Box 5 Ethical, Legal and Social Implications (ELSI)
National Human Genome Research Institute
National Institutes of Health U.S. Department of Health and Human Services
Box 5 Ethical, legal and social implications (ELSI)
Today's genomics research and applications rest on more than a decade of valuable investigation into their ethical, legal and social implications. As the application of genomics to health increases along with its social impact, it becomes ever more important to expand on this work. There is an increasing need for focused ELSI research that directly informs policies and practices. One can envisage a flowering of 'translational ELSI research' that builds on the knowledge gained from prior and forthcoming 'basic ELSI research', which would provide knowledge for direct use by researchers, clinicians, policy-makers and the public. Examples include:
The development of models of genomics research that use attention to these ELSI issues for enhancing the research, rather than viewing such issues as impediments.
The continued development of appropriate and effective genomics research methods and policies that promote the highest levels of science and of protecting human subjects.
The establishment of crosscutting tools, analogous to the publicly accessible genomic maps and sequence databases that have accelerated other genomics research (examples of such tools might include searchable databases of genomic legislation and policies from around the world, or studies of ELSI aspects of introducing clinical genetic tests).
The evaluation of new genetic and genomic tests and technologies, and effective oversight of their implementation, to ensure that only those with confirmed clinical validity are used for patient care.