The ethics of emergent knowledge intermediaries

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health centre

By Paula Boddington, Hertford College, Oxford University

[Editor's note: This blog is the final in the FHS blog series Exploring the Implications of New Technologies for the Self-Management of Illness]

The use of new knowledge intermediaries in the public health sphere gives rise to a host of ethical issues. These include questions about fairness of access; the quality of the technology used and information generated; who has access to and control of such information; the impact of commercial interests within a healthcare setting; and regulation across borders. How do we address all of these from within our current frameworks of ethical thinking in medicine? In fact, can we?

Medical ethics has historically focused on the interactions between professionals and individual patients. It has thus been concerned with the professional’s role and responsibilities, ways of minimising harms and maximising benefit to the patient, and respect for the patients' rights. These questions make sense within an ethical framework focusing on the patient-doctor diagnoses and treatment model. But with the use of new technologies for the self-management of illness, the traditional model of medical ethics is beginning to flounder.

The current model of medical ethics has of course developed over time and in relation to changes within the health system it scrutinizes. It currently faces challenges from many quarters, including the following points of strain:

The model focuses on discrete interactions between a professional and an individual patient. Challenges then arise, e.g. with genetics, where the nature of genetic information means that the patient’s information may be relevant to biological relations.

• There has been an implicit assumption that standard treatment consists of intervention for a condition which is then cured, with less attention then on chronic conditions and long-term care. This is a bigger challenge now that the burden of disease is shifting towards long term conditions.
• There has been a focus on medical care, rather than on public health (although there has been more work on ethical issues in public health in recent years), and as Slim Slama pointed out in his blog, a focus on disease rather than social and personal aspects of health and illness.
• There has been a focus on consent to treatment, and on patient confidentiality. Behind both of these lies an implicit model of information-giving and of action. Crudely, the professional is the agent, the patient the one upon whom actions are performed; the professional has the medical knowledge, the patient receives this; and all this within a limited time frame, in an enclosed informational setting.

Self-management of chronic illness challenges the old model of medical ethics in a myriad ways. The patient may become an expert about their own disease. Indeed, ‘the patient’ is not someone undergoing a discrete episode of illness, but more manifestly is a person living a whole life, connected to a community of others.

Furthermore, the use of technology to manage illness means that information is no longer primarily in the hands of a medical professional, but is dissipated across a much larger system, including commercial interests. Medical agency is dissipated to the patient, as technology can assist and enable them to manage and make decisions about their own condition without reliance on a doctor. In fact a professional may have taken no direct part at all in the process.

New technologies may offer highly effective means of providing both tailored and general health information. But with this, there are also many hazards in trying to provide adequate education and real understanding. In short, it is no longer just in the standard ‘medical encounter’ within which ethical issues arise and are addressed. Technology may help potentially billions of people to manage chronic conditions, but new medical ethics needs to consider the much more dissipated agency and fragmented information that it brings.

Interestingly, the problems now facing the traditional model of medical ethics, even within a standard clinical setting, are often remarkably similar to those faced by widespread use of technologies within a public health sphere. For example, there is a growing realisation that drug regimes prescribed are, overwhelmingly, adhered to only very poorly. It’s become clear that problems with communication between provider and patient impede delivery of effective treatments that the patient both wants and can manage effectively. Hence, addressing these issues of understanding and communication is an essential key to improving healthcare, even when there is apparently close interaction between provider and individual patient. Part of the answer might involve the use of technologies, including those which help to advance the patient’s understanding of medicine.

Medical information is now increasingly shared in both formal and informal markets. We need to understand fully how such information is controlled and accessed, whether it be by medical and research professionals, commercial interests, or by patient groups. With such dissipated agency and diffuse systems of information, circumscribed systems of medical ethics with clearly articulated professional roles and responsibilities are no longer going to apply. Ethical ways forward will involve making sure that the power to act, the power to know, and the power to understand is put firmly in the right hands those of the most vulnerable, and those needing care to manage health and illness.