Chinese Americans' views of prenatal genetic testing in the genomic era: a qualitative study
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abstract
Prenatal genetic testing (PGT) for early and accurate diagnosis of complex genomic diseases and traits, along with relatively rare and severe genetic disorders, is a growing trend in genomic medicine. To address the ethical, legal, and social issues regarding PGT use, the voices of racial/ethnic minorities should be heard. This first-of-its-kind qualitative study examined Chinese Americans' perspectives regarding PGT to diagnose their fetuses for various genetic/genomic diseases and traits. We conducted semi-structural, hypothetical-scenario-based interviews with 49 participants from two major Chinese-American communities in the South. Although approximately one fifth of participants refused to test their fetuses, most tended to favor PGT. The four most frequently identified diseases/traits mentioned by participants included family-history-related diseases, genetic disorders, intelligence quotient (IQ), and psychological/mental disorders. A few respondents, regardless of socio-demographic status, indicated they might terminate their pregnancies if their fetuses carried genes for family-history-related diseases, genetic disorders, low IQ, psychological/mental disorders, and/or physical defects. Participants' attitudes might reflect lack of genetic/genomic knowledge and unawareness of available resources for families with special needs. Moreover, some participants' attitudes appeared related to their cultural beliefs. Our findings represent an initial window to understand Chinese Americans' views regarding PGT. Additional quantitative studies on large samples are needed.
