Northwestern Journal of Technology and Intellectual Property
Summer 2018, Volume 16, Issue 1
Abstract: Consent has been the cornerstone of the personal data
privacy regime. This notion is premised on the liberal tenets of individual
autonomy, freedom of choice, and rationality. 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 implications
for individual 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
projects. Consent from citizen scientists 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. In other words, consent becomes problematic in
citizen science in the big data era. The notion that one can fully specify the
terms of participation through notice and consent has become a fallacy.
Is consent still valid? Should it still be one of the critical criteria in
citizen science health and medical research which is collaborative and
contributory by nature? With a focus on the issue of consent and privacy
protection, this study analyzes not only the traditional informed consent
model but also the alternative models. Facing the challenges that big data
and citizen science pose to personal data protection and privacy, this article
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 the much broader context of harm and risk assessment, focusing on
the values behind consent – autonomy, fairness and propriety in the name of
research. Click here to download the full article.
No comments:
Post a Comment