Spanish‐ and English‐Speaking Pregnant Women's Views on cfDNA and Other Prenatal Screening: Practical and Ethical Reflections

Abstract

The rapid clinical implementation of cell-free DNA (cfDNA) screening, a non-invasive method of prenatal genetic screening, has outpaced research on its social and ethical implications. This study is the first to compare the ethical and practical views of Spanish- and English-speaking pregnant women in the United States about cfDNA screening. Semi-structured interviews were conducted with diverse Spanish- and English-speaking women who had received prenatal care at a large academic medical center. Of the 24 interviewees, ten were Latinas who were interviewed in Spanish; English-language interviews were conducted with seven non-Hispanic Asian and seven non-Hispanic White women. Participants held positive opinions concerning the accuracy of cfDNA screening and often noted that it would enhance preparedness. Participants also expressed concerns about the possibility of inaccurate results and the potentially negative effects of cfDNA screening on the experience of pregnancy. Differences emerged between Spanish and English speakers in their portrayals of their relationships with prenatal health care providers, the extent to which they questioned providers’ advice, their ethical concerns, and their informational needs. We emphasize the importance of customizing prenatal test counseling to the needs of the individual patient, providing educationally appropriate counseling and literature, and mitigating potential language barriers.

Women’s perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions

“…If NIPT is publicly funded, this may increase perceived legitimacy and pressure to test, thereby increasing uptake and diverting resources (social and financial) away from the support of people with disabilities and their families [ 68 ]. The concern that increased use of NIPT will mean decreased support and possibilities for people living with disability has been well documented as a concern of women [ 49 , 53 , 68 , 69 , 71 , 72 ] and ethics scholars [ 17 , 26 ].…”

Views of the obstetric profession on non‐invasive prenatal testing in Aotearoa New Zealand: A national survey

“…Steps need to be taken to ensure that all women know about this test, and ask for it if they choose, even if it is not publicly funded. Similar to other countries, a New Zealand context for women's preferences around NIPT provision need to be ascertained, particularly with a focus on informed choice, and ensuring ethical and cultural preferences …”

Is preparation a good reason for prenatal genetic testing? Ethical and critical questions

“…Today, however, as prenatal genetic testing technologies have advanced beyond invasive diagnostics, becoming both easier and more accessible, women are increasingly choosing prenatal genetic testing without termination in mind (Farrell et al, 2011;Griffiths & Kuppermann, 2008;Mozersky, 2015;Norton, Nakagawa, & Kuppermann, 2014;Rapp & Ginsburg, 2001;Verweij, Oepkes, & de Boer, 2013). These women frequently cite another reason, one that is largely unexamined in the clinical literature: preparation (Allyse, Sayres, Goodspeed, Michie, & Cho, 2015;Bryant, Green, & Hewison, 2010;Farrell, Mercer, Agatisa, Smith, & Philipson, 2014;Floyd, Allyse, & Michie, 2016;Kellogg, Slattery, Hudgins, & Ormond, 2014;Lewis, Hill, & Chitty, 2014;Lewis, Hill, Skirton, & Chitty, 2012;Lewis, Silcock, & Chitty, 2013;Press & Browner, 1997;van Schendel et al, 2015). This reasoning, offered not only from pregnant women but frequently from testing laboratories and health care providers, reflects long-held assumptions that prenatal genetic results-properly delivered and followed with information, clinical surveillance, and/or social supportsprepare families for a child with a genetic condition, and even improve health and social outcomes for children and families.…”

“…Perhaps even more importantly, genetic screening using cell-free DNA (cfDNA) has enabled a much larger population to learn about the possibility of more genetic conditions during pregnancy, easily and with more accuracy than other screening paradigms (Gregg et al, 2014;Minear, Alessi, Allyse, Michie, & Chandrasekharan, 2015). Many women who might have refused invasive diagnosis because of the risks to the pregnancy now choose to learn genetic information about a potential child (Chetty, Garabedian, & Norton, 2013;Farrell et al, 2014;Floyd et al, 2016). Though some of these women and families have ruled out abortion as an option, many others defer considering termination.…”