Ethical issues raised by the research of crowdsourcing as a new medical technology

Jonny Attwood, 6th Year Medical Student at the University of Oxford

To crowdsource a project means outsourcing it to the crowd, where ‘the crowd’ refers to large number of people operating on a given project through the World Wide Web. Crowdsourcing has established itself in the form of crowdfunding (the funding of projects through a large number of small online donations) and in the development of projects like Wikipedia, the online collaborative encyclopaedia, and now it is beginning to be used as a tool for scientific research.

In the scientific setting, crowdsourcing describes the process of placing large amounts of data online and letting members of the internet community perform aspects of analysis on the data in place of researchers and computers. One of the earliest examples of this involved having online users find new planets by looking through images of data collected by the NASA Kepler Space Mission. The project, launched in 2010 and known as Planet Hunters, relies on the fact that humans can be better than computers at recognising visual patterns, and so far has lead to the discovery of two new planets through the activity of nearly 300,000 online users [1]. Another project called FoldIt, launched in 2008, allows users to fold three-dimensional structures representing polypeptide chains in a game format in order to discover novel protein conformations, and has itself identified the structure of a retroviral protease through this approach [2]. More recently, an arcade-style game called MalariaSpot has been developed, allowing users to diagnose cases of malaria by shooting (and thereby counting) the causative parasites on pictures of blood films.

These inventive online tools offer exciting opportunities to scientific and medical research: they are low cost, fast, and can operate around the clock through the combined efforts of thousands of online volunteers. As such, crowdsourcing as a form of medical research technology is beginning to be researched, and the research of this new technology opens up a novel set of ethical questions.

Seven main ethical requirements have come to be expected of clinical research, and several of these requisites, including fair subject selection and informed consent, assume the presence of a well-defined group of subjects to which they can be applied. However, research involving members of ‘the crowd’ who are a diffuse and effectively anonymous group challenges this assumption, and asks us to re-examine our definition of what a human research subject is. In such a way, this new technology offers us an opportunity to test our understanding of what it means to be a subject of research in the 21st century, and develop our ethics in preparation for the next generation of online, collaborative scientific methods.

References:

  1. Planet Hunters: the first two planet candidates to be identified by the public using the Kepler public archive data. D. A. Fischer et al. Mon. Not. R. Astro. Soc. 419 2900-2911 (2012)
  2. Crystal structure of a monomeric retroviral protease solved by protein folding game players. F. Khatib et al. Nat. Struct. & Mol. Biol. 18 1175-1177 (2011)
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Ethical issues raised by the research of crowdsourcing as a new medical technology

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