Public Legitimacy of Digital Research Methods

Citizens are providing more and more data in the public domain that are accessible to researchers. However, 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). This project aims to develop a public legitimacy framework for digital methods to address ethical challenges in relation to the use of digital research methods.

Background

The accessibility and scope of publicly available data resulting from the growing digitalization of society led to unprecedented opportunities and challenges of public data reuse for researchers. In bioethical and social science research, such data is 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. Digital methods can be defined as “the use of online and digital technologies to collect and analyse research data”. Despite their value and the availability of public digital data for the research community, many ethical questions that these new opportunities pose have yet to be adequately addressed.

Ethical Challenges

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 by accepting 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.

Response

A response to these issues could be the development of a social contract between the research community and the public, to define under which conditions digital research methods enjoy public trust and legitimacy. Public trust in science and public legitimacy, as an effect of public trust, are key criteria for research (4,5). We understand public trust to be a concept that grows in the public sphere from open public discourse and as a result legitimises research action. Public trust is established in anticipation of a net benefit for the public as well as the research community (6). Following this understanding of public trust, we hypothesise that if the public trusts and understands digital methods, such public trust legitimises scientists using digital methods.

Aim

We aim to develop a public legitimacy framework for digital methods through a participatory and inclusive research method. To this aim the objectives are:

1. To identify the conditions for public legitimacy of digital methods applied to publicly available data;
2. To understand if public views differ depending on who is using digital methods, in what context and with what data types;
3. To understand the gaps and needs for research communication about digital methods that aims to increase public trust.

Project Plan/Milestones

1. Preparation and methods development
2. Recruitment and set up of citizen fora
3. Data collection
4. Analysis and dissemination of results