Data Donation as a Model for Citizen Science Health Research

Abstract

New computational and sensing innovations, coupled with increasingly affordable access to consumer health technologies, allow individuals to generate personal health information that they are then able to submit to a shared archive or repository. This paper presents data donation as a model for healthfocused citizen science, with special attention to the ethical challenges and opportunities that this model presents. We also highlight some existing data donation projects curated by citizen scientists. After describing data donation in more detail, including its relationship to movements like the Quantified Self and research in personalized medicine, we report findings from the Health Data Exploration (HDE) Project's second annual Network Meeting, which was focused on data donation. These findings include identification of four challenges for the ethical conduct of health-focused data donation research: Participant protection, representativeness, incentives to participate, and governance. We use these insights as a springboard for further discussion of specific issues, pointing both to the current state of the field and our suggestions about potential pathways for addressing some of the challenges.

Citizen Science Models in Health Research: an Australian Commentary

“…Recently the concept of "participatory biocitizen" coined by Melanie Swan [37] refers to an activated individual and as a means to realise personalized medicine by sharing life-logging and self-quantification data through social media platforms. Selfquantifiers, in particular, represent high levels of activation that may motivate these individuals to independently mobilise citizen scientists and/or approaches [43,45,46]. These approaches are often typically outside of the instigation of organised health professionals or scientific organisations, as in the case of biohackers [43].…”

“…These approaches are often typically outside of the instigation of organised health professionals or scientific organisations, as in the case of biohackers [43]. In the US, "people powered research networks" (PPRN) are leading on the sharing of quantifiable data, exchanging experiences on treatments, and searching for clinical trials on online platforms [45,47]. Examples include the personalized health and research network, PatientsLikeMe [48], and advocacy network iConquerMS which is focused on the multiple sclerosis (MS) community [49].…”

Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

“…First, initiatives must have solicited the public to: contribute personal genetic information for specific or non-specific research purposes; assist in designing or executing research using genetic information derived from human biospecimens; or crowdsource analysis or management of such information. By accommodating a variety of contributions, this criterion is consistent with the general understanding that the term “citizen science” encompasses diverse study designs, including data donation models [35]. On the other hand, by limiting eligible initiatives to those involving human genetic information, application of this criterion had the effect of excluding projects focused on the genetic information of microbes, plants, and other animals, as well as online citizen science games that involved sequence information presented in the abstract.…”

Citizen science as a data-based practice: A consideration of data justice

“…OH also facilitates the donation of data-processing tools. 32 In OH, lay participants can make data contributions to projects, conduct self-research, and participate in the governance of the platform. 33 As the aggregator of data and participants, OH is a mediator within the data ecosystem.…”