Research ethics of data use and reuse

Thanks to Debbie Knight, Di Hopkins and Becky Case for another interesting Research Bites session on the theme of Research Ethics and Ethical review process at Lancaster University.

The slides are available, courtesy of the presenters.

If it’s out there, can I use it?

The primary question raised in this session was whether data relating to human subjects which is in the public domain – whether shared via a data repository, presented as open data, or online, e.g. on social media – can be reused in research simply because it’s available.

The answer was, ‘Not necessarily’.

Ethical review is still necessary as the participants or subjects may not have given their consent to the research.

Primary data

For studies using primary data, such as social media posts, interviews or survey responses being collected for the first time, it will be necessary to provide as much supporting information as you can, such as information sheets for participants, and a sample of the questions being asked.

Applications should be made to the Faculty Ethics Committee, and will likely be reviewed by a sub- or full committee as cases can be complex.

Secondary data

It is still necessary to submit your research through ethical review when re-analysing existing data, e.g. reusing data which has already been made available. This is mainly to ensure that the researcher has applied the principles of:

  • informed consent
  • anonymity
  • security

While anonymity is a principle, it may not necessarily be a requirement, depending on your context. Also, consider whether combining and re-using two datasets may unintentionally expose participants.

[Aside: Research Bites readers might also be interested in this write up of the Sharing Qualitative Data workshop, from April 2017]

Consent

There is a need to potential reuse of the data generated in your research at an early stage. Ideally, participants will be fully informed of the potential reuse of the research data on the information sheet which is available before they are asked to consent.

You might also find this guidance on writing Data Management Plans useful.

It was acknowledged during the session that best practice in data management includes planning for re-use and sharing of research data, and this should be done with consideration of the ethical implications of doing so.

Example questions

Every question is better understood the full context of the research being proposed, so please seek advice from your Faculty Research Ethics Committee key contacts if you have questions.

It is helpful to the committee to supply any supporting information such to highlight any issues, and help them to understand how you have considered them.

Can I include Terms & Conditions of online platforms (e.g. Twitter) in an ethics application?

Does  it make a difference if the platform is open or closed?

How can I gain consent from people unable to read, in other languages, or from people of different cultures?

Can I re-use data from news or published sources? This is considered as ‘the literature’, so yes, but if in doubt, ask!

Do I need ethical approval if I’m using data from leaked documents in my research? Yes!

Lancaster Data Conversations: data security and confidentiality, Thursday 4th May 2017

Readers may also be interested in Lancaster Data Conversations this week on the topic of data security and confidentiality.

 

 

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