Moving beyond Consent for Citizen Science in Big Data Health Research

Author: Anne Cheung

Date written: March 29, 2017


Consent has been the cornerstone of personal data privacy regime. This notion is premised on the liberal tenets of individual autonomy, freedom of choice and rationality. More important, consent is only meaningful if data subjects are fully informed and parties are of equal bargaining power. Under orthodox framework, it is believed that privacy can be waived by consent.

The above concern is particularly pertinent to citizen science in health and medical research, in which the nature of research is often data intensive with serious implication for individual’s privacy and other interests. Although there is no standard definition for citizen science, it includes generally the gathering and volunteering of data by non-professionals, the participation of non-experts in analysis and scientific experimentation, and public input into research and project. Citizens become experimenters, stakeholders, purveyors of data, research participants or even partners. Consent from citizen scientists is indispensable as it is a constitutive element for self-determination and self-empowerment for participants. Furthermore, consent from data subjects determines the responsibility and accountability of data users. Yet with the advancement of data mining and big data technologies, risks and harm of subsequent data use may not be known at the time of data collection. Progress of research often extends beyond the existing data. Namely, researchers of existing team or even third parties can match data sets to re-identify individuals. Furthermore, big data technology use and transfer of data for other unforeseen purposes maybe outside the control of the original research team. In other words, consent becomes problematic in citizen science in big data era. The model that one can fully specify the terms in notice and consent has become an illusion.

Is consent still valid? Should it still be one of the critical criteria in citizen science health research which are collaborative and contributory by nature? With a focus on the issue of consent and privacy protection, this study will analyze not only the traditional informed consent model but also the alternative models of “open consent”, “portable consent,” “dynamic consent,” and “meta consent.” Facing the challenges that big data and citizen science pose to personal data protection and privacy, this paper explores the legal, social and ethical concerns behind the concept of consent. It argues that we need to move beyond the consent paradigm and take into account a much broader context of harm and risk assessment. Ultimately, what lies behind consent are the entailing values of autonomy, fairness and propriety in the name of research.

Paper is available in SSRN, click here.