Research in global health emergencies: ethical issues

Data and samples

See Chapter 9 of the full report

Sharing data and samples between research groups, or for further research purposes, can help maximise the benefits of research and in doing so, help reduce suffering. However, it may also raise concerns about possible harms and exploitation. The systems used for sharing data and samples need to be fair and trustworthy.

The role of individuals and communities regarding future use of data and samples

We identify a number of conditions that would help promote equitable and responsible sharing – in particular the development of local systems of governance that people can trust. These include:

• developing locally and culturally appropriate approaches to consent for future uses;
• establishing ‘access committees’ to decide what kinds of research can be done, and which researchers should have priority (this is particularly important for samples); and
• regular feedback and information for local communities about the research being done.

Action is needed over the longer term to develop such systems. Researchers also need support on what to do in the short term before these systems are fully developed.

We recommend:

• Funders and leading research institutions should prioritise further research with stakeholders in order to understand people’s concerns about the sharing of data and of samples for research use. Such research would provide a sound basis for the development of national or regional guidance, compatible with relevant national laws, to give a clear steer to researchers. National governments and intergovernmental agencies should support such initiatives as an essential part of emergency planning.
• When emergencies arise where there are no such systems in place, National Research Ethics Committees should take a leading role in deciding whether data and samples can be stored for possible future sharing; and how to involve communities appropriately in these decisions.
• Any future use of samples collected in past emergencies that are held without clear records of consent should be based on discussions with key stakeholders such as national governments, research leaders, and community representatives or survivors’ groups.
  
• In any future international collaborative research in emergencies, the existence and nature of sample collections should routinely be registered in a publicly accessible database.

Exploring professional and institutional barriers to sharing

Equitable sharing requires systems that give researchers in low-income environments the same opportunities as those in high-income environments to benefit from the data and samples that they have acquired themselves, and also from open sharing arrangements.

Responsible sharing includes ensuring that data and samples, once shared, are used to optimum effect to help reduce suffering.

We recommend:

• Journals should explore innovative ways of crediting significant input into research short of direct involvement in writing; and should consider publication policies that promote the inclusion of primary researchers in later re-analysis of their data.
• Funders should take a more active role in supporting the effective use of data and samples shared in repositories – for example finding ways to incentivise secondary analysis in response to identified needs.
• Funders should also find ways to require, and support, their grantees to share their research findings in accessible and timely ways with key policy stakeholders – not just through academic articles.