Ethical obligations

In the UK there is a ‘duty of confidentiality’ that is based in common law. This occurs when confidential information comes to the knowledge of a person in circumstances where it would be unfair for it to be disclosed to others. Some ethical issues are also enshrined in law.

It applies only to information not already in the public domain. If an explicit statement of agreement has been made on the extent of the confidentiality to be afforded to the provider of the information, for example, in a consent form, this may constitute a contract.

This need not be in writing. Disclosure of information subject to such a confidentiality agreement would constitute a breach of the duty of confidentiality and possibly a breach of contract.

The duty of confidentiality is not absolute and is not protected by legal privilege. Exceptions occur when:

• The informant has consented to the information being used in specific ways, for agreed purposes, and by certain people.

• Researchers may be required to give up research data in response to a court subpoena, or to the police as part of an on-going investigation.

Researchers who are required to share their research data should ask for participants’ consent to share data under agreed terms and conditions, with anonymisation if necessary.

There are also ethical obligations on researchers working with children to make provision for the required actions to be taken in cases of disclosure of child abuse.

There are exceptions to the duty of confidentiality where there is a legal compulsion, for example, if information is subpoenaed by police investigations or court proceedings, or the disclosure of information needs to be made ‘in the public interest’, as defined by the courts.

There are no mandatory reporting laws in the UK, however guidance issued by professional bodies and Local Safeguarding Children Boards emphasises that a referral should be made where there is a reasonable belief that a child is at risk of significant harm.

This places ethical obligations on researchers who work with children to make provision for the required actions to be taken in cases of disclosure of information related to, for example, child abuse.

Under the Children Act 1989 (England and Wales), the Children (Scotland) Act 1995 and the Children (Northern Ireland) Order 1995, the local authority has a duty to make enquiries about any allegation of abuse of children (for those who are suffering, or who are likely to suffer, significant harm).

There are also instances where legislation requires reporting, such as under the Terrorism Act, when a member of the public is informed of a planned terrorist attack. Additionally, some researchers are members of professional groups, such as teachers and social workers, who have a legal duty to report suspected child abuse.

For more information, the international project on Ethical Research Involving Children is a comprehensive resource.

Every academic discipline has its own tailored guidelines produced by professional bodies and relevant funding organisations. For example, the UK’s core funder of social science research, the Economic and Social Research Council (ESRC), outlines six key principles for UK social science research ethics as listed below.

Source: ESRC Framework for research ethics

Our six key principles for ethical research are:

• Research should aim to maximise benefit for individuals and society and minimise risk and harm.
• The rights and dignity of individuals and groups should be respected.
• Wherever possible, participation should be voluntary and appropriately informed.
• Research should be conducted with integrity and transparency.
• Lines of responsibility and accountability should be clearly defined.
• Independence of research should be maintained and where conflicts of interest cannot be avoided they should be made explicit.

Many funders and professional bodies publish their own disciplinary codes of conduct that cover ethical principles. Unfortunately, many still fail to cover issues around handling research data, and more specifically data sharing.

Worse, some may recommend the destruction of research data after a research project ends. In this respect, they are failing the open science agenda. It can be difficult for the researcher to know how to do research with integrity, when they are faced with the dilemma of data sharing mandates from their funder and data destruction recommendations from their professional body.

Below are links to ethical guidelines from other key research bodies:

• British Sociological Association (BSA) Statement of Ethical Practice. (PDF)
• Ethical guidelines from the Social Research Association.
• Ethical guidelines from the Oral History Society.
• Ethics guide from the Association of Internet Researchers.
• Methodological Issues in Qualitative Data Sharing and Archiving.
• Framework for Research Ethics from the Economic and Social Research Council.
• The Research Ethics Guidebook: a resource for social scientists RDI project, section on consent for archiving & sharing.

In research with people there may be a perceived tension between data sharing and data protection. Research Ethics Committees (RECs) can play a role in advising researchers how their data can be shared and made available for reuse, while upholding data protection and research ethics principles.

The role of RECs is to protect the safety, rights and well-being of research participants and to promote ethically sound research. Among other duties, this involves ensuring that research complies with the Data Protection Act 2018 regarding the use of personal information collected in research.

RECs can play a mediating role in reconciling data sharing and data protection, so make sure that your institution’s ethical review procedures take data sharing and data publishing into consideration:

• Many research funders and journals expect or require data sharing (data to be made available in an archive or repository).
• Ethical review forms should ask whether there are plans for future data sharing.
• Ethical review board should consult the data management plan.
• Consent forms used should allow for data sharing, whilst also protecting the confidentiality of participants; even sensitive data can be shared if suitable procedures and precautions are taken, as is done at major data centres.
• Most research data obtained from participants can be successfully shared without breaching confidentiality.
• 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.

RECs play a critical role by providing information to researchers at the consent and planning stages on how to share data ethically.

Contact us for advice when unsure how to address the sharing of research data as part of an ethical review process, or if a conflict exists between the need to archive data and an REC’s recommendations on data management.