Background

Photographs are frequently used for diagnostic and training purposes and, increasingly, as research material. This DPhil project will explore stakeholders’ (patients/ their proxies, clinicians, researchers) views about the use of digital facial photographs for research purposes in the Minerva & Me project (Nellaker). Minerva & Me is crowd sourcing research project which aims to create a database of photographs of people with rare diseases, to be used in the development of  facial recognition software using machine learning algorithms. This phenotyping software is being developed for clinical use, to help narrow the search space for a correct diagnosis, and thus, shorten the diagnostic odyssey. Although it is well known that photographs have different moral and social significance in different cultural and social contexts little is known about the types of ethical and social issues raised by the use of photographic data in biomedical research.

The Minerva & Me project asks patients who have already obtained a diagnosis of rare disease to upload photographic data and diagnostic details. This DPhil project will investigate different stakeholders’ (patients, researchers and clinicians) perceptions of the ethical issues arising from the use of photographic material for biomedical purposes in general, and in research in particular. Using the Minerva & Me project as a case study, it will ask questions such as: what is an acceptable use of photographs in clinical and research situations and to what extent do the ethical concerns (e.g, privacy, confidentiality, consent to data sharing) generated by the use of photographic data differ from that of other types of biomedical and personal data, and, as Minerva & Me is an international project, to what extent do these views vary across different cultural contexts?

Research Experience, Research Methods and Training

The project and will contribute to the emerging field of empirical bioethics and will involve both ethical and social scientific methodologies. If the candidate does not have appropriate methods training they will be able to audit appropriate courses within the NDPH and the wider University.

Field Work, Secondments, Industry Placements and Training

Fieldwork (interviews with different stakeholder groups and other ethnographically informed observations) will take place in the UK and another international fieldwork sites depending upon the final research questions and goals.

Prospective Candidate

Sociology, Science and Technology Studies, or Medical Anthropology graduate with an interest in bioethics or philosophical ethics.

 

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Supervisors

Nina Hallowell

Senior Researcher

Nina Hallowell

Christoffer Nellåker

MRC Methodology Research Fellow

Christoffer Nellaker