Research Ethics Challenges Presentation title: Ethics, Governance & Personal Genomes – No Steady State

Ethics and governance have build an increasingly stable compact over the past decades. ELSI has gained robustness, however, at the cost of loss of flexibility and ability to adapt to the very fast progress in science. In addition, the possibilities of information and communication have changed dramatically over the past decade. “Democratization” of access to knowledge has given agency a new dimension. In my view, recent proposals for updating research ethics recommendations do not pay sufficient attention to the new agents and the forms that agency can take. One leading assumption is that based on consensual principles, governance structures can be created that will guarantee for a robust system of biomedical research ethics.

However, in this presentation I will argue that such a top-down organized steady state of biomedical ethics will not be the most adequate model for keeping pace with science.

Personal genomes are one example: integrative genomics information about individuals has become increasingly available, the extensive sharing of data in the scientific community has raised many questions that remain to be answered. At the same time, individuals collect, share and potentially trade their personal genomes in the market place. These realities cannot be ignored when drafting models of governance, regulation, and ethics frameworks.

Dynamic systems are needed that can account for participatory models featuring reciprocity in research and network-based communication.

Today, research subjects are increasingly becoming agents and we should be careful not to keep stuck in the robustness of yesterday’s systems.