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

  • Original Research
  • Published:
Journal of Genetic Counseling

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.

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Acknowledgements

The authors thank Dr. Beverly Gor, Dr. Zhi-Qin Jiang, Andrew Kovacs, Wade Lanning, Jan Rettel, Arthur Tsai, Jessica Jade Tsai, Michelle Tseng, and Ning Zhang for their assistance in recruiting participants for this project. We also thank Richard Hajek and Lynne Nguyen for providing guidance and support during the recruitment process.

Author information

Authors and Affiliations

  1. Genetic Counseling Program, The University of Texas Graduate School of Biomedical Sciences at Houston, Houston, TX, USA

    Ginger J. Tsai, Jennifer L. Czerwinski & Sarah Jane Noblin

  2. Department of Internal Medicine, Division of Medical Genetics, McGovern Medical School at The University of Texas Health Science Center at Houston, Houston, TX, USA

    Ginger J. Tsai

  3. Department of Epidemiology, Division of OVP, Cancer Prevention and Population Sciences, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Carrie A. Cameron

  4. Department of Obstetrics, Gynecology, and Reproductive Services, McGovern Medical School at The University of Texas Health Science Center at Houston, Houston, TX, USA

    Jennifer L. Czerwinski, Hector Mendez-Figueroa & Sarah Jane Noblin

  5. Department of Behavioral Science, Division of Cancer Prevention and Population Sciences, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Susan K. Peterson

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  1. Ginger J. Tsai
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  2. Carrie A. Cameron
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  3. Jennifer L. Czerwinski
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  4. Hector Mendez-Figueroa
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  5. Susan K. Peterson
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  6. Sarah Jane Noblin
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Corresponding author

Correspondence to Ginger J. Tsai.

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Conflict of Interest

Ginger J. Tsai, Carrie A. Cameron, Jennifer L. Czerwinski, Hector Mendez-Figueroa, Susan K. Peterson, and Sarah Jane Noblin declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants for being included in this study.

Animal Studies

This article does not contain any studies with animals performed by any of the authors.

This research was performed in partial fulfillment of the requirements for the M.S. degree from The University of Texas Graduate School of Bio medical Sciences at Houston at The University of Texas Health Science Center at Houston, Houston, Texas, 77030.

Appendix: Interview Guide

Appendix: Interview Guide

Introduction

Hello, my name is [researcher]. How are you today? I’m calling you about the research study you read about/signed up for on ___[date listed on consent form]___. Do you remember reading about this? I am trying to look at if people who were raised with the beliefs and traditions of different countries make different kinds of decisions about going to the doctor when they are pregnant. Would you mind taking 45 to 60 min to speak with me?

Introductory questions

How are you doing today? How are your children doing? How is your family doing?

Rationale for the study

I’m a student at the University of Texas genetic counseling program. Genetic counselors are part of the medical team and they help people understand what genetic testing is and help people make decisions related to genetics. I grew up in an Asian household. My parents are from Taiwan, and they worked hard to teach me about the traditions and values that they grew up with. These included hard work, humility, and honoring authority. While I was in my first year in clinic here, when I was observing some counseling sessions, I noticed that I was being taught to approach patients very differently, in a way that would not really be appropriate in a clinic in Taiwan. This led me to think whether there were other differences that we could learn about, that would help us provide better counseling and better care to Asian patients in a medical setting. I’m talking to you and a few other women to try to get your insight on topics related to genetics and pregnancy. I really want your stories to be heard so that we can help doctors and nurses understand the women in your community and provide better experiences for the community. Before we begin, I wanted to get a little bit of information about you.

Demographic questions

  • Ethnicity: It says here on the consent form you filled out that your native country or heritage country is [country/countries listed on consent form]. Is that correct?

  • Age: Could you tell me how old you are?

  • Acculturation: Were you born in the United States? (If no: How long have you lived in the United States? How many years has it been since you left [native country]?)

  • Religion: Do you believe in any particular religion? Would you mind telling me what it is?

  • Pregnancy history: Are you pregnant right now? If yes, is this your first child? How many times have you been pregnant? How many children do you have?

  • Education: What is your highest level of education? What degrees have you earned?

Explanation of questionnaire

I’m going to be telling you a story broken up into four parts. The story is based on an experience I had in clinic. I’d like to talk to you about these stories with you after each part. Maybe you might wonder what the person in the story should do, or what advice you might tell the person in the story. I understand that you may need some time to decide on your own response. I may also ask you some questions after your response to help me get a better understanding of your feelings. Before we begin, do you have any questions for me?

First Story: Problem with Pregnancy (ultrasound)

Our story centers around Ms. Lee, a patient who is a lot like you: [list patient’s age, country of origin, acculturation details]. Ms. Lee was 20 weeks pregnant, and she was at her OB/GYN or doctor’s office to get an ultrasound to scan every part of the baby’s body. Have you heard of ultrasounds? [pause] They’re a machine that lets you look at a picture of the baby inside the mom. Well, when the doctor got that picture of the baby, the doctor told her that there was a problem with the baby, and that the baby might have some problems after it was born. The doctor said that it could just be a physical defect, but it could also affect the baby’s mind and brain. It could be a condition that ran in Ms. Lee’s family, but it was hard to tell with the picture from the ultrasound. Ms. Lee wasn’t really sure what to do about this problem.

Probe questions for first story:

  • What would you say the next step would be for her?

  • “You’d tell Ms. Lee....?”

  • What do you think Ms. Lee needs in this situation? Emotional support, information, care from her family?

  • Who else do you think Ms. Lee should talk to about this situation?

  • How do you think the situation might be different if Ms. Lee were in [home country]?

Second Story: Genetic Counseling

The doctor suggested that Ms. Lee go see a genetic counselor, who’s a specialist that explains genetic conditions, tests, and risks, because the problem on the ultrasound could be related to something genetic. That’s what I’m training to do in school right now. A genetic change is a change that affects our body and changes parts of our body and mind. Sometimes these changes happen by chance when the baby is being created, such as Down syndrome or cleft lip and palate, and sometimes these changes are passed down from the parents to the baby, such as sickle cell disease or thalassemia diseases which affect the blood.

Probe questions to second story:

  • Have you heard about, or do you know of, any genetic conditions in pregnancy you would be worried about for her? It could be something passed down through her family or something that happens by chance, like a physical defect.

  • Which people in her life, like family members or anyone else, should Ms. Lee talk to before making any decisions about going to see the genetic counselor?

  • Have you heard of genetic counseling before?

  • What kinds of questions do you think she should ask the genetic counselor? What information do you think she needs?

  • What kinds of decisions do you think Ms. Lee needs to make right now, before going to see a genetic counselor?

  • Ms. Lee ended up going to see the genetic counselor. However, she didn’t show up to her first scheduled genetic counseling appointment; the genetic counselor ended up seeing her on a rescheduled date. What do you think she was feeling or thinking about when she decided not to go the first time?

Third Story: Genetic Testing

At the appointment, the genetic counselor explained to Ms. Lee that she could get genetic testing for the pregnancy. The testing could give a better idea of whether or not the baby had a genetic condition and what type of genetic condition it was. The genetic counselor explained the different genetic things that could happen in pregnancy and what could or couldn’t be done about them. The counselor also explained what genetic conditions might be dangerous to the mother, the baby, or both. Ms. Lee asked the genetic counselor what she should do. The genetic counselor said that it was Ms. Lee’s choice and it seemed like Ms. Lee got more and more frustrated every time the genetic counselor said that.

Probe questions to third story:

  • Is there anything you think the genetic counselor could have done differently to help Ms. Lee in this situation?

  • Are there any conditions or problems with the pregnancy you think Ms. Lee should get the baby tested for? For example, we can test to see if the baby has Down syndrome and other conditions that happen by chance, and we can also test the baby for specific conditions that run in Ms. Lee’s family.

  • Some genetic tests just require a blood sample from the mother, but some of them need to take a little bit of fluid from around the baby which has some risks associated with it...do you think this would affect Ms. Lee’s answer?

  • How do you think the situation would change if Ms. Lee were in [country of ancestry/heritage]?

  • Which people in her life, like family members, should she talk to before making any decisions about testing?

Final Story: Termination

Ms. Lee decided to get genetic testing and found out that the baby had a genetic condition that might cause problems in the baby’s life. For example, a baby with trisomy 13 would be born with severe physical defects and intellectual disability.

Probe questions for final story:

  • What do you think she should do about her pregnancy? (Do you think it is appropriate for her to terminate the pregnancy?)

  • What if she found the baby had a condition that runs in her family [can use example from interviewee] instead of trisomy 13?

  • Do you think the answer would change if it were a physical defect that could be corrected by surgery?

  • Who should she talk to after finding out about this news?

  • Who does she need to talk to before making a decision about the next step?

  • How do you think the decision would change if she were in [country of ancestry/heritage]?

Ending Comments

Thank you so much for taking the time to speak with me today. I can’t thank you enough for providing your insight, and I’m sure that the conversation we had will help us to provide better health care to the [country of ancestry/heritage] community in the future. I hope health and happiness guide you and your family forward into the future.

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Tsai, G.J., Cameron, C.A., Czerwinski, J.L. et al. Attitudes Towards Prenatal Genetic Counseling, Prenatal Genetic Testing, and Termination of Pregnancy among Southeast and East Asian Women in the United States. J Genet Counsel 26, 1041–1058 (2017). https://doi.org/10.1007/s10897-017-0084-9

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