African American Adults' Perspectives on Genetics and Genetic Research

Purpose: African Americans desire for information about genetic risk and their attitudes towards participation in genetic research are largely uncharacterized. This pilot study sought to gather data about these factors.

Methods: A survey was administered to 63 African Americans recruited at federally-qualified health centers. Questions assessed understanding of genetic risk, desire for information about genetics, and attitudes toward genetic research.

Results: The sample was 51% (n=32) male with an average age of 52.2 years. Over one-third (39.7%) were never married and nearly half (48.1%) reported good/excellent health. The sample was primarily low-income, with 34.9% on disability, 38.1% unemployed, and 34.9% uninsured. Although only 17.5% had talked with a healthcare provider about genetic risks, 76.2% indicated they would like this information. The majority said they were likely to consider participating in genetic research, with or without blood donation. Sixty-two percent believed a family history of cancer means a genetic risk exists, and 31.7% believed a genetic risk for cancer means nothing can be done to reduce the chance of getting sick. Twenty-one percent believed that in the absence of genetic risk, there is no reason for screening. There were no significant differences by gender.

Conclusions: African Americans desire discussions about genetic risk with their healthcare providers. A substantial proportion indicates willingness to partake in genetic research. The belief that a lack of genetic risk eliminates the need for screening and that preventive measures are ineffective if one has a genetic risk are two misperceptions that may be addressed through future interventions.