Eleanor Gilmore-Szott (University of Utah)
Even in the age of precision medicine an accurate family health history (FHx) remains a crucial tool in research on heritable diseases and for clinicians in assessing risk and treatment options for patients. However, most individuals lack crucial details about the health history of other family members limiting their ability to provide this valuable information (Welch et. al. 2015). When prompted for your FHx you likely know some details, but recognize you are missing others. Furthermore, you probably know which of your family members would know the details you are missing. This collective wisdom could be compiled to provide a robust FHx.
Crowdsourcing is an epistemic strategy most well known as the methodology employed by Wikipedia. Recently a number of online services have begun to develop digital tools that enable family members to use crowdsourcing to compile their individual knowledge into a detailed FHx. These tools provide validation for the epistemic status of patient testimony and address the practical need for improved information. However, crowdsourcing in this context raises a number of epistemological concerns. Namely, what kind of information is being produced and how should it be evaluated as evidence in research and medical care?
In answering these two questions it is useful to explore the parallels between crowdsourcing FHx and Wikipedia, as Wikipedia is a successful example of crowdsourcing (Fallis 2008). The epistemic success of Wikipedia bodes well for the application of crowdsourcing to FHx, however there are a number of important differences that require further consideration. First, the social circumstances that make Wikipedia a successful epistemological enterprise are not equivalent to those of family groups. Second, as patients can misunderstand their own health history there may not be clear experts. Third, the content produced is neither pure testimony, nor is it a primary source, thereby limiting one’s ability to verify the information presented on these services. All of this calls into question our ability to trust the information produced under these circumstances (Magnus 2009). This poster will apply tools from the field of philosophy of science to assess the use of crowdsourcing for the collection of family health history, and highlight a range of epistemic implications. Despite a number of caveats, the use of crowdsourcing tools will likely put us in a better epistemic position than we would be otherwise. Accordingly, the marks against this method are outweighed by the potential for good.
