Ethical, Legal and Social Implications (ELSI) Research (R01 Clinical Trial Optional)

NIMHD supports applications that propose to study the ethical, legal and social implications (ELSI) of human genome research. Minority and populations experiencing health disparities are underrepresented in genomic research, especially with underrepresentation of people of non-European descent. Historical misuse of race and ethnicity data as population descriptors in genomics research has resulted in miscommunication of complex relationships between social identity, ancestry, socioeconomic status, and health, perpetuating misguided ideas and mistrust.

NIMHD supports projects that will advance the creation of guidelines and adoption of consensus practices for the use of race, ethnicity, social determinants of health, and ancestry data in study design, interpretation of results, publications, and medical care. Proposals should advance the use of self-identified race and ethnicity (SIRE) and ancestry informative markers (AIMs) to enhance the ability to describe research participants' diverse backgrounds and experiences in scientifically and socially meaningful ways in genomic research, genomic health care, and the broader societal, legal, and social arenas.

Applications must focus on one or more NIH-designated U.S. populations experiencing health disparities, which include Blacks/African Americans, Hispanics/Latinos, American Indians/Alaska Natives, Asian Americans, Native Hawaiians and other Pacific Islanders, socioeconomically disadvantaged populations, underserved rural populations, and sexual and gender minorities. Research may use available secondary data, health system data and/or collection of primary data.

NIH Guide No.: PAR-20-254

Page updated Jan. 12, 2024