Consent for data sharing

Informed consent is an ethical requirement for most research and must be considered and implemented throughout the research lifecycle, from planning to publication to sharing.

Failure to properly address issues of consent may restrict the opportunities for initial use of data, the publishing of your results and the sharing of the data.

Overview
Informing participants

As part of informed consent procedures, it is important to tell participants about the purpose and benefits of sharing and archiving research data and making them available for future research, so the participant can take an informed decision. The following information can be used to explain this, with appropriate modifications for your research.

What is a data archive?

A data archive is a secure place where different types of materials are stored and looked after indefinitely. Most traditional archives deal with paper records, such as a local history archive. In the digital age many archives now hold electronic records. These demand different methods and skills to curate the materials to ensure that they can be used well into the future. The UK Data Archive houses several thousand datasets of interest to researchers, teachers and students who work in the social sciences or humanities, and makes this material available for use in research and learning.

Why put data in an archive?

For many participants of a research study, taking part is a way of getting their voices heard and of being listened to. Sharing their lives and stories in an in-depth interview is a way for them to have a say about topics that are important to them. Some people are happy to have their own names attributed to material they provide, while others prefer not to. Either way, providing 'voice' is an essential job for an archive.

A second reason to put materials in an archive is that it is impossible for researchers to learn everything they want to from data they collect at the time of their project. Because so many things can be learned from the data, preserving them means they can be shared with other researchers who will find the data useful now and for many years to come.

Another important reason to archive data is that some of the data have been provided by very hard-to-reach groups, politicians, the sick, the very elderly, the socially excluded or those who otherwise are not usually included in research projects. It is often very difficult and expensive to recruit such participants for research and, once they have contributed, it is important to make full use of the information they have given.

Lastly, archives are very good places to keep data safe and secure, providing the lasting evidence of published resaerch findings. Archivists are experts in backing up data, protecting them from viruses and more. They also specialise in looking after data to make sure they can still be used many years in the future when technology will be very different from today.

How do I know my data will be used ethically?

Putting data into an archive is not the same as making them available on the web. Archivists value the materials deposited with them and take their duty very seriously to make sure the materials are used only in appropriate ways. Their primary concern is to protect research participants. To that end, there are three strategies for protecting data. The first is to gain informed consent from participants to share data; the second is to anonymise the data; and the third is to control access to the data, via licensing. In almost every archive, some data will be available to the public, some will be covered by a standard licence, some need special permission, and some data are made unavailable for a lengthy period.

What does anonymising mean?

This means removing anything that could identify a participant or anyone talked about in the data. Good examples are names of people and places. In archives, personal contact details are never made available. Examples would include things such as addresses, telephone numbers or email addresses. Here is an example of anonymising some real names:

Original text
Anonymised text
Schools e.g. St John's Primary School Local secondary school or chosen made up name
Businesses e.g. McDonald's Fast food outlet/restaurant or chosen made up name
Family and friends' names e.g. Auntie Betty Changed to Aunt or pseudonym

How might data be used?

Data can be used in many ways. For example, one well-known collection known as The Edwardians, which interviewed 450 older people born before 1918, has been used to study topics as different as men's roles in family meal preparation, and how young civilian soldiers survived trench warfare on the Western Front by drawing on the emotional and practical support of their families.

Archived data may also be used by researchers, to compare with their own materials; by teachers, for use in their courses; and by journalists and policymakers. Others may be interested in how the research was done, e.g. how questions were asked. Of course, it is almost impossible to predict all the ways that data might be used. Past examples have shown that users are very creative in looking at data in very new and innovative ways.

Who owns the data and what is copyright?

If you are asked to sign a copyright statement this means that the person asking will have the legal right to use your contributions on agreed terms. For example, they can publish an article on the research which may quote some of your words. A researcher can further sign a licence with an archive that allows the archive to legally distribute the material to bona fide researchers, under the conditions agreed by the researcher.

How do archives store my data safely?

In many archives, data are stored in conditions that meet national and international standards - temperature, security and so on. They will have licences and access controls to ensure that only authorised and registered users can get hold of data. Because sharing your data can be done safely and because there are so many benefits, we hope you will agree to archive your data.

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