“You Must Click the Button and Donate”: Online Crowdsourcing to Fund Unproven Stem Cell Treatments

• In Event: Big Health Data and Algorithmic Authority

Abstract

Many people who undergo unproven stem cell-based interventions seek financial support from their communities to fund what are often costly treatments and associated expenses. Crowdsourcing has been identified as a key way people raise funds for a host of medical treatments, however little is known about people’s use of online fundraising sites to fund unproven stem cell-based interventions. This paper draws on quantitative and qualitative data collected from two popular contemporary fundraising sites (GoFundMe.com and YouCaring.com) in order to garner insight how these sites are being used across different geographical locations to fund purported ‘stem cell treatments’ that have no or weak scientific basis. In addition to mapping the use and success of these online campaigns by people with different health conditions in different locations, we consider the range of visual and discursive techniques that are employed to attract funds for treatments. In so doing we draw on the work of Anne-Marie Mol and John Law to consider how the practices of online crowdsourcing enact certain ‘realities’ about potential patients, stem cells and their therapeutic potential. To conclude we consider the socio-cultural and ethical implications of online crowdsourcing for non-evidenced based treatments in the context of national and global healthcare.

Authors

• Claire Tanner, The University of Melbourne

• Megan Munsie, The University of Melbourne