]  Axel Bruns,et al.  Blogs, Wikipedia, Second Life, and Beyond: From Production to Produsage , 2008 .

[42]  Erika Pearson,et al.  Digital gifts: Participation and gift exchange in Livejournal communities , 2007, First Monday.

[43]  W. Mccray,et al.  Amateur Scientists, the International Geophysical Year, and the Ambitions of Fred Whipple , 2006, Isis.

[44]  Edmund A. Mennis.  The Wisdom of Crowds: Why the Many Are Smarter than the Few and How Collective Wisdom Shapes Business, Economies, Societies, and Nations , 2006 .

[45]  A. Lawrence.  ‘No Personal Motive?’ Volunteers, Biodiversity, and the False Dichotomies of Participation , 2006 .

[46]  S. Wyatt,et al.  'Ignorance is bliss sometimes': constraints on the emergence of the 'informed patient' in the changing landscapes of health information. , 2003, Sociology of health & illness.

[47]  M. Callon,et al.  Research “in the wild” and the shaping of new social identities , 2003 .

[48]  D. Pels.  Unhastening Science: Autonomy and Reflexivity in the Social theory of Knowledge , 2003 .

[49]  J. Barlow,et al.  Smart Mobs: The Next Social Revolution , 2003 .

[50]  R. Tutton.  Gift Relationships in Genetics Research , 2002, Science as culture.

[51]  Howard Rheingold,et al.  Smart Mobs: The Next Social Revolution , 2002 .

[52]  C. Waldby.  Stem Cells, Tissue Cultures and the Production of Biovalue , 2002 .

[53]  Magnus Bergquist,et al.  The power of gifts: organizing social relationships in open source communities , 2001, Inf. Syst. J..

[54]  Diane Tober,et al.  Semen as Gift, Semen as Goods: Reproductive Workers and the Market in Altruism , 2001 .

[55]  Tiziana Terranova.  Free Labor: Producing Culture for the Digital Economy , 2000 .

[56]  Richard Barbrook,et al.  The Hi-Tech Gift Economy , 1998, First Monday.

[57]  A. Offer.  Between the gift and the market: the economy of regard , 1997 .

[58]  Susan Leigh Star,et al.  Institutional Ecology, `Translations' and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39 , 1989 .

[59]  D. Stough,et al.  A spitting image. , 1989, Cutis.

[60]  M. Mauss.  The gift : Forms and functions of exchange in Archaic Societies / Marcel Mauss , 2020 .

[61]  V. Turner.  The Ritual Process: Structure and Anti-Structure , 1971 .