Attitudes Towards Prenatal Genetic Counseling, Prenatal Genetic Testing, and Termination of Pregnancy among Southeast and East Asian Women in the United States

Abstract

Recognizing the heterogeneity of the Asian population with regards to acculturation, education, health awareness, and cultural values is vital for tailoring culturally sensitive and appropriate care. Prior studies show that cultural values influence perceptions of genetics within Asian populations. The reputation of the family unit factors into decisions such as pregnancy termination and disclosure of family medical history, and the nondirective model of American genetic counseling may conflict with the historical Asian model of paternalistic health care. Previous studies also provide conflicting evidence regarding correlations between education, acculturation, age, and awareness and perceptions of genetic testing. The aims of this study were to describe attitudes towards prenatal genetics among Southeast and East Asian women living in the United States for varying amounts of time and to explore sociocultural factors influencing those attitudes. Twenty-three Asian women who were members of Asian cultural organizations in the United States were interviewed via telephone about their attitudes towards prenatal genetic counseling, prenatal genetic testing, and termination of pregnancy. Responses were transcribed and coded for common themes using a thematic analysis approach. Four major themes emerged. In general, participants: (1) had diverse expectations for genetic counselors; (2) tended to weigh risks and benefits with regards to genetic testing decisions; (3) had mixed views on termination for lethal and non-lethal genetic conditions; and (4) identified cultural factors which influenced testing and termination such as lack of available resources, societal shame and stigma, and family pressure. These findings may allow prenatal genetic counselors to gain a richer, more nuanced understanding of their Asian patients and to offer culturally tailored prenatal genetic counseling.

Autism Spectrum Disorders: Prenatal Genetic Testing and Abortion Decision-Making among Taiwanese Mothers of Affected Children

“…Of note, subjective norms related to professionals, which comprised of physicians and other health professions (e.g., nurses, social workers, psychologists, and occupational/physical/speech therapists), were found to be significantly and positively associated with participating mothers' attitudes toward PGT for detecting ASD susceptibility genes. This result is consistent with past studies, which suggested that individuals' attitudes toward genetic testing were influenced by health professionals [32,50,52]. Yet, it is important to highlight that the attitudes of the school teachers of the children with ASD could also affect mothers' attitudes.…”

“…Moreover, in our previous qualitative study, abortion is the most prominent motivation for Taiwanese parents of children with ASD to undergo PGT for detecting ASD susceptibility genes. The potential explanation could be that in Taiwan, having a child with mental, intellectual, or development disability is associated with cultural stigma and disgrace for the family, which may impact mothers' perceptions regarding PGT and abortion [13,50]. Moreover, the Genetic Health Act [51] in Taiwan has made abortion easier for pregnant women.…”

“…Women may have an abortion if they believe that the pregnancy may affect their mental health, physical health, or family life. Other factors, such as family burdens, psychological hardship, and lack of adequate resources and social welfare to support families of children with ASD, might provide additional interpretation as well [13,20,50,52].…”

Developing culturally informed genetic services for the Somali immigrants in Minnesota

“…However, for a unique population with limited experience in genetics and healthcare, a nondirective approach can have potential drawbacks as nondirectiveness may contradict the population's cultural expectation in health care. Patient confusion and frustration, resistance behaviors, and inappropriate decision‐making are drawbacks previously reported in other ethnic populations (Tsai et al, ; Wang & Marsh, ; Wessels, Koole, & Penn, ). It can also lead to a perception of providers not being knowledgeable, as shown by our results.…”

The factors affecting amniocentesis decision by pregnant women in the risk group and the influence of consultant

“…These variables seem to be available in Asian populations, even in the members of families which immigrated to other countries. [9] A physician offering genetic consultation should take all these characteristics in consideration. It is clear that this procedure, which is a kind of psychotherapy session, should be carried out in an unbiased and non-directive manner.…”