Published: March 2019
The framework has been informed by the backgrounds of the writers, literature reviews, and discussions both with health and medical research charities and experts within the digital/data ethics field. It reflects the standards of the current day and should be viewed as guidance on how health and medical research charities can develop and deploy ethics within their work. As such, both this framework and the accompanying piece, ‘Navigating the Digital Health Ethics Landscape: Questions for charities to ask digital technology company partners’, are live documents which should be regularly reviewed and updated.
We reviewed ethical principles and codes across five domains which are relevant for health and medical research charities working on digital health. These are: biomedical research; technology and data; non-profit sector; public health; and partnering within the UK system. By providing a base set of nine ethical principles, charities can discover and discuss potential ethical concerns with any partnership or project. It is important to note that these dependent on the context in which they are applied, these principals may be in direct contradiction of each other, for example individual autonomy may be overridden by the need for wider benefits to society. Depending on the application to real cases, it can be expected that the importance and alignment of principles can change.
Finally, the development of this framework is only the beginning of the journey to enact ethical practices. It will need to be discussed and accepted within charities by the people they work with, volunteers and staff. This requires raising awareness of what your ethical principles are and setting lines of accountability to encourage all stakeholders to make active use of them. When internal agreement and methods for implementation have been established, it is important that these principles are communicated within tech company partnerships. The set of questions to ask tech companies that were developed alongside the principles can act as a guide to assess prospective partners and to set expectations on how work should be delivered.