As the era of personalized medicine emerges, important ethical and legal questions arise about how personal genetic testing information is managed and used. For example, how should genetic information be used, by whom, and who should have access to it? As a result, there is a lot of current research on the ethical, legal, and social implications (ELSI) of scientific and medical advances from genomic DNA research. Many nations have allocated resources toward addressing these areas, such as the National Institutes of Health (NIH) ELSI Program.
In the May 11 issue of Science, researchers working in ELSI related to genomics advances from several countries, initiated a program to facilitate research work on these issues more globally using a web-based platform designated as ELSI 2.0. The international ELSI "collaboratory" as it is described, is designed to enable research on the ethical, legal, and social implications of genomics to become more coordinated, responsive to societal needs, and better able to apply the research knowledge it generates at a global level" with a purpose to "accelerate the translation of ELIS research findings into practice and policy."
The hope is that the web-based infrastructure with enable researchers from around the world to build off of more diverse research work, connect with other scholars, expand study and participant groups, access a broader range of research tools, and conduct more diverse studies. It is estimated the project will require about $2 million per year for the first 2-3 years to establish. Currently, they are inviting interested individuals to participate and access the open source tools that are currently available as a pilot program.