Issues regarding ethicsapplication for anongoing PhD project

Abstract

In this presentation, I will talk about the ongoing research ethics application for my PhD project entitled ‘A Discursive Approach to Genetic Literacy in Personal Genetic Testing in Hong Kong’. The application process is fraught with confusion and difficulties and I would like to invite discussion and feedback from the audience. There are three issues that I am particularly concerned about, namely, 1) cooperation with commercial companies; 2) protection of vulnerable subjects; 3) preserving disciplinary identity in interdisciplinaryresearch. A problem underlying collaborative projects involving commercial companies is the potential risk of being interpreted as helping companies to attract consumers. As a research postgraduate, I am challenged withshowing the relevance of my work to both the general publicandgenetic testing companies. Part of my research involves interviews with companies providing genetic services to the general public, and I am not clear about whether a company should be treated as an institution or as a human participant who requires informed consent. Another important concern in my research is the treatment of vulnerable subjects including pregnant women and individuals who are at increased risk of developing genetic-related health conditions. How to ensure adequate protection of the psychical and psychological well-being of these vulnerablesubjects requires in-depth discussion. The final issue I want to discuss relates to the question of how researchers from a linguistic background can preserve their disciplinary identity while contributing expertise to cross-sector research transcending the boundaries of linguistics, social sciences and biomedical science.