Genetic testing;
down syndrome;
right not to know;
moral dilemmas;
social invasiveness;
CELL-FREE DNA;
DIAGNOSIS;
AUTONOMY;
D O I:
10.1080/14636778.2020.1805305
中图分类号:
Q81 [生物工程学(生物技术)];
Q93 [微生物学];
学科分类号:
071005 ;
0836 ;
090102 ;
100705 ;
摘要:
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 "rightnotto 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.
机构:
Univ Wisconsin, Dept Nursing & Hlth Studies, 2420 Nicolet Dr, Green Bay, WI 54311 USAUniv Wisconsin, Dept Nursing & Hlth Studies, 2420 Nicolet Dr, Green Bay, WI 54311 USA
Jun, Myunghee
Thongpriwan, Vipavee
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机构:
Univ Wisconsin, Coll Nursing, 1921 E Hartford Ave, Milwaukee, WI 53211 USAUniv Wisconsin, Dept Nursing & Hlth Studies, 2420 Nicolet Dr, Green Bay, WI 54311 USA
Thongpriwan, Vipavee
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机构:
Choi, Jeeyae
Choi, Kyung Sook
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机构:
Chung Ang Univ, Coll Nursing, Dongjak Gu Heukseok Ro 84, Seoul 156756, South KoreaUniv Wisconsin, Dept Nursing & Hlth Studies, 2420 Nicolet Dr, Green Bay, WI 54311 USA
Choi, Kyung Sook
Anderson, Gwen
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机构:
Spark M Matsunaga Med Ctr, Vet Affairs Pacific Isl Healthcare Syst Res & Dev, 459 Patterson Rd, Honolulu, HI 96819 USAUniv Wisconsin, Dept Nursing & Hlth Studies, 2420 Nicolet Dr, Green Bay, WI 54311 USA
机构:
Nanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R ChinaNanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R China
Wang, Jing
Wang, Zhi-Wei
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机构:
Yangzhou Univ, Lianyungang Maternal & Child Hlth Hosp, Dept Med Genet, Lianyungang 222000, Peoples R ChinaNanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R China
Wang, Zhi-Wei
Zhou, Qin
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机构:
Nanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R ChinaNanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R China
Zhou, Qin
Zhang, Bin
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机构:
Nanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R ChinaNanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R China
Zhang, Bin
Yin, Ting
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机构:
Yangzhou Univ, Lianyungang Maternal & Child Hlth Hosp, Dept Med Genet, Lianyungang 222000, Peoples R ChinaNanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R China
Yin, Ting
Yu, Bin
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机构:
Nanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R ChinaNanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R China
Yu, Bin
Wang, Lei-Lei
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机构:
Yangzhou Univ, Lianyungang Maternal & Child Hlth Hosp, Dept Med Genet, Lianyungang 222000, Peoples R ChinaNanjing Med Univ, Changzhou Matern & Child Hlth Care Hosp, Dept Med Genet, Changzhou 213003, Peoples R China
机构:
Minist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, RussiaMinist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, Russia
Baranova, Elena
Zaiaeva, Elizaveta
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机构:
Minist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, RussiaMinist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, Russia
Zaiaeva, Elizaveta
Zobkova, Gaukhar
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机构:
LLC Evogen, Moscow, RussiaMinist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, Russia
Zobkova, Gaukhar
Zhuchenko, Lyudmila
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机构:
Minist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, RussiaMinist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, Russia
Zhuchenko, Lyudmila
Shelykalina, Svetlana
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机构:
Natl Res Med Univ, Minist Hlth Russia, Moscow, RussiaMinist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, Russia
Shelykalina, Svetlana
Izhevskaya, Vera
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机构:
Res Ctr Med Genet, Moscow, RussiaMinist Healthcare Russian Federat, Fed State Budgetary Educ Inst Further Profess Edu, Moscow, Russia