Ethics & Open Data
In research with people there may be perceived tensions between data sharing and data protection, but the majority of research data - even sensitive data - can be shared ethically and legally if researchers employ strategies of informed consent, anonymisation and controlling access to data.
Ethics subject panels ensure that research projects gain ethical approval in order to safeguard researchers conducting the study and also protect the rights, safety, dignity and well-being of research participants.
The ethical reviews currently carried out assess the security and confidentiality of data, but in order to facilitate an open research environment, ethical reviews will need to take into consideration the ethics of data publication and sharing. Ethics reviews can play a critical role by providing information to researchers at the consent and planning stages on how to share data ethically. The following will need to be addressed in an ethical review if data sharing or publication is required:
- Ethical review forms should ask what plans there are for future data sharing
- Ethics Committees should consult the data management plan
- Consent forms used should allow for data sharing, whilst also protecting the confidentiality of participants
- It is important to distinguish between personal data and research data in general
- Data protection laws only apply to personal data, but they do not apply to anonymised data
- Identifiable information may be excluded from data sharing
- A combination of gaining consent for data sharing, anonymising data and controlling access to data can enable the ethical and legal sharing of data
Informed consent will also need to take into account the sharing, publication and preservation of data, and researchers will need to plan for informed consent and anonymization at a very early stage of the project.
Researchers obtaining data from people are expected to maintain high ethical standards and comply with the relevant legislation. Carrying out an assessment of disclosure risk can help to apply best practices of gaining consent, anonymising data and regulating access to enable data to be shared.
See Research Data Management webpage for more information