Preconceptional genetic carrier testing and the commercial offer directly-to-consumers

被引:59
作者
Borry, Pascal [1 ,2 ,3 ,4 ]
Henneman, Lidewij [2 ,3 ]
Lakeman, Phillis [2 ,3 ]
ten Kate, Leo P. [2 ,3 ]
Cornel, Martina C. [2 ,3 ]
Howard, Heidi C. [1 ]
机构
[1] Katholieke Univ Leuven, Ctr Biomed Eth & Law, B-3000 Louvain, Belgium
[2] Vrije Univ Amsterdam, Med Ctr, Dept Clin Genet, NL-1007 MB Amsterdam, Netherlands
[3] EMGO Inst Hlth & Care Res, NL-1007 MB Amsterdam, Netherlands
[4] Vrije Univ Amsterdam, Med Ctr, Dept Med Humanities, NL-1007 MB Amsterdam, Netherlands
关键词
preconception care; carrier testing; direct-to-consumer; CYSTIC-FIBROSIS; SCREENING-PROGRAMS; GAUCHER-DISEASE; POPULATION; ATTITUDES; IMPACT; CARE; THALASSEMIA; BENEFIT;
D O I
10.1093/humrep/der042
中图分类号
R71 [妇产科学];
学科分类号
100211 ;
摘要
Recently, a number of commercial companies are offering preconceptional carrier tests directly-to-consumers. This offer raises a number of concerns and issues above and beyond those encountered with preconceptional tests offered within the traditional health care setting. In order to bring some of these issues to light and to initiate dialogue on this topic, this article discusses the following issues: the current offer of preconceptional carrier tests (until the end of 2010) through online commercial companies; the implications for the informed consent procedure and the need for good information; the need for medical supervision and follow-up; and the appropriate use of existing resources. The article concludes with some reflections about the potential sustainability of the offer of preconceptional carrier tests directly-to-consumers.
引用
收藏
页码:972 / 977
页数:6
相关论文
共 46 条
[11]  
European Society of Human Genetics, 2003, Eur J Hum Genet, V11 Suppl 2, pS5
[12]  
European Society of Human Genetics, 2010, EUR J HUM GENET, DOI [DOI 10.1038/EJHG.2010.129, 10.1038/ejhg.2010.129]
[13]   Population genetic screening programmes:: principles, techniques, practices, and policies [J].
Godard, B ;
ten Kate, L ;
Evers-Kiebooms, G ;
Aymé, S .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2003, 11 (Suppl 2) :S49-S87
[14]  
Grody Wayne W., 2001, Genetics in Medicine, V3, P149, DOI 10.1097/00125817-200103000-00010
[15]  
Health Council of the Netherlands, 2008, SCREENING HOPE HYPE
[16]   Preconception cystic fibrosis carrier couple screening: Impact, understanding, and satisfaction [J].
Henneman, L ;
Bramsen, I ;
Van der Ploeg, HM ;
Ten Kate, LP .
GENETIC TESTING, 2002, 6 (03) :195-202
[17]   Participation preconceptional carrier couple screening:: characteristics, attitudes, and knowlege of both partners [J].
Henneman, L ;
Bramsen, I ;
van der Ploeg, HM ;
Adèr, HJ ;
van der Horst, HE ;
Gille, JJP ;
ten Kate, LP .
JOURNAL OF MEDICAL GENETICS, 2001, 38 (10) :695-703
[18]  
Honnor M, 2000, AM J MED GENET, V93, P198, DOI 10.1002/1096-8628(20000731)93:3<198::AID-AJMG7>3.0.CO
[19]  
2-Q
[20]   Direct-to-consumer genetic testing: more questions than benefits? [J].
Howard, Heidi C. ;
Borry, Pascal .
PERSONALIZED MEDICINE, 2008, 5 (04) :317-320