The ethics of data sharing

Coordinated data sharing maximises the utility of data, which is critical for the control of infectious diseases. Data sharing is imperative during pandemics and public health emergencies. For example, many of the major achievements towards the containment of COVID-19 are attributed to the rapid sharing of sequence data across the globe. This step highlights some ethical considerations regarding genomic data sharing with examples from HIV phylogenetics and COVID-19 and presents some mitigation strategies.

Risk to privacy

Data sharing is widely used in HIV phylogenetic analysis. Balancing the benefits of understanding HIV transmission dynamics with the potential risks of harm arising from an unintentional breach of personal privacy remains a major ethical consideration in HIV phylogenetics. Such concern is justified considering that each HIV sequence is associated with a human being. While sharing HIV genetic sequences facilitates HIV-related research, it may worsen the risk of inferential privacy loss. These concerns should be viewed within the context of HIV social stigma and criminalisation of HIV transmission, which pose severe risks of social harm to research participants in the event of inadvertent disclosure of personally traceable results.

Equitable data use and benefit sharing

Apart from potential risks of harm to individuals, there are ethical issues regarding the fair use of valuable data generated and shared by researchers from low to middle-income countries (LMICs). While their contributions might be acknowledged, the scientific benefits that accrue from the analysis of the sequence data might be inaccessible to the communities that contributed data towards that benefit (e.g. vaccines not being available to those communities). This results in mistrust and uneven vaccine access, as witnessed during the H5N1 outbreak and recently the COVID-19 pandemic. Furthermore, researchers based in LMICs should also receive appropriate credit for their contribution to eventual scientific publications.

Mitigation strategies

Several strategies can mitigate the risks posed by sharing pathogen genomic data. Before sharing, protocols for the deidentification or anonymisation of data are required. Only limited information should be published with each sequence, and additional information should be released using a strictly controlled access protocol. Controlled digital systems that facilitate collaboration instead of data sharing could be prioritised.

If data are to be released for research purposes, the study should meet the ethical principles outlined in the Emanuel Framework. Furthermore, researchers should comply fully with the information provided in the consent documents, which specify what and how data will be shared and reused unless otherwise authorised by local or international ethics guidelines. Material Transfer Agreements between institutions should also provide clear statements on benefit-sharing, especially how products from the research (e.g., therapeutics or vaccines) will be shared.

In conclusion, further ethical-legal scholarship (including empirical work) is warranted to determine an optimal ethical framework and a best practice model to guide HIV genetic data sharing and use, including for molecular HIV surveillance. Lessons learned (e.g., risk/benefit determinations) from such sharing during the COVID-19 pandemic should also be reviewed in this process.

Where do you stand on balancing data sharing with privacy and equity? Share your views in the comments