IRB: Ethics & Human Research

Consent for Future Genetic Research: The NHANES Experience in 2007–2008

We analyzed the characteristics of consenting individuals participating in the 2007–2008 data cycle of the National Health and Nutrition Examination Survey, a nationally representative survey of the U.S. population, to determine consent rates for nongenetic future research and genetic research. During this period, the consent rate for genetic research was 86%, whereas the consent rate for nongenetic research was 99.3% and never dropped below 98.2%. The overall consent rates for nongenetic and genetic research reveal that a significant majority of individuals agreed to provide biospecimens for future unspecified research—including genetic studies. However, consent rates for genetic research were lower for certain groups: for non-Hispanic black participants and those in the “other” racial/ethnic category compared with the rate for non-Hispanic whites; for younger participants (20–39) compared with older ones; and for individuals interviewed in English compared with those interviewed in Spanish.

Key words/concepts: human subjects research, informed consent to research, genetic research, storage of biospecimens, biobanking

Geraldine M. McQuillan and Kathryn S. Porter, “Consent for Future Genetic Research: The NHANES Experience in 2007–2008,” IRB: Ethics & Human Research 33, no. 1 (2011): 9-14.