CyberGenetics by Anna Harris Susan Kelly Sally Wyatt

Author:Anna Harris, Susan Kelly, Sally Wyatt [Anna Harris, Susan Kelly, Sally Wyatt]
Language: eng
Format: epub
Tags: Social Science, General, Sociology
ISBN: 9781317368182
Google: oNoRDAAAQBAJ
Publisher: Routledge
Published: 2016-04-28T05:08:56+00:00

4

Participation

At the beginning of the first chapter, you made your entry into genetic testing. You sent your money and your saliva to a genetic testing company, and received your results. Perhaps, like some of the testers in the YouTube videos we looked at in Chapter 2, you tried to make sense of the data that purports to tell you about your genetic ancestry or your chances of getting a range of diseases. You might think that you have paid for a service, received the information, and that is the end of your relationship with the company. But there is more. Next time you log into your account, a pop-up box appears. You answer some simple questions. Surveys such as ‘Ten things about you’, ‘Health habits’ and ‘Ten more things about you’ appear regularly in your account. These surveys are enticing and fun, even slightly addictive. The company lets you know that its consent form has changed, and gives you an opportunity to click to sign the new form, which you will not see again unless you look for it. You are now cordially being invited to participate in a research ‘revolution’ (‘Please help us to personalise and improve healthcare by contributing to meaningful discoveries made through genetic research!’), giving the company the right to use your genetic data and survey information, but with assurances that your privacy will be protected as much as possible (and your contact and payment information will not be shared).

People who enter the DTC genetic testing marketplace and provide a saliva sample (or cheek swab or blood sample) not only learn about their own genetic information, but also receive invitations to engage in various participatory practices. Companies such as 23andMe invite its customers to share genetic information with other users, to find ‘relatives’, to post comments on community fora and to become involved in research. In this chapter, we focus on this last form of participation. Not only do individuals send a sample of their saliva, if they engage in the various surveys and other activities as described above they continue to provide data and information. Information is returned to customers in the form of raw genetic test results, analysis and interpretation of genetic data, plus additional material on the company website, blogs and fora about genetics, genetic testing and other company activities. Information is also shared between users, as they can openly invite or search for others to view their genetic results, and through the user-generated content on various 23andMe platforms. In this chapter, we raise the question of why so many people have given, and continue to give, online genetic testing so much information and whether this constitutes participation or some other relationship.

Individuals are increasingly being invited into participatory medical practices, to be ‘patients 2.0’. DTC genetic testing is at the forefront of this development, and it is often promoted as participatory medicine par excellence. Participation refers not only to buying genetic tests online, but also to other forms of ‘participatory’ practices into which

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