Research using social media and ethical approval

The use of social media data in research brings with it new opportunities but also new challenges. The University requires that for any research that involves human participants, their data, or their tissue, the researcher must obtain appropriate ethical approval (see details of the University Research Ethics Committees). Research involving data from social media users therefore requires ethical review.

This includes projects which include social media:

• To recruit participants

• As a data source

• As a data collection tool

• For communication into focus groups, chat rooms, or interviews

Researchers should be aware of the following considerations:

Privacy

The question as to whether online postings are public or private is determined to some extent by the online setting itself, and whether there is a reasonable expectation of privacy on behalf of the social media user - for example is the data from an open forum or platform or obtained from within a closed or private group or discussion forum. Researchers should avoid disrupting (including deceiving) online communities. Researchers should also consider whether permissions from appropriate gatekeepers are required.

Informed consent

Unless the data can be determined as public, researchers should consider whether it is possible to obtain informed consent from social media users. Advice can be sought from forum moderators as to the practicalities of obtaining consent or having an ‘opt-out’ option if the data is from a ‘private’ forum.

If informed consent cannot be obtained, researchers must take care to ensure the rights of social media users are protected and respected in their research and consider what social media users might think about researchers repurposing their data without permission. In most circumstances social media data used in research without consent should be fully anonymised. Verbatim quotations should not be used in any research outputs.

Preventing harm

Consideration should be given to:

• Whether the data is sensitive and there is the potential to cause harm to social media users should their data be exposed to new audiences.

• Whether there is the potential to unknowingly collect data from young or vulnerable participants as social media can often make it difficult to identify such individuals.

Researchers should consider how they might minimise risk and whether the use of social media data is the best option weighed against risk.

In order to minimise harm to themselves, researchers must set up separate social media accounts for their professional profile or for a specific research project.

Legal framework

Researchers should familiarise themselves with the relevant terms, conditions, and guidelines of the social media platform they are using. It is not adequate to assume that social media users are aware of and have given consent for their data to be used for research, even if it is part of the platform’s terms and conditions, as they may have accepted the terms and conditions without reading them and cannot therefore be determined to have given fully ‘informed’ consent.

Funders often require sharing of datasets, but researchers must check the platform terms and conditions to determine whether they allow or prohibit this.

GDPR means that data protection principles such as storage limitation, data minimisation and transparency still apply to social media data.

Withdrawal

Researchers should also consider the practicalities of allowing a participant to withdraw their data – does deleting a post or account equate with a withdrawal from research and is the researcher aware when this happens.

Identification of participants

The republishing of quotes verbatim that have been taken from social media platforms is problematic and should be avoided as they can lead, via search engines, to their original location, often then exposing the identity and profile of the social media user they originate from. Protecting the identity of participants is even more crucial when the data accessed refers to sensitive subject matters.

Images or audio-visual recording relating to participants must not be collected without the explicit consent of the participants.

Methodology

The use of social media data may introduce various methodological issues around bias, data quality and evaluation. There is also a lack of reproducibility in much social media research as data can be altered or removed without the researcher’s knowledge and this should be accounted for when planning the research project.

Each social media research context is unique, with different characteristics and ethical challenges and the responsibility lies with the researcher to ensure an ethical approach is taken to the collection, analysis and re-use of data collected from social media platforms.

Queries can be directed to the appropriate Research Ethics Committee at:

• Biomedical & Scientific Research Ethics Committee (BSREC) BSREC@warwick.ac.uk

• Humanities & Social Sciences Research Ethics Committee (HSSREC) HSSREC@warwick.ac.uk