Purpose: We sought to examine the ethical, legal, and social implications
(ELSI) literature research and scholarship types, topics, and
contributing community fields of training as a first step to charting
the broader ELSI community’s future priorities and goals.
Methods: We categorized 642 articles and book chapters meeting
inclusion criteria for content in both human genetics or genomics
and ethics or ELSI during a 5-year period (2003–2008) according
to research and scholarship types, topics, and the area of advanced
training of the first-listed author. Research and scholarship type categories
were developed and characterized through in-depth review of
95 randomly sampled publications from the larger group.
Results: There is a single dominant approach to ELSI, which focuses
on ethical and other social issues “downstream” of advances in
genomics, the contributors to which predominately have advanced
training in medicine or science fields other than social science.
A comparatively low percentage of publications primarily offer policy
recommendations, and these are much more likely to be written by
those with advanced training in law than is the case for the literature
as a whole. Social science studies predominately employ qualitative
methods and vary significantly with respect to the extent and types
of recommendations offered. Two further types of ELSI research and
scholarship offer alternative models for so-called “normative” work
in this field.
Conclusion: Considering topics, training, and types of ELSI research
and scholarship from the most recent past allows for a baseline perspective
that is sorely needed in charting this field’s future course.