Why are Asian women less likely to make informed and autonomous choice in prenatal screening? Japanese Women’s Experiences of Prenatal Screening for Detecting Fetal Disorders in Austria 1st World Congress on Migration, Ethnicity, Race and Health Edinburgh, 17th-19th May 2018 Yuki Seidler1), 2) & Erika Mosor1) Medical University of Vienna, Center for Public Health; CeMSIIS, Section for Outcome Research Center for Health and Migration, Vienna

What is known about Asian women Compared to the host population: Less likely to make informed choices; Have poorer knowledge; and Decisions more likely to be influenced by family members. Reasons Language barrier? Education/Socio-economic factors? Religion? Nevertheless, similar diverse attitudes towards prenatal screening and diagnostic testing. One cannot say that Asian women are in particular for or against prenatal screening that can detect foetal anomalies. Studies in UK show lower uptake of screenings among Asian women but in the USA it is similar and the findings are not conclusive. Most studies conducted in the UK and USA among South Asian and Chinese. Possible reasons that have been investigated include language barrier, education and religion. Nevertheless these factors could apply to other migrant groups in western countries. Source: Yu, J. (2012).

Study aim and method Aim Explore the prenatal screening experiences of Japanese women in Austria; Investigate the reasons why informed and autonomous choices are difficult. With focus on the influences of: Language, education, religion, family and others. Method Qualitative interview study Line-to-line coding by two coders Thematic analysis Especially in regarlanguage, education and re

Why Japanese? Situation in Japan The only country in the world that prohibits abortion due to foetal anomalies but allows it due to economic reasons. Rapidly increasing maternal age at first birth (31). Situation in Japan Healthcare providers in general reluctant to recommend options of screening test; Relatively expensive; Limited availability and accessibility. Under-investigation: quite likely due to their relatively high socio-economic status and the assumption that they are capable of making informed decision. Abortion is legal in Japan but it is illegal to terminate pregnancy based on the knowledge of foetal anomalies. Other legally accepted reasons include cases of rape and threat to maternal physical health. Threat to mother’s mental health is not explicitly spelled-out in the law. Nevertheless, many women do terminate pregnancy after receiving positive diagnostic or screening test results but these are justified under the reason that they cannot financial afford to have such a child. Source: UN (2014).

Non-invasive screening tests in Austria Genetic/ non-genetic Type Aim Timing/ Method Non-genetic Organ screening Malformation of foetus organs - prepare for treatment. 18-22 weeks: special ultrasound Genetic Nuchal translucency (NT) screening Detect chromosomal anomalies – further testing 11-14 weeks: Combined test/OSCAR* NT screening + maternal serum test (Alpha-fetoprotein) + maternal age – further test or diagnostic test. Special ultrasound + serum test NIPT (2012)** Maternal serum test (Cell-free DNA) - consideration for diagnostic testing. From 10 weeks onwards In Austria, screening and diagnostic tests that can detect foetal anomalies are not part of the social insurance scheme. Exceptions are made for high risk women and when backed up by medical reasons. Austria is thus cautious not to make such screening tests as a universal screening programme. Nevertheless, like in many other western countries, prenatal screening is established as a routine part of prenatal examinations. Guidelines recommends that any of such screening should only be performed with women’s informed consent. Our study is restricted to the experiences of women going through the following four screening tests and do not include experiences of diagnostic testing such as amniocentesis. These screening can only calculate the possibilities and if results are positive or with high value, usually a further testing or a diagnostic test is recommended. Specificity and sensitively is the highest for NIPT (also the most expensive). NT: Measures the thickness of a space at the back of the fetus’s neck. Organ screening: increases treatment opportunities NIPT is usually done in the combination with NT. It is important to point out that these screening tests are performed quite in the early stage of pregnancy – very often right after confirming the status of pregnancy. This have implications to informed consent which I will elaborate later in the discussion. *OSCAR: One-stop Clinic for Assessment of Risk. **Non-invasive Prenatal Tests.

Study participants 14 Japanese women; 11 spouses 57% over the age of 35 at first birth 78% over the age of 35 at second birth (n=9) All insured (public, private or both) All spouses employed; two women employed Highly educated: All women more than college degree All but one spouse with University degree Spouses’ nationality: Japanese (4), Austrian (4), others (3) German language skills: from very good to very poor Written informed consent Our study participants included 14 Japanese women and 11 of their spouses. Spouses were recruited only with women’s consent. All but one spouse was interviewed together with the women. It is unique to investigate into male’s perspective and interaction with their wives. Written informed consent was obtained from all. No women were pregnant at the time of the interview. Source: UN (2014).

Results Prenatal screening n=14 Prenatal screening offered 14 Organ screening Combined test 5 Not sure if combined test was done 4 NIPT 1 NT without serum test 7 Only organ screening 2 Organ screening: Three could not differentiate it from routine ultrasound examinations but three were convinced that it increases treatment opportunity Only organ screening: The only two women that we can confirm as a case that made some sort of “informed” choice themselves. Interview in 2016: all women gave birth between 2013-2016.

Decision making process of Japanese women Shocked and unprepared No one to really consult Respecting husbands’ wishes Following physicians’ order/advice Lack of knowledge Consulted: Friends, Husbands, Family & Colleagues Not consulted: Physicians & Midwives Directive counseling Who to trust Info. Japanese Japan Screening routinised in Austria Autonomous decision-making not a norm language Screening not routinsed in Japan Lack of: social network; pro-active consultation Accessibility Availability Age

Representative quotes “It was rather shocking [that the screening test was so strongly recommended], right?” [01]. “It was not like if I had a choice to go or not to go. It was like ‘ah, here [in Austria] it is compulsory’ [14]. Well here in Austria the doctor was the only person I could rely on. I thought as long as I do what the doctor says there will be no problems …” [10:] “I thought I should do the things that people here normally do and went with the flow and did the OSCAR” [02]. “..well ummmm [different from my husband] I was not really positive about taking the test [NIPT]….Am I really going to take it? [11]” [Not having a person to talk to] “that was REALLY the hardest part” [13].

Conclusion/Discussion Influence of language skill on informed-decision making is partly related to migrants’ information-seeking behaviour; High education and socio-economic status do not automatically lead to migrants having strong social networks in the host country; The home-country norm of following doctors’ advice, respecting families’ wishes and not valuing ‘autonomous’ choice could be a factor as strong as religion. For newly arriving migrants, how prenatal screening is carried out in home country has an impact on how the screening is experienced in the host country. The home-country norm could be similar among Asian countries (ie. South Korean Study in the US that show women felt uncomfortable in making autonomous choice). Our study finding was very similar to Muslim women from different country in Austria.

Practice implication/recommendation Migrants of high education may be at particular risk of potential foetal anomalies (due to high maternal age at first birth); One cannot assume that educated migrants have sufficient knowledge on screening tests especially if they come from low screening countries; Proactive support is needed to encourage non-native speakers to access and collect local information; Involvement of midwives from the very early stage of pregnancy, preferably at the first check-up (provide basic information about prenatal screening).

Thank you! Email: yuki.seidler@univie.ac.at