Bayefsky Michelle J, White Amina, Wakim Paul, Hull Sara Chandros, Wasserman David, Chen Stephanie, Berkman Benjamin E
Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD, USA.
University of North Carolina, Department of Obstetrics and Gynecology, Chapel Hill, NC, USA.
Prenat Diagn. 2016 Dec;36(13):1250-1256. doi: 10.1002/pd.4968. Epub 2016 Dec 6.
Given public demand for genetic information, the potential to perform prenatal whole-genome sequencing (PWGS) non-invasively in the future, and decreasing costs of whole-genome sequencing, it is likely that OB/GYN practice will include PWGS. The goal of this project was to explore OB/GYNs' views on the ethical issues surrounding PWGS and their preparedness for counseling patients on its use.
A national survey was administered to 2500 members of American Congress of Obstetricians and Gynecologists.
A total of 1114 respondents completed the survey (response rate = 45%). OB/GYNs are most concerned with ordering non-medical fetal genetic information, are worried about increasing parental anxiety, and feel it is appropriate to be directive when counseling parents about PWGS. Furthermore, most OB/GYNs have limited knowledge of genetics, rely heavily on genetic counselors and would like more guidance regarding the clinical adoption of PWGS.
OB/GYNs do not completely accept or reject PWGS, but a substantial number have significant ethical and practical concerns. They are most concerned with issues that will directly affect their practices and interactions with patients, such as increasing parental anxiety and costs of care. Professional guidance would be instrumental in directing the adoption of PWGS and alleviating the ethical burden posed by PWGS on individual OB/GYNs. Published 2016. This article is a U.S. Government work and is in the public domain in the USA.
鉴于公众对基因信息的需求、未来非侵入性进行产前全基因组测序(PWGS)的可能性以及全基因组测序成本的下降,妇产科临床实践可能会纳入PWGS。本项目的目标是探讨妇产科医生对围绕PWGS的伦理问题的看法以及他们为患者提供PWGS使用咨询的准备情况。
对美国妇产科医师学会的2500名成员进行了一项全国性调查。
共有1114名受访者完成了调查(回复率=45%)。妇产科医生最关注订购非医学胎儿基因信息,担心增加父母的焦虑,并认为在为父母提供PWGS咨询时进行指导是合适的。此外,大多数妇产科医生对遗传学知识有限,严重依赖遗传咨询师,并且希望获得更多关于PWGS临床应用的指导。
妇产科医生没有完全接受或拒绝PWGS,但相当一部分人存在重大的伦理和实际问题。他们最关注的是将直接影响其临床实践以及与患者互动的问题,例如增加父母的焦虑和护理成本。专业指导将有助于指导PWGS的应用并减轻PWGS给个体妇产科医生带来的伦理负担。发表于2016年。本文是美国政府作品,在美国属于公共领域。