Biomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.
Department of Quantitative Health Sciences, Mayo Clinic, Jacksonville, Florida, USA.
Prenat Diagn. 2024 Apr;44(4):409-417. doi: 10.1002/pd.6541. Epub 2024 Feb 29.
Thirty-five states, including Florida, now cover cell-free DNA (cfDNA) screening of fetuses for all pregnant patients enrolled in state public insurance programs. We interviewed Black and Hispanic obstetric patients at a safety net clinic in Florida shortly after the state rolled out cfDNA as a first-tier screening method for publicly insured patients.
Black and Hispanic patients receiving prenatal care from a prenatal or maternal fetal medicine clinic at a federally qualified health center in Jacksonville, FL were invited to participate in a qualitative interview in English or Spanish to explore experiences and perceptions of prenatal cfDNA screening. Participants were recruited following their first prenatal visit when cfDNA is typically introduced. Interview transcripts were qualitatively analyzed for iterative themes based on principles of grounded theory.
One hundred Black and Hispanic patients (n = 51 non-Hispanic Black, n = 43 Hispanic, n = 3 Hispanic Black, n = 3 Not Reported/Other) completed an interview. Participants described minimal opportunity for pre-screening counseling and limited health literacy about cfDNA or its uses. Some believed that cfDNA could positively impact pregnancy health. Many were unsure if they had received cfDNA even though they were aware of the information provided by it. Most participants expressed an interest in cfDNA as a means for early detection of fetal sex and as an additional indication of general fetal health.
Patient experiences indicate limited informed consent and decision-making for cfDNA, discordant with professional guidelines on pre-screen counseling. Our findings suggest that there should be additional investment in implementing cfDNA in safety net settings to ensure that patients and providers receive the support necessary for effective patient counseling and follow-on care for the ethical implementation of cfDNA.
包括佛罗里达州在内的 35 个州现在为参加州公共保险计划的所有孕妇提供胎儿游离 DNA(cfDNA)筛查。在佛罗里达州将 cfDNA 作为公共保险患者的一线筛查方法推出后不久,我们采访了佛罗里达州一家服务于弱势群体的诊所中的黑人及西班牙裔产科患者。
在佛罗里达州杰克逊维尔的一家合格的联邦健康中心的产前或母胎医学诊所接受产前护理的黑人和西班牙裔患者,受邀参加了英语或西班牙语的定性访谈,以探讨他们对产前 cfDNA 筛查的经验和看法。参与者是在他们的第一次产前就诊时(通常会介绍 cfDNA)招募的。根据扎根理论的原则,对访谈记录进行了迭代主题的定性分析。
100 名黑人和西班牙裔患者(n=51 名非西班牙裔黑人,n=43 名西班牙裔,n=3 名西班牙裔黑人,n=3 名未报告/其他)完成了访谈。参与者表示,几乎没有机会进行预筛查咨询,对 cfDNA 或其用途的健康素养有限。有些人认为 cfDNA 可以积极影响妊娠健康。尽管他们知道 cfDNA 提供的信息,但许多人不确定自己是否接受了 cfDNA。大多数参与者表示有兴趣将 cfDNA 用作早期检测胎儿性别的手段,并作为一般胎儿健康的额外指标。
患者的经历表明,cfDNA 的知情同意和决策有限,与专业指南中关于预筛查咨询的建议不符。我们的研究结果表明,应该在服务于弱势群体的医疗环境中投入更多资源来实施 cfDNA,以确保患者和提供者获得必要的支持,以有效进行患者咨询,并为伦理实施 cfDNA 提供后续护理。