Biobank research has undeniably challenged research ethics and the requirement for informed consent. We are after all dealing with collection of biological samples for future, yet unspecified research. Thus, one cannot give donors specific information about the research in which their samples will be used. It might seem like asking them to consent to unknown research projects x, y, z.
While some argue that broad consent for future research is specific enough to be genuine consent to something – one can inform about the framework that applies to the research – others argue that biobank research undermines the autonomy of research participants. Something must therefore be done about it.
Dynamic consent is such a proposed measure. The idea is that participants in biobank research, through a website, will be kept continuously informed about planned research, and continually make decisions about their participation. Through this IT measure, participants are placed at the center of decision making process rather than transferring all power to the researchers. Dynamic consent empowers research participants and supports their autonomy, it is claimed.
First, the authors argue that autonomy is misunderstood as a feat. Autonomy is rather a right people have to decide for themselves what to do in situations that matter to them.
Second, they argue that the concept of autonomy is used too broadly, hiding important distinctions. In fact, three different ways of respecting people are conflated:
- Autonomy: respecting people’s right to decide for themselves about what to do.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.