{"title":"Decision-making about non-invasive prenatal testing: women’s moral reasoning in the absence of a risk of miscarriage in Germany","authors":"S. Reinsch, Anika König, C. Rehmann-Sutter","doi":"10.1080/14636778.2020.1805305","DOIUrl":null,"url":null,"abstract":"This paper examines women’s experiences with decision-making about non-invasive prenatal testing (NIPT). Such tests offer knowledge about chromosomal disorders early in pregnancy, without the risk of miscarriage associated with invasive procedures such as amniocentesis. Based on qualitative interviews with women in Germany who used, or declined, NIPT, we show how some women, who would not consider amniocentesis due to the risk of miscarriage, welcome the knowledge provided by, and the additional agency resulting from, NIPT. For others, declining the offer to “know more” becomes increasingly difficult to articulate. The absence of risk strips women of a “good reason” to justify their decision not to test, thus implicitly challenging their “right not to know.” Moreover, NIPT heightens moral dilemmas within relationships with partners, existing children, and sometimes other close relatives. While clinically “non-invasive,” we argue that NIPT changes decision-making in an ethically and socially highly significant way.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2020-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"8","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"New Genetics and Society","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/14636778.2020.1805305","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"BIOTECHNOLOGY & APPLIED MICROBIOLOGY","Score":null,"Total":0}
引用次数: 8
Abstract
This paper examines women’s experiences with decision-making about non-invasive prenatal testing (NIPT). Such tests offer knowledge about chromosomal disorders early in pregnancy, without the risk of miscarriage associated with invasive procedures such as amniocentesis. Based on qualitative interviews with women in Germany who used, or declined, NIPT, we show how some women, who would not consider amniocentesis due to the risk of miscarriage, welcome the knowledge provided by, and the additional agency resulting from, NIPT. For others, declining the offer to “know more” becomes increasingly difficult to articulate. The absence of risk strips women of a “good reason” to justify their decision not to test, thus implicitly challenging their “right not to know.” Moreover, NIPT heightens moral dilemmas within relationships with partners, existing children, and sometimes other close relatives. While clinically “non-invasive,” we argue that NIPT changes decision-making in an ethically and socially highly significant way.
期刊介绍:
New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which:
-Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences;
-Publishes theoretical and empirical contributions reflecting its multi-faceted development;
-Provides an international platform for critical reflection and debate;
-Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences.
New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.