Table 3 Specific issues within six themes.

Access to genetic services (3 studies)

AA were referred to genetic services at lower rates than Whites and had more limited access to genetic testing.

Awareness of genetic services

(4 studies)

AA had some of the lowest levels of awareness regarding genetic tests among various racial groups.

Low levels of awareness also related to being outside the United States, shorter length of residence in United States, and low SES.

Different levels of awareness existed between different AA subgroups.

GT uptake (6 studies) & GC uptake (1 study)

High rates of uptake for GC/GT among AA groups.

Predictors of high testing uptake included race, but also other demographic factors such as history of disease and education level.

AA motivations to pursue GT

(7 studies)

AA had a higher level of perceived seriousness of illness compared to Whites.

AA had a limited amount of information about family health history.

Potential benefits to future generations were more important than personal benefits compared to other racial groups.

AA concerns about GT (9 studies)

Fear of genetic discrimination

Privacy concerns

Costs, lack of resources

Skepticism about genetic causes of disease

Avoidance of information about future disease risk

Worried about ability to emotionally handle genetic information

Worry about inaccurate results

Interference with pregnancy or fetal harm

Pregnant patients' attitudes toward prenatal testing

(7 studies)

Most AA pregnant patients were in favor of NIPS, PGD, and other types of prenatal testing.

Motivations to test:

Better preparation for birth

Provide better management

Inform decisions to terminate pregnancy

AA more interested in hypothetical PGD for nonhealth issues (i.e. IQ or sex selection) than other racial groups.

Language barriers

(5 studies)

Some AA were unintentionally inhibited from engaging or asking questions.

AA did not ask questions because they were not confident in English language or did not know what they were supposed to ask.

English-speaking AA had higher comprehension of test results, even when materials were provided in native languages.

Interpretation issues (5 studies) AA receive variable quality of interpretation, which increased misconceptions of genetic information.

Untrained interpreters, such as family members, often translated leading to more misunderstanding.

Some materials were translated to simplistically or too technically and resulted in miscommunication.

Genetic literacy

(4 studies)

Technical content was complex or conceptually difficult and AA misunderstood key information.

AA felt counseling was unclear or too long.

Expectations of communication style

(5 studies)

AA patients expected providers to give specific recommendations.

Nondirective counseling was viewed as ineffective and patients sought advice from others who were less qualified.

Family roles in decision-making (6 studies)

South/East Asian patients engaged in collective family decision-making for genetic testing.

Korean women wanted their husbands to be involvement in prenatal testing decisions.

Pakistani women said their family’s feelings would influence their decision to get prenatal testing.

Hmong patients preferred individual consent, rather than family or community consent.

Family communication

(5 studies)

AA were selective about disclosing test results to family, and family communication was lower than other racial groups.

Cascade testing

(3 studies)

Cascade screening and family testing was less prevalent for AA than other racial groups.

AA less likely to encourage family members to undergo testing compared to Whites.

Beliefs (8 studies)

Cultural beliefs held by AA were obstacles to GT and GC, such as avoiding removal of blood or fear of disharmony in pregnancy.

AA cultural beliefs were not always specified by researchers.

Stigma (5 studies)

AA feared strong negative views of disability and disease from their community.

AA women feared GT results may affect their marriage prospects.