Literature DB >> 27277130

"The Top Priority Is a Healthy Baby": Narratives of Health, Disability, and Abortion in Online Pregnancy Forum Discussions in the US and China.

Grace Li1, Subhashini Chandrasekharan2, Megan Allyse3.   

Abstract

The introduction of cell-free DNA prenatal genetic screening has rekindled discussion of ethical and social questions surrounding prenatal testing, perceptions of disability, and abortion. The growing use of prenatal genetic screening presents a unique opportunity to assess decision-making around new methods of prenatal testing; especially as there is little available research comparing individual and cultural differences that affect a pregnant woman's decision-making on prenatal testing. We performed a content analysis of online pregnancy forums in the United States and Mainland China. Content from January 2012 to December 2013 was identified through search methodologies and refined to remove duplication. China-based content was translated by a native Mandarin speaker. We used qualitative analysis methods to identify common themes in the dataset. There were 333 English responses and 519 Mandarin responses. Three main themese were identified in the data: decision making factors, attitude towards the pregnancy, and attitudes towards abortion. Women's narratives reflected how broader social forces can have an impact on intimate personal decision-making. Women in the Mandarin dataset evoked stronger narratives of community and/or family decision-making in pregnancy and were more accepting of the possibility of abortion in the event of a finding of fetal abnormality. Narrative in the English dataset more frequently evoked ideas of unconditional love, regardless of fetal diagnosis, but also acknowledged much stronger support services for individuals with disability and less awareness of stigma. These results highlight the necessity of awareness around how broader cultural and social factors can consciously or unconsciously impact women's decisions and highlight potential focus areas for future counseling efforts.

Entities:  

Keywords:  Abortion; Decision-making; Disability; Down syndrome; Prenatal testing

Mesh:

Year:  2016        PMID: 27277130     DOI: 10.1007/s10897-016-9976-3

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  32 in total

1.  Disability rights critique of prenatal genetic testing: reflections and recommendations.

Authors:  Erik Parens; Adrienne Asch
Journal:  Ment Retard Dev Disabil Res Rev       Date:  2003

2.  Chinese cultural influences on parental caregiving obligations toward children with disabilities.

Authors:  Eleanor E Holroyd
Journal:  Qual Health Res       Date:  2003-01

3.  Variation in the decision to terminate pregnancy in the setting of fetal aneuploidy.

Authors:  Brian L Shaffer; Aaron B Caughey; Mary E Norton
Journal:  Prenat Diagn       Date:  2006-08       Impact factor: 3.050

4.  Noninvasive prenatal testing in China: Future detection of rare genetic diseases?

Authors:  Lin Mei; Qi Tang; Baiyu Sun; Lingzhong Xu
Journal:  Intractable Rare Dis Res       Date:  2014-08

5.  Old Questions, New Paradigms: Ethical, Legal, and Social Complications of Noninvasive Prenatal Testing.

Authors:  Marsha Michie; Megan Allyse
Journal:  AJOB Empir Bioeth       Date:  2015-01-01

Review 6.  Prenatal diagnosis and selective abortion: a challenge to practice and policy.

Authors:  A Asch
Journal:  Am J Public Health       Date:  1999-11       Impact factor: 9.308

7.  Noninvasive prenatal testing goes global.

Authors:  Subhashini Chandrasekharan; Mollie A Minear; Anthony Hung; Megan Allyse
Journal:  Sci Transl Med       Date:  2014-04-09       Impact factor: 17.956

8.  'Because of the risks': how US pregnant women account for refusing prenatal screening.

Authors:  S Markens; C H Browner; N Press
Journal:  Soc Sci Med       Date:  1999-08       Impact factor: 4.634

9.  Screening for neural-tube defects and maternal anxiety.

Authors:  J Fearn; B M Hibbard; K M Laurence; A Roberts; J O Robinson
Journal:  Br J Obstet Gynaecol       Date:  1982-03

10.  Attitudes towards non-invasive prenatal testing for aneuploidy among US adults of reproductive age.

Authors:  M Allyse; L C Sayres; T A Goodspeed; M K Cho
Journal:  J Perinatol       Date:  2014-03-06       Impact factor: 2.521

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  3 in total

1.  Perspectives of Pregnant People and Clinicians on Noninvasive Prenatal Testing: A Systematic Review and Qualitative Meta-synthesis.

Authors:  Meredith Vanstone; Alexandra Cernat; Umair Majid; Forum Trivedi; Chanté De Freitas
Journal:  Ont Health Technol Assess Ser       Date:  2019-02-19

2.  Current attitudes and preconceptions towards expanded carrier screening in the Eastern Chinese reproductive-aged population.

Authors:  Fang Zhang; Jianxin Tan; Binbin Shao; Tao Jiang; Ran Zhou; Yan Wang; Jingjing Zhang; Fengchang Qiao; Xiuqing Ji; Ya Wang; Ping Hu; Zhengfeng Xu
Journal:  J Assist Reprod Genet       Date:  2021-01-06       Impact factor: 3.412

3.  The influence of experiential knowledge and societal perceptions on decision-making regarding non-invasive prenatal testing (NIPT).

Authors:  Sophie Montgomery; Zaneta M Thayer
Journal:  BMC Pregnancy Childbirth       Date:  2020-10-19       Impact factor: 3.007

  3 in total

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