Toward decision-readiness for human germline gene editing:What if...
Abstract
The possibility of altering DNA in human embryos (human germline gene editing), raises many questions. Changes in the DNA of germline cells would be passed on to next generations, thereby affecting humans as a species. CRISPR, the technology that is most promising for altering the DNA of embryos, has the potential to eliminate severe genetic diseases. At the same time, this technology could be used for enhancement, by giving future children certain traits or characteristics that are desired by the parents. This raises a breadth of questions, such as “For which purposes, if any, should we allow this technology?”, “Would this technology be available for everyone, or only the rich?” and “How would we treat people who are born with a genetic disease, because their parents decided not to use the technology?”. These questions cannot be answered by scientists alone, as they concern so many people. Decision about how to deal with this technology will have to be aligned with societal values and needs, in order to prevent undesirable consequences. This askes for a research approach that aims for societal impact. Engaging the public and gaining insight into their opinions may lead to better informed decisions on the one hand, and more support for those decisions on the other hand. This thesis is about the role of scientists when it comes to potentially disruptive technologies such as human germline gene editing. It investigates how to organize inclusive public dialogue and how insights from dialogues can contribute to decision-readiness.
