Examining public views on decentralised health data sharing.

In recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health data sharing contexts. However, there is a significant lack of research that examines public attitudes towards the use of this technology. In this paper, we begin to address this issue and present results from a series of focus groups which explored public views and concerns about engaging with new models of personal health data sharing in the UK. We found that participants were broadly in favour of a shift towards new decentralised models of data sharing. Retaining 'proof' of health information stored about patients and the capacity to provide permanent audit trails, enabled by immutable and transparent properties of DLT, were regarded as particularly valuable for our participants and prospective data custodians. Participants also identified other potential benefits such as supporting people to become more health data literate and enabling patients to make informed decisions about how their data was shared and with whom. However, participants also voiced concerns about the potential to further exacerbate existing health and digital inequalities. Participants were also apprehensive about the removal of intermediaries in the design of personal health informatics systems.

Non-Fungible Tokens as a Mechanism for Representing Patient Consent.

In recent years we have seen the adoption of distributed ledger technology (DLT), originally the mechanism underpinning the operation of the Bitcoin crypto currency, across a wider range of technology sectors including healthcare. DLT allows for the design of informatics systems with the properties of immutability, security, and decentralization. One recent innovation in the space has been the specification and development of Non-Fungible Tokens (NFTs). NFTs are decentralized DLT-based records that represent ownership of a unique digital asset. The predominant current use case for NFTs has been in the representation and sale of digital artwork, however the features offered by NFTs, unique-ness, immutability, transferability, and verifiability, are directly applicable to the design of health informatics systems. In this paper we explore these properties and describe a reference architecture for using NFTs as a means of representing and transferring records of patient's consent for medical data use.

Healthcare Professional Standards in Pandemic Conditions: The Duty to Obtain Consent to Treatment.

In the United Kingdom, the question of how much information is required to be given to patients about the benefits and risks of proposed treatment remains extant. Issues about whether healthcare resources can accommodate extended shared decision-making processes are yet to be resolved. COVID-19 has now stepped into this arena of uncertainty, adding more complexity. U.K. public health responses to the pandemic raise important questions about professional standards regarding how the obtaining and recording of consent might change or be maintained in such emergency conditions, particularly in settings where equipment, medicines, and appropriately trained or specialized staff are in short supply. Such conditions have important implications for the professional capacity and knowledge available to discuss the risks and benefits of and alternatives to proposed treatment with patients. The government's drive to expedite the recruitment to wards of medical students nearing the end of their studies, as well as inviting retired practitioners back into practice, raises questions about the ability of such healthcare providers to engage fully in shared decision-making.This article explores whether the legal duty on healthcare practitioners to disclose the material risks of a proposed medical treatment to a patient should be upheld during pandemic conditions or whether the pre-eminence of patient autonomy should be partly sacrificed in such exceptional circumstances. We argue that measures to protect public health and to respect autonomous decision-making are not mutually exclusive and that there are good reasons to maintain professional standards in obtaining consent to treatment even during acute pressures on public health systems.

The Transmutation of Deference in Medicine: An Ethico-Legal Perspective.

This article critically considers the question of whether an increase in legal recognition of patient autonomy culminating in the decision of the Supreme Court in Montgomery v Lanarkshire Health Board in 2015 has led to the death of deference to doctors, not only within the courts and healthcare regulatory arenas in England and Wales but also in the consulting room and the health care system more broadly. We argue that deference has not been eradicated, but that the types of deference paid to doctors and to the medical profession have changed. In addition, whilst traditionally deference was extended towards the medical profession, increasing instances of deference being shown to other parties in the healthcare setting can be identified, allowing wider debate or recognition of the complexity of understandings, interests and aims of all those involved. Finally, we note instances in which deference to the medical profession has become more hidden.

Rewards and incentives for the provision of human tissue for research.

The Nuffield Council on Bioethics' 2011 report, Human Bodies: Donation for Medicine and Research, proposes a system for examining the ethical implications of different types of incentives for the provision of human tissue for use in medicine and research. The cornerstone of this system is the principle of altruism which, the Council recommends, should, where possible, remain the starting point for any such tissue provision. Using the Council's example of ova provision for research as an area in which altruism-based rewards might be departed from, this article argues that such a system has the potential to become inconsistent and unnecessarily complex. It suggests that the outcomes-focussed and motivations-focussed justifications the Council provides do not sit easily within the fast-paced and unpredictable area of biotechnology research. Further, it may undermine the focus on autonomy that is enshrined in the relevant legislation. This article suggests that a fair system for incentivising and rewarding the provision of human tissue in research should be developed, which focuses on elements of this role that are common to all tissue providers.