Public legitimacy of digital research methods
The accessibility and scope of publicly available data have led to unprecedented research opportunities. However, the use of “digital methods” is not without caveats. This project seeks (a) to address the ethical implications of such research methods, and (b) to suggest a way forward.
The benefits of publicly available data are enormous. In bioethical and social science research, such data can be used to understand public sentiment about national and global issues such as vaccination hesitancy, the use of CRISPR-Cas9, the spread of fake news, public opinion about public health measures, or other political action. Despite the undeniable value of digital methods for the research community, many of the ethical questions that these new opportunities pose have yet to be adequately addressed. Foremost, a) citizens providing data in the public domain as, for example, on Twitter often do not know that their provided text might be used for research purposes; b) citizens are not able to consent to this type of research except this is covered in the terms and conditions of a webpage or online application (which are often not read); c) digital methods can disconnect the research community from the society which can stress their relationship.
This project seeks to develop a public legitimacy framework for digital methods through a participatory and inclusive research method to understand under which circumstances digital research methods enjoy public trust and legitimacy. Ultimately, this research will contribute to the growing body of scholarship on how the research community can conduct ethically sensitive research without compromising its potential for innovation serving the well-being of humankind.
In collaboration with other DSI communities (Ethics, Health, Democracy), external partners (Open Mind Institute), and lead-applicant Felix Gille, our community will co-organize four one-day in-person public deliberation fora in Switzerland and initiate ongoing public online fora on the Forum for Global Health Ethics (IBME). We will frame the fora with case studies that include different actors ranging from private to public. The case studies will reflect the actual work of the involved DSI communities. In addition, we will collect descriptive data and synthesize the recorded results with the active involvement of citizens.
Assuring that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in research is a fundamental principle that guides the ethical conduct practiced at research institutions. The digital transformation complicates efforts to sustain these basic tenets. By informing digital methods design, research governance, research communication, and relationship building between research and the public, this research project can contribute to maintaining and nurturing this partnership.