L'expérience de dépistage génétique prénatal non invasif chez des femmes parlant le mandarin et l'anglais

Translated title of the contribution: Experiences of Mandarin-speaking and English-speaking women of undergoing non-invasive prenatal genetic screening

Research output: Contribution to journalShort survey

2 Citations (Scopus)

Abstract

Introduction Cell-free DNA testing for fetal aneuploidies has been broadly commercialized internationally, especially in the United States and China. It is a relatively new technology, and allows for the non-invasive screening of common aneuploidies more accurately than traditional serum screening. However, the implementation of cfDNA differs according to the healthcare context in which it takes place. Methods Using content analysis of online pregnancy forums in China and the US, we compared the views of Mandarin-speaking and English-speaking participants on cfDNA testing with a focus on cfDNA within the broader prenatal testing landscape. Results We found factually incorrect beliefs regarding cfDNA expressed in both the Mandarin-speaking and English-speaking groups. Though some English-speaking women knew cfDNA was for screening purposes, many nevertheless discussed the test and its results as diagnostic. Many Mandarin-speaking women expressed the belief that cfDNA was completely accurate, and none mentioned the possibility of a false positive. Although English-speaking women discussed speaking with a genetic counseling about their results, there was almost no mention of genetic counseling in the Mandarin-speaking group; some Mandarin-speaking women mentioned receiving their cfDNA results via text message. Discussion These findings raise concerns about the informed consent that women are giving to undergo cfDNA screening. The price and availability of cfDNA also appeared to pose a significant barrier to many women considering cfDNA. Both Mandarin and English speakers viewed cfDNA as a very expensive test, and English-speaking women frequently discussed difficulty in getting insurance to cover it. Women in both groups also discussed the lack of convenient access to cfDNA in their area, an issue that was particularly prevalent in the Mandarin-speaking group, many of whom mentioned that cfDNA was only available in large cities or certain hospitals. These concerns introduce the possibility of inequities in access to certain prenatal screening technologies. Conclusion Overall, our findings illustrate that while some of the barriers cfDNA testing is facing in China and US are dependent on cultural and structural context, many of the central issues of informed consent, affordability and access are consistent cross-culturally.

Original languageFrench
Pages (from-to)372-382
Number of pages11
JournalEthics, Medicine and Public Health
Volume2
Issue number3
DOIs
StatePublished - Jul 1 2016

Fingerprint

Genetic Testing
Prenatal Diagnosis
China
Genetic Counseling
Aneuploidy
Informed Consent
Text Messaging
Technology
Insurance
Delivery of Health Care
Pregnancy
DNA
Serum

Keywords

  • cfDNA
  • China
  • Genetic screening
  • Genetic testing
  • Informed consent
  • Non-invasive prenatal genetic screening
  • Prenatal care
  • United States

ASJC Scopus subject areas

  • Health Policy

Cite this

L'expérience de dépistage génétique prénatal non invasif chez des femmes parlant le mandarin et l'anglais. / Li, G.; Allyse, Megan.

In: Ethics, Medicine and Public Health, Vol. 2, No. 3, 01.07.2016, p. 372-382.

Research output: Contribution to journalShort survey

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title = "L'exp{\'e}rience de d{\'e}pistage g{\'e}n{\'e}tique pr{\'e}natal non invasif chez des femmes parlant le mandarin et l'anglais",
abstract = "Introduction Cell-free DNA testing for fetal aneuploidies has been broadly commercialized internationally, especially in the United States and China. It is a relatively new technology, and allows for the non-invasive screening of common aneuploidies more accurately than traditional serum screening. However, the implementation of cfDNA differs according to the healthcare context in which it takes place. Methods Using content analysis of online pregnancy forums in China and the US, we compared the views of Mandarin-speaking and English-speaking participants on cfDNA testing with a focus on cfDNA within the broader prenatal testing landscape. Results We found factually incorrect beliefs regarding cfDNA expressed in both the Mandarin-speaking and English-speaking groups. Though some English-speaking women knew cfDNA was for screening purposes, many nevertheless discussed the test and its results as diagnostic. Many Mandarin-speaking women expressed the belief that cfDNA was completely accurate, and none mentioned the possibility of a false positive. Although English-speaking women discussed speaking with a genetic counseling about their results, there was almost no mention of genetic counseling in the Mandarin-speaking group; some Mandarin-speaking women mentioned receiving their cfDNA results via text message. Discussion These findings raise concerns about the informed consent that women are giving to undergo cfDNA screening. The price and availability of cfDNA also appeared to pose a significant barrier to many women considering cfDNA. Both Mandarin and English speakers viewed cfDNA as a very expensive test, and English-speaking women frequently discussed difficulty in getting insurance to cover it. Women in both groups also discussed the lack of convenient access to cfDNA in their area, an issue that was particularly prevalent in the Mandarin-speaking group, many of whom mentioned that cfDNA was only available in large cities or certain hospitals. These concerns introduce the possibility of inequities in access to certain prenatal screening technologies. Conclusion Overall, our findings illustrate that while some of the barriers cfDNA testing is facing in China and US are dependent on cultural and structural context, many of the central issues of informed consent, affordability and access are consistent cross-culturally.",
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N2 - Introduction Cell-free DNA testing for fetal aneuploidies has been broadly commercialized internationally, especially in the United States and China. It is a relatively new technology, and allows for the non-invasive screening of common aneuploidies more accurately than traditional serum screening. However, the implementation of cfDNA differs according to the healthcare context in which it takes place. Methods Using content analysis of online pregnancy forums in China and the US, we compared the views of Mandarin-speaking and English-speaking participants on cfDNA testing with a focus on cfDNA within the broader prenatal testing landscape. Results We found factually incorrect beliefs regarding cfDNA expressed in both the Mandarin-speaking and English-speaking groups. Though some English-speaking women knew cfDNA was for screening purposes, many nevertheless discussed the test and its results as diagnostic. Many Mandarin-speaking women expressed the belief that cfDNA was completely accurate, and none mentioned the possibility of a false positive. Although English-speaking women discussed speaking with a genetic counseling about their results, there was almost no mention of genetic counseling in the Mandarin-speaking group; some Mandarin-speaking women mentioned receiving their cfDNA results via text message. Discussion These findings raise concerns about the informed consent that women are giving to undergo cfDNA screening. The price and availability of cfDNA also appeared to pose a significant barrier to many women considering cfDNA. Both Mandarin and English speakers viewed cfDNA as a very expensive test, and English-speaking women frequently discussed difficulty in getting insurance to cover it. Women in both groups also discussed the lack of convenient access to cfDNA in their area, an issue that was particularly prevalent in the Mandarin-speaking group, many of whom mentioned that cfDNA was only available in large cities or certain hospitals. These concerns introduce the possibility of inequities in access to certain prenatal screening technologies. Conclusion Overall, our findings illustrate that while some of the barriers cfDNA testing is facing in China and US are dependent on cultural and structural context, many of the central issues of informed consent, affordability and access are consistent cross-culturally.

AB - Introduction Cell-free DNA testing for fetal aneuploidies has been broadly commercialized internationally, especially in the United States and China. It is a relatively new technology, and allows for the non-invasive screening of common aneuploidies more accurately than traditional serum screening. However, the implementation of cfDNA differs according to the healthcare context in which it takes place. Methods Using content analysis of online pregnancy forums in China and the US, we compared the views of Mandarin-speaking and English-speaking participants on cfDNA testing with a focus on cfDNA within the broader prenatal testing landscape. Results We found factually incorrect beliefs regarding cfDNA expressed in both the Mandarin-speaking and English-speaking groups. Though some English-speaking women knew cfDNA was for screening purposes, many nevertheless discussed the test and its results as diagnostic. Many Mandarin-speaking women expressed the belief that cfDNA was completely accurate, and none mentioned the possibility of a false positive. Although English-speaking women discussed speaking with a genetic counseling about their results, there was almost no mention of genetic counseling in the Mandarin-speaking group; some Mandarin-speaking women mentioned receiving their cfDNA results via text message. Discussion These findings raise concerns about the informed consent that women are giving to undergo cfDNA screening. The price and availability of cfDNA also appeared to pose a significant barrier to many women considering cfDNA. Both Mandarin and English speakers viewed cfDNA as a very expensive test, and English-speaking women frequently discussed difficulty in getting insurance to cover it. Women in both groups also discussed the lack of convenient access to cfDNA in their area, an issue that was particularly prevalent in the Mandarin-speaking group, many of whom mentioned that cfDNA was only available in large cities or certain hospitals. These concerns introduce the possibility of inequities in access to certain prenatal screening technologies. Conclusion Overall, our findings illustrate that while some of the barriers cfDNA testing is facing in China and US are dependent on cultural and structural context, many of the central issues of informed consent, affordability and access are consistent cross-culturally.

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