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MDX legal expert drafts data governance framework for massive global partnership tackling COVID-19

The ACT-Accelerator Partnership is a major international collaboration to produce, develop and provide fair access to COVID-19 tests, treatments and vaccines

A Middlesex University legal expert has drafted a framework for how personal data is used in a massive global partnership fighting against COVID-19.

Dr Ciara Staunton, a Senior Lecturer in Law, led the development of a data governance framework for the ACT-Accelerator Partnership which is a ground breaking international collaboration to accelerate development, production, and equitable access to coronavirus tests, treatments, and vaccines.

Launched by the World Health Organisation (WHO) in April last year, it brings together governments, scientists, businesses, civil society, and philanthropists and global health organisations including the Bill & Melinda Gates Foundation, CEPI, FIND, Gavi, The Global Fund, Unitaid, Wellcome   Trust and the World Bank.

“A pandemic is not a time when we should be derogating from human rights, but rather we must ensure that our rights are protected during this time," Dr Ciara Staunton, a Senior Lecturer in Law.

Before the coronavirus outbreak, Dr Staunton was awarded a research grant by the Wellcome Trust to examine the governance of health data sharing in Africa.

Dr Staunton, who specialises in the governance of stem cell research, genomic research and biobanking, was invited to create a living framework document for ACT-Accelerator partners which sets principles for the collection, use, storage, sharing and future use of personal data during COVID-19.

There have been concerns about how personal data is being used in the battle against coronavirus and the impact that it may have on the right to privacy.

In Singapore data collected as part of contact tracing - which 80% of residents had signed up to in January - may be turned over to the police, reports the BBC.

Dr Staunton said: “When we’re developing diagnostics, vaccines and therapies, a huge amount of personal data is used and we have to ensure there’s appropriate governance oversight in the use of this personal data and that it is used in a manner that respects our human rights.

“A pandemic is not a time when we should be derogating from human rights, but rather we must ensure that our rights are protected during this time.

“If I allow my data to be used in research, I wouldn’t want the police to have access to that data.

“Procedural frameworks are necessary to ensure that data collection is transparent, accountable, and that the data is going to be used for what is being stated.

“Accessing this personal data is important in our response to COVID-19 but we need to ensure that it is done in an manner that safeguards our rights and is not exploitative.”

Middlesex University legal academics Dr Joelle Grogan and Joshua Castellano provided substantial feedback on the drafting of the ACT-Accelerator data governance framework by their MDX colleague.

Dr Grogan said: “The invitation to Ciara to develop the global framework for the governance of personal data for the Access to COVID-19 Tools Accelerator is a significant indicator of both her international reputation for leadership in the field, and her strength in developing frameworks which bring principle to be applied in practice globally.

“In the development of COVID-19 treatments, including vaccines, which involves the use and transfer of personal data abidance by these principles is paramount.”

Read the Framework for the Governance of Personal Data for the Access to COVID-19 Tools Accelerator.

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