Balancing Needs and Autonomy: The Involvement of Pregnant Women's Partners in Decisions About cfDNA

被引：8

作者：

Farrell, Ruth M. ^{[1
,2
]}

Mercer, MaryBeth ^{[3
]}

Agatisa, Patricia K. ^{[4
]}

Coleridge, Marissa B. ^{[5
]}

机构：

[1] Cleveland Clin, Res, OB GYN & Womens Hlth Inst, Ctr Bioeth, Cleveland, OH 44106 USA

[2] Cleveland Clin, Res, OB GYN & Womens Hlth Inst, Genom Med Inst, Cleveland, OH 44106 USA

[3] Cleveland Clin, Off Patient Experience, Cleveland, OH 44106 USA

[4] Cleveland Clin, OB GYN & Womens Hlth Inst, Cleveland, OH 44106 USA

[5] Cleveland Clin, Genom Med Inst, Cleveland, OH 44106 USA

来源：

QUALITATIVE HEALTH RESEARCH | 2019年 / 29卷 / 02期

关键词：

prenatal genetic testing; cell-free fetal DNA; decision-making; partners; prenatal; screening; genetics; genomics; qualitative; grounded theory; cross-sectional; midwest US; FETAL ANEUPLOIDY; DOWN-SYNDROME; DNA; IMPLEMENTATION; EXPERIENCES; MOTHERS;

D O I：

10.1177/1049732318796833

中图分类号：

R1 [预防医学、卫生学];

学科分类号：

1004 ; 120402 ;

摘要：

Cell-free fetal DNA (cfDNA) screening is used to identify the presence of fetal genetic variants early in pregnancy. Patients' informed decision-making is central to the success of this new screen in clinical practice. Although research has focused on pregnant women's decision-making, little is known about partners' role and preferences as a member of the decision-making dyad. Using a grounded theory approach, this study analyzed 23 in-depth interviews to examine partners' perspectives about cfDNA screening and preferences with respect to their role in the decision-making process. Participants wished to be actively involved in testing decisions. They articulated a distinct set of needs and preferences in the decision-making process. Such involvement was hindered by several biological and logistical barriers. This study demonstrates the need to develop mechanisms that foster informed decision-making for cfDNA screening and related new reproductive genetic technologies that focus on not just the pregnant woman but also the decision-making dyad that includes her partner as well.

引用

页码：211 / 221

页数：11

共 38 条

[11] Corbin J.M., 2008, Basics of qualitative research: techniques and procedures for developing grounded theory, Vthird, DOI 10.4135/9781452230153
[12] Non-invasive prenatal diagnosis for aneuploidy: toward an integral ethical assessment
de Jong, Antina
Dondorp, Wybo J.
Frints, Suzanna G. M.
de Die-Smulders, Christine E. M.
de Wert, Guido M. W. R.
[J]. HUMAN REPRODUCTION, 2011, 26 (11) : 2915 - 2917
[13] Should Non-Invasiveness Change Informed Consent Procedures for Prenatal Diagnosis?
Deans, Zuzana
Newson, Ainsley J.
[J]. HEALTH CARE ANALYSIS, 2011, 19 (02) : 122 - 132
[14] Much more than a gene: hereditary breast and ovarian cancer, reproductive choices and family life
Dekeuwer, Catherine
Bateman, Simone
[J]. MEDICINE HEALTH CARE AND PHILOSOPHY, 2013, 16 (02) : 231 - 244
[15] Men's experiences of antenatal screening: A metasynthesis of the qualitative research
Dheens, Sandi
Metcalfe, Alison
Williams, Robert Alan
[J]. INTERNATIONAL JOURNAL OF NURSING STUDIES, 2013, 50 (01) : 121 - 133
[16] Ecology Global Network, 2011, WORLD BIRTH DEATH RA
[17] A qualitative study of mothers' and fathers' experiences of routine ultrasound examination in Sweden
Ekelin, M
Crang-Svalenius, E
Dykes, AK
[J]. MIDWIFERY, 2004, 20 (04) : 335 - 344
[18] Farrell R., 2016, ETHICS, V2, P383, DOI [10.1016/j.jemep.2016.05.002, DOI 10.1016/J.JEMEP.2016.05.002]
[19] It's More Than a Blood Test: Patients' Perspectives on Noninvasive Prenatal Testing
Farrell, Ruth M.
Mercer, Mary Beth
Agatisa, Patricia K.
Smith, Marissa B.
Philipson, Elliot
[J]. JOURNAL OF CLINICAL MEDICINE, 2014, 3 (02): : 614 - 631
[20] Clinical implementation of noninvasive prenatal testing among maternal fetal medicine specialists
Haymon, Lori
Simi, Eve
Moyer, Kelly
Aufox, Sharon
Ouyang, David W.
[J]. PRENATAL DIAGNOSIS, 2014, 34 (05) : 416 - 423

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