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.

 

 

What’s the Difference? Ethics at Lancaster University – Common themes and FAQs

ethics
Original Image: http://www.thebluediamondgallery.com/wooden-tile/e/ethics.html (Image credit: Nick Youngson – http://nyphotographic.com/ CC BY-SA 3.0)

 

It was great to welcome back Becky Case, Debbie Knight and Diane Hopkins for more on research ethics following their previous Research Bites session on the Ethics approval process at Lancaster University.

The ethical mindset

When considering ethics the first question researchers ask is: “Can I do X?” .  The short answer is always:  YES – if it is ethical.  Is what you are trying to do morally justifiable for your research goals?

This question should be at the heart of every research proposal; the ethics committee are looking for an ethical mindset.  Consider the following questions:

  • Are you trying to do good and trying to avoid doing harm?
  • How are you dealing with personal data that has been freely given?
  • Are you respecting that data?

Conduct your research with an ethical mindset

Almost all ethical issues have to be dealt with on a case-by-case basis but there are some themes which are common to many research projects.

Anonymity vs confidentiality

There is sometimes confusion between what is meant by “anonymised” and “confidential”.

Anonymity

Asserting that data will be anonymised means that individuals cannot be identified from the data.  You will be expected to anonymise data and make it clear to people what it is you are going to do.  Bear in mind however that some data is hard/impossible to anonymise. Also be aware that there are some people do not want their data anonymised.

Confidentiality

Confidential is a very difficult concept – people have different ideas about what this means. The lay person is likely to understand this as not sharing the data with anyone.  This would preclude sharing the research in any way.  The academic may understand confidentiality as capable of being shared with an academic audience or that the data can be shared if it is anonymous.

  • There are limits to confidentiality as in some areas there might be a statutory obligation to report information, especially where there is a duty of care.
  • Do not promise things which cannot be honoured.
  • Ensure participants understand what is going to happen to their data – good communication is vital!

Researcher vs counsellor

There is a fundamental difference between being a researcher and being a counsellor.

When conducting interviews with people, ask yourself the question:

What would you do in the event that people become upset?

The natural human response is not always the correct ethical response – your role is as a researchers not a counsellor and this should not be undertaken unless you are qualified to do so.  There is guidance available on safeguarding issues and you should be aware of these when dealing with potentially complex issues.

Informed consent

This is key to a good ethical approach.  It can be written or verbal.

There are several considerations relating to participation/non-participation which need to be made explicit at the outset:

  • What will happens to the and their data at the end of the project?
  • What happens if the participant changes their minds about taking part in the project?
  • What will happen to their data in this scenario?

You need to be able to show that you have considered all of this when planning your project and method of gathering data eg via forms, tick boxes etc.

Paying for participation

Paying people for participation is acceptable depending on the circumstances.  It is reasonable to pay travel expenses or as a thank you but it must not be used coercively. For example if a person decides to withdraw from the project they cannot be “threatened” with non-payment.

Bear in mind:

  • the effect of payment on benefit claimants.
  • working overseas a small amount of money here can be a significant sum.

Consent

Assessing vulnerability is not always easy – some people may be vulnerable at certain times and not at others.  Focus on capacity to consent.

Vulnerable vs non-vulnerable

You do not necessarily need parental consent for children to take part but it is vital that no-one, child or adult, is coerced into taking part in research.  Often the context in which the research takes place is key – children in a classroom. a dementia sufferer with their family etc.

Determining capacity to consent

The ethics committee will be looking for a description of how you are going to determine capacity to consent.  Do not make claims involving clinical judgements about people if you are not qualified or able to make them.   Do not assume consent to take part is a one-off process and it must be easy for participants to withdraw if they change their mind.

Widening participation

This should be balanced against the need to widen participation in research. Because of perceptions of vulnerability certain groups eg those with disabilities are often excluded from research.  This negatively affects outcomes and participation.

Consent forms

There are templates for consent forms if you are having trouble getting started on lots of help available on the sorts of things you should be putting on the consent form.
The consent form is vital and protects the researcher as much as the participant.

Questions

There were various questions raised after the presentation including around

  • Retrospective ethical approval
  • Research with children as participants
  • The role of researcher vs teacher
  • The use of human tissue samples

 

Ethics is not about getting in the way of research its about informing and facilitating!

If in doubt – get in touch with the Research Ethics Officers!