Why the Title “Lost in Translation?”

The title of this blog derives from that of my book on the ethics of human gene transfer research, which is contracted with Cambridge University Press.

As the title suggests, the translation of gene transfer into clinical application has not gone as smoothly as predicted.  The word "lost" is not intended to suggest incompetence, or blanket moral culpability on the part of gene transfer researchers, nor to disparage the field in particular.  My thesis is that nearly all parties to gene transfer research– ethicists, patient advocates, members of the public, news organizations, policy-makers, and researchers– have in a sense been lost in appreciating the distinctive ethical, policy, social, and scientific challenges in making gene transfer a reality.

There's another way in which the title is intended.  Many of the ethical frameworks and principles for evaluating human experiments were derived with randomized controlled trials in mind.  These concepts often apply awkwardly to the setting of the highly technical first-in-human experiment. In a sense then, the research ethics has been lost in translating approaches from the controlled clinical trial to the exploratory, early phase human study.