Anna was invited to present during the session "Research ethics in participant-centered genomic research initiatives: return of results," chaired by Pascal Borry, due to her work on attitudes towards incidental findings on the GenomEthics study. Also presenting during this session were Leigh Jackson (Plymouth University), Regine Kolleck (University of Hamburg) and Martina Cornel (VU University Medical Center Amsterdam)
Specific goals of the symposium
The research basis for this symposium is that tensions and possible discrepancies exist between participant-centred research initiatives and ethical principles outlined for traditional research on human genomic data.
The general objective of the proposed meeting is to explore different types of participant- centred research models and their potential benefits and drawbacks, including ethical aspects, as compared to the more traditional research paradigm. Through the study and discussion of the ethical problems related to participant-centred research models, we aim to begin to map out the novel aspects of this research model and begin to elucidate the salient issues with respect to consent and return of results. Ultimately we aim to write an academic research article covering these themes which will be published in an international peer- reviewed journal.
During this symposium we will address specific objectives:
1) To identify various participant-centred research initiatives in genomics (PCRI) and to map and analyze their different features
2) To explore the traditional research ethics principle of consent and compare this in the context of patient-centred initiatives in genomics.
Middleton A (2015) Return of results in participant-centred genomic research. Invited presentation at the Brocher Foundation. Ethical aspects of participant-centred research initiatives. HC Howard, E Vayena, P Borry. Geneva 1-2 October.