Charting ELSI’s future course: lessons from the recent past

Abstract

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.

Funding and Forums for ELSI Research: Who (or What) Is Setting the Agenda?

“…This way of categorizing ELSI work may serve to demarcate methodologies, as well as to indicate appreciation for concerns about moving directly from what “is” the case to what “ought” to be the case 4. Elsewhere, we offer an expanded set of categories for classifying ELSI Research: social science study report , broader ELSI focus , ethics focus , other normative focus , and policy recommendation (Walker and Morrissey 2012). However, only the broader categories empirical and non-empirical were interestingly related to funding and forums.…”

“…Additional topics were added, and others collapsed, as necessary to effectively capture the literature included in our study. We offer a comprehensive list of 18 specific topics addressed within publications in our study elsewhere (Walker and Morrissey 2012). Here, we present data on the relationships between specific topics and sources of funding and publication forum 6…”

“…Elsewhere, we present an analysis of five types of ELSI research; a comprehensive list of the topics addressed in this literature; and information about the contributing authors’ fields of training (Walker and Morrissey 2012). Here, we provide data on the extent and nature of funding within ELSI research and the forums for dissemination of this research and their relation to the selection of topics and the adoption of empirical or non-empirical methods.…”

Bioethics Methods in the Ethical, Legal, and Social Implications of the Human Genome Project Literature

“…18 Here, we report on a qualitative content analysis of a random sample of ELSI articles and book chapters published between 2003-2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. While public funding of ELSI research in some ways raises the stakes regarding careful employment of ethical analysis, we aimed to encompass the diversity and depth of the field of ELSI ethics research regardless of funding source.…”

Grand challenge: ELSI in a changing global environment

“…ELSI should be more proactive in bridging the divide between science and other components of society, be it law, policy, other scientific fields or just the lay public in general. This is particularly important when one or more components of society encounters new and novel science of possible relevance (Walker and Morrisse, 2012). …”