Ethical Issues in Long Term Cohort Studies

Poster A30, Monday, October 8, 11:30 am - 1:00 pm, Essex Ballroom

Donal O'Keeffe1,2, Felicity Fanning1, Roisin Doyle1, Kevin Madigan3,4, Elizabeth Lawlor1, Ann Sheridan5, Aine Kelly6, Mary Clarke1,5; 1DETECT Early Intervention in Psychosis Service, Dublin, Ireland, 2Trinity College Dublin, Dublin, Ireland, 3Saint John of God Community Services, Dublin, Ireland, 4Royal College of Surgeons in Ireland, Dublin, Ireland, 5University College Dublin, Dublin, Ireland, 6Saint John of God Hospitaller Services, Dublin, Ireland

Purpose: Long term clinical observational studies are a valuable source of information about the course and outcome of a disorder. Study procedures such as tracing and the use of historically collected data raise a number of ethical issues. Material and methods: In this paper, we report on ethical considerations that arose during a 20 year follow up of a first episode psychosis cohort. Results: Consent procedures have become more sophisticated over the last 20 years and consent taken historically could not have anticipated the many potential uses/courses that a research study can take. In that regard, a layered consent procedure is a good development. Tracing (over such a long period) needs to be carefully planned so that information regarding a person’s previous history and diagnosis remains confidential during the tracing procedure. Conclusions: Ethical concerns in such studies often relate to the obligations of health professionals to acquire and apply scientific knowledge—ultimately aimed at improving the outcome of a condition—while respecting individual rights. Potential societal benefits must be balanced with risks and potential harms to individuals; such as the potential for stigmatization or invasions of privacy. Minimizing risks and potential harms and maximizing potential benefits are particularly important in epidemiologic studies of populations who may be difficult to engage in research or considered vulnerable.

Topic Area: Ethical Issues

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