Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study

Table 2

Knowledge, perceptions, beliefs, and willingness to engage in health-related genetic research (𝑁=212).

Variable	n	(%)
Knowledge about principles and implications of genetics			Range = 3–11; mean = 8.49; SD = 1.63
Knowledge of implications of consanguinity on heritable diseases/conditions	197	92.9
Knowledge of implications of late parity on heritable diseases/conditions	167	78.8
Knowledge of influence of the environment on genetic disorders	186	87.7
Knowledge of tests and procedures used in genetic testing
Breast tumor analysis for BRCA1/BRCA2 mutations	61	28.8
Amniotic fluid analysis for fetal defects	174	82.1
Capillary blood analysis of newborns genetic diseases in newborns	144	67.9
Beliefs about advantages of genetic testing			Range = 0–6; mean = 3.4; SD = 2.2
Believe that testing would provide important information	112	52.8
Believe that testing would lead to improved risk assessment	170	80.2
Believe that testing would lead to improved treatment	140	66.0
Beliefs about disadvantages of genetic testing			Range = 13–53; mean = 34.3; SD = 7.14
Believe that testing would breach privacy and confidentiality	121	57.1
Believe that abnormality would have negative impact on the family	111	52.3
Believe that testing would cause emotional trauma	47	22.2
Believe that results would cause other to view them negatively	28	13.2
Believe that results would result in feelings of being “singled out”	19	9.0
Believe that genetic abnormality would cause a sense of shame	17	8.0
Perceived utility of gene testing			Range = 0–6; mean = 5.6; SD = 1.1
Believe that gene testing would provide information about disease risk	199	93.9
Believe that gene testing would personalize screening/diagnostics	199	93.9
Believe that gene testing would lead to personalize treatments	191	90.1
Believe that gene testing would provide health information for lifestyle intervention	198	93.4
Provider trust and involvement in health care decisions			Range = 31–80; mean = 60.5; SD = 9.1
Trust the provider’s medical judgment	148	69.8
Trust that providers place their needs above other considerations	143	67.5
Providers refer for specialized testing as needed	190	89.6
Follow provider’s medical advice	172	81.1
Willing to participate in health-related study that included gene analysis	116	54.7
Willing to complete detailed questionnaires about family history	113	55.3
Willing to allow the collection of environmental samples	94	44.3
Willing to provide biological specimens for gene analysis	109	51.4
Willing to participate in longitudinal studies	94	44.3