In the spotlight - consent, it's not a new concept
For most researchers the issue of consent is not a new concept. Many are already well versed in
tackling or battling Ethics Committees. What is new, for some, is the requirement by funding organisations to
ensure that the resulting data is shared and made available for secondary
research, including statements in their application processes of the need to offer data for
deposit or archiving and the need to work with centres and services to overcome any issues
which may prevent that offer.
Informed consent is a complex area which must not be
considered in isolation - its partners, anonymisation and confidentiality also
have key roles in research planning, management and future archiving. Rich resources are often made
poorer by eager over-anonymisation when perhaps a more defined consent agreement may have
sufficed.
In order to support the researcher and to ensure that ESDS
continues to develop and build a collection of contemporary and exciting
research, we created a suite of pages paying particular attention to legal and
ethical issues. The pages strike a balance between providing comprehensive information in a
quick to use and easy to understand style and are innovative in that we also include exemplar consent
agreements, with the 'three click I'm there' reader in mind.
In working with research teams we are able to
provide these five examples covering issues of consent arising in a general
research project, to more complex issues involving the participation of
children. In addition, further links are included within the pages for special consent
issues: medical research; crime etc. and further reading which lists professional organisations ethical
guidelines. All can be viewed at the
following location:
http://www.data-archive.ac.uk/create-manage/consent-ethics/
The standard of materials being deposited has improved beyond recognition from "the
scrappy bits of paper we used to get" and there is no doubt that working with
researchers and grant applicants throughout the lifetime of their projects has
raised the standard of data management and enabled data usage.
We may still accept scrappy little bits of paper (although
we have a preference for electronic files) in extreme circumstances but it is
crucial that those bits of paper include the necessary legal and ethical
framework.
Susan Cadogan Senior Acquisitions Officer, ESDS
Article dated: 25 October 2006
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