Free market solves pharma – citizen science

Citizen science has a mixed reputation. It includes well-organized, crowd-sourced efforts like the 1830s British great tidal experiment that enlisted members of the public to monitor tides at 650 coastal locations, but it also includes less rigorous dabbling by amateurs.3 Successful citizen science projects often engage laypeople, supervised by professional scientists, to collect and analyze data or even to assist in creating the finished scholarly works4—in other words, the citizens are a source of labor. This article explores an alternative model—citizen research sponsorship—in which citizens supply essential capital assets to support research. The assets could be monetary (research funding, for example), although this article focuses on a different kind of capital: data resources, which are a critical input for twenty-first century biomedical research.5 The citizen research sponsorship model flips the traditional control relationship of citizen science. Instead of laypeople laboring under the supervision of professional scientists, the professional scientists work at the instigation of citizen groups, using the people’s data for projects the people endorse. Citizen groups that control an essential research input, such as data or biospecimens, sometimes succeed in leveraging their asset to enlist qualified scientists to generate desired knowledge. This sponsorship model was exemplified late in the 1980s when a group of Canavan-disease-affected families developed a disease registry and biospecimen bank and leveraged these resources to spur discovery of associated genetic variants and development of a diagnostic test.6 Their sponsorship took the form of supplying data and biospecimens for the research, as opposed to providing funding. This revealed a new dynamic in the era of informational research7 that mines preexisting health records and data derived from biospecimens: money will follow a good data resource, instead of data resources following (and having to be generated by) those who hold money. Data resources are a central currency of twenty-first-century science, and the question is, “Who will control them?” The Canavan families’ scientific success was later marred by litigation when their chosen investigator elected to patent his discoveries and charge royalties on the test.8 They had naively assumed he would put his discoveries into the public domain.9 Citizen sponsors, like any other research sponsors, need well-drafted research agreements if they want to avoid unpleasant surprises. The Canavan families’ greatest contribution to science ultimately may have been that they demonstrated the power of well-organized citizen groups—perhaps, next time, with appropriate consulting and legal support—to instigate high-quality scientific research. Hiring lawyers and scientists is relatively straightforward if a citizen group has money, and money need not always come from external fundraising and donors. A citizen group that controls a critical data resource, coupled with a workable revenue model, may be able to monetize its resource lawfully and on terms ethically acceptable to the group members.