Human challenge studies in the study of infectious diseases
What can deliberately infecting healthy people tell us about infectious diseases? How is this useful for developing treatments, and how do we manage the risks?
Our survey of over 1,100 experts asked them what their most important concerns were in the short (next 3 months), medium (next 3 to 9 months) and long-term (beyond the next 9 months) relating to the COVID-19 outbreak. Their responses were analysed and synthesised. This synthesis comes from survey responses submitted between 3 and 30 April. Experts raised 66 concerns relating to law and human rights. Below are the areas of concerns that experts have relating to this area.
Experts had over 30 concerns in the short and medium-term about the emergency powers granted to the Government in the Coronavirus Act 2020. They express concern that some of the powers available to the Government through the Act are incompatible with human rights legislation. Some experts suggest that the rights of children are being most affected. For example, during lockdown restrictions, most children are unable to associate with peers while some are living with neglect or abuse, are unable to receive an education or are separated from their families.
Experts suggest that limiting movement and preventing families from meeting breaches people’s expected civil liberties. They express concern that this will make these restrictions harder to enforce unless the justification is clear to the public. Experts also express concern that appropriate explanations were not provided by the Government for why it required all the powers granted under the Coronavirus Act 2020. They question how decisions were made about balancing public health risks and human rights.
In the medium-term, experts are concerned about how the Government will relinquish its emergency powers and when. They want to know what the legal safeguards are to ensure that the powers end at the right time.
In the long-term, some experts want to know how the use of emergency powers will be scrutinised to ensure they do not become the norm. Some suggest there should be an examination of how Coronavirus Act 2020 was developed and how powers were used. They suggest this would inform and improve the development of any future emergency legislation. Some experts are concerned about how the Government will control the pandemic after emergency powers end. They suggest that it will be difficult to react quickly if lockdowns are required in the future without the emergency legislation still in place. Other experts are concerned that long-term strategies to suppress the virus could be discriminatory and could breach the Equality Act 2010. For example, if there are different restrictions based on age, disability or whether a person has immunity, this be discriminatory. There are some concerns that, in the long-term, the Government could face litigation from people and businesses affected by the use of emergency powers. For example, some businesses may consider future financial difficulties to have been caused by the Government labelling them ‘non-essential’ and restricting their trading.
Example of a typical medium-term concern in this area: The government needs to ensure that those measures that were introduced during the pandemic are properly revoked and full human rights protection is ensured.
Over 30 concerns focus on the reduction of digital privacy in the COVID-19 outbreak. Digital privacy comprises people’s rights to control their personal data (information privacy), rights to communicate securely (communication privacy) and rights to control what information they see (individual privacy).
Experts express concern in the short-term that apps to track people coming into contact with infected people (contact tracing apps) could breach digital privacy legislation. They question whether privacy laws will be relaxed to allow a rollout of these apps. They also raise concerns that people may not trust contact tracing apps. If too few people download and use apps, a contact tracing scheme is likely to be ineffective. Therefore, experts want to know how the Government will build public trust in apps and how they will increase use. Some experts also suggest that sharing of medical data may pose data governance issues. They question how well-protected data on people infected will be.
Other concerns in the short-term include how large data-processing firms could use digital data (such as social media posts) during the COVID-19 outbreak. Experts suggest that using these data to track spread in the outbreak could breach people’s expected use of their data. Experts also express concern about a rise in the use of surveillance powers (such as police checking where people are going or the use of facial recognition technology). They are concerned that increased use of surveillance in the short-term may lead to normalisation of surveillance and greater privacy breaches in the long-term.
Experts also express concerns about the digital privacy of people working from home. For example, home workers may be expected by their company to video-call from home. This could constitute a breach of their rights to privacy. Some experts raise concerns about proper data governance being upheld by home workers. They note that people working remotely may have restricted access to mechanisms for safely storing personal data (such as business servers). They note that poor data governance by organisations would leave their users at greater risk of cybercrime.
Example of a typical short-term concern in this area: As an expert in AI [artificial intelligence]/data ethics, my concern is that data-driven AI tools for pandemic control may be launched without the necessary safeguards to secure public trust and compliance, if the transparency, justice and accountability measures needed to make these tools effective are not adequately considered.
You can read the methodology of this work here. All researchers who contributed to this survey are listed under Acknowledgements.
You can find rapid response content from POST on COVID-19 here.
You can find more content on COVID-19 from the Commons and Lords Libraries here.
What can deliberately infecting healthy people tell us about infectious diseases? How is this useful for developing treatments, and how do we manage the risks?
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