Consent for genetic research in a general population: The NHANES experience

Abstract

consented. Females and black participants in both years were least likely to consent (1999, 82.2% and 73.2%; 2000, 83.6% and 81.3%, respectively). An assessment by logistic regression demonstrated that in both years only non-Hispanic black race/ethnicity was a significant independent predictor for not consenting to future genetic research. Conclusion: Although non-Hispanic black individuals have overall response rates similar to those of the other racial/ethnic groups, they are less likely to agree to have a blood sample saved for future genetic research.In balance, however, these findings demonstrate wide acceptance among survey participants for allowing storage of specimens for future genetic research across many demographic variables. Genet Med 2003:5(1):35-42.

Genetic research participation in a young adult community sample

“…The findings of the effects of ethnicity, gender, and education on obtaining a DNA sample have been contradictory in the literature (Kozlowski et al 2002;Nishita et al 2009). Often, participation rates of minority groups are lower than other racial/ethnic groups (Chen et al 2005;Kozlowski et al 2002;McQuillan et al 2003;Meisel et al 2012), but we did not detect any racial/ethnicity or gender differences within our study sample. On the other hand, as seen in this cohort, African Americans have been found to be less likely to grant permission to save and share their samples in the future with other investigators (Mezuk et al 2008;McQuillan et al 2003McQuillan et al , 2006.…”

“…Often, participation rates of minority groups are lower than other racial/ethnic groups (Chen et al 2005;Kozlowski et al 2002;McQuillan et al 2003;Meisel et al 2012), but we did not detect any racial/ethnicity or gender differences within our study sample. On the other hand, as seen in this cohort, African Americans have been found to be less likely to grant permission to save and share their samples in the future with other investigators (Mezuk et al 2008;McQuillan et al 2003McQuillan et al , 2006. As for education, a surprising finding was that education was associated with the type of sample provided but not associated with the likelihood of providing a sample.…”

“…Others, too, have found that sharing data and samples with others remains a concern for participants (Trinidad et al 2010). Non-Hispanic black individuals have been found to be less likely to consent to storage and future genetic research and did not want their sample to be shared and included in national repositories (Chen et al 2005;Mezuk et al 2008;McQuillan et al 2003). These studies also found that personal characteristics such as age or gender and a history of themselves or a family member having been affected by disease did not appear to influence the allowance of storage and future testing.…”

“…Unfortunately, research experience has found incongruence between the stated willingness to donate a biological sample and the actual participation rates in genetic research (Johnsson et al 2010). Studies around the world often find at least 80 % of people state that they are willing to donate biological material for research purposes (Wendler 2006;Sanderson et al 2013); however, the actual participation rates for genetic and biobank research can be closer to half of the rate of reported willingness (Johnsson et al 2010), although some efforts have had high actual participation (McQuillan et al 2003). In studies recruiting from general population or community samples, participation rates are lower when a consent form mentions the study of genes and DNA (Matsui et al 2005;McQuillan et al 2006;Melas et al 2010).…”

“…Concerns of trust become more prominent, as well as a need for more information regarding the purpose and mechanism for sharing genetic research data (Lemke et al 2010;Trinidad et al 2010); acceptability may be different for certain subpopulations, even if they are willing to donate DNA for specific analyses described in the consent form. Previous research has provided some empirical evidence on the willingness of research participants from general populations to consent to having their genetic material included in repositories for future research purposes, and important subgroup differences associated with the collection and storage of samples have been noted especially involving race/ethnicity (Chen et al 2005;Mezuk et al 2008;McQuillan et al 2003;Sanderson et al 2013). African Americans may have less trust in researchers with respect to how genetic information might be used (Sterling et al 2006) and young adults have also expressed a greater desire to want direct control over what data can be shared (Trinidad et al 2010).…”