The NIH will fund new research projects related to the ethical, legal, and social implications of genetic and genomic research, continuing a congressionally mandated program that was launched with the Human Genome Project in 1990.

Continuing a congressionally mandated program that originated with the Human Genome Project in 1990, the NIH announced in July that it will fund new studies aimed at anticipating, analyzing, and addressing the ethical, legal, and social implications of genetic and genomic research. The Ethical, Legal, and Social Implications (ELSI) grant program represents an effort to understand the impact of new technologies and the use of genetic information on individuals, communities, and society.

The agency invites applications for three different types of studies: small projects, such as those for a single investigator; exploratory projects that either extend previous discoveries or pursue new avenues of research; and “regular” research projects, which have no specified requirements. Small projects can be funded for up to $50,000 per year for up to 2 years; exploratory projects may be funded for a total of $275,000 spread over up to 2 years. Grants for regular research projects do not have a specific funding limit but should reflect the needs of the proposed project; these projects can receive funding for up to 5 years.

“We fund a lot of applications that look at issues in cancer research, particularly around BRCA1 and BRCA2 genetic testing,” says Joy Boyer, a social science analyst at the National Human Genome Research Institute in Bethesda, MD. She notes that funded studies in the past have examined issues such as how individuals respond to genetic testing, the best way to consent to testing, and how to provide results.

The rapid advance of genetic technology and genomics research has given rise to a wide variety of complex and evolving topics, including the informed consent process, the use of cell lines from biobanks that have not been consented for data sharing, the general public's perceptions of the risks and benefits of genomic research, and privacy and anonymity of genomic information.

Boyer says that through the ELSI grant program, the NIH wants to identify issues as they arise, generate data that can be used to inform the development of professional guidelines and policies, and ensure that health interventions built on genomic information are safe and effective.