Attitudes about genetics in underserved, culturally diverse populations

Area of Science:

• Genetics and genomics
• Public health
• Health disparities

Background:

• Public interest in genetics is rising due to discoveries in genetic susceptibility and the human genome.
• Understanding of genetics and genetic testing remains underexplored in underserved, culturally diverse communities.

Purpose of the Study:

• To investigate attitudes and knowledge regarding genetics and genetic testing among diverse patient and healthcare worker populations.
• To identify specific information needs and concerns within these communities.

Main Methods:

• Conducted eight focus groups in English, Spanish, and Chinese.
• Included 55 participants comprising patients and healthcare workers in New York City and Westchester, N.Y.

Main Results:

• Participants exhibited limited knowledge of genetics and genetic testing, with newborn screening being the least understood.
• Most participants desired more genetic information; Latinos and Chinese expressed positive attitudes, while Black Americans and Non-Hispanic Whites showed mixed feelings.
• Concerns included anxiety, fear of discrimination, financial burdens, and excessive testing, with Black Americans most worried about misuse of genetic information.

Conclusions:

• Diverse minority populations possess limited genetic knowledge and are not effectively reached by current educational strategies.
• Newborn screening, despite being mandatory, is poorly understood.
• These populations face a heightened risk of being excluded from genetic advancements due to historical access barriers to information and services.