Information and informed consent for neonatal screening: Opinions and preferences of parents
Information and informed consent for neonatal screening: Opinions and preferences of parents
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DOI：
10.1111/j.1523-536x.2007.00176.x
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发表时间：
2007-09-01
影响因子：
2.5
通讯作者：
Verweij, Marcel
中科院分区：
文献类型：
--
作者：
Detmar, Symone;Hosli, Esther;Verweij, Marcel
背景：目前的新生儿筛查计划(脚后跟穿刺法)包括从荷兰几乎每个新生儿身上取几滴血，以确定孩子是否患有三种先天性疾病之一：苯丙酮尿症、先天性甲状腺功能减退或肾上腺生殖综合征。这项研究调查了父母和未来父母关于新生儿筛查的信息和同意以及该计划可能扩大的偏好和看法。方法：与未来的父母、孩子健康的父母和孩子患有疾病的父母进行了7次焦点小组讨论，无论是现在还是将来都有可能进行筛查(总共36名参与者)。讨论内容被录音、转录和分析。结果：家长目前并不清楚脚后跟刺痛涉及到什么。然而，他们认为这是一种常规程序，并不考虑拒绝的可能性。如果脚后跟刺伤计划要扩大，父母们希望更早地被告知，最好是在怀孕期间。此外，大多数家长倾向于选择退出同意的方式。结论：如果要扩大新生儿筛查计划，父母更希望在怀孕期间提供有关该计划的信息。此外，他们倾向于选择退出同意的方法，条件是筛查的目的是防止它-可逆的伤害。如果扩大筛查的目的，父母在这个问题上意见不一。
Background: The current neonatal screening program ("the heel prick") involves taking a few drops of blood from almost every newborn in the Netherlands to determine whether the child is suffering from one of three congenital disorders: phenylketonuria, congenital hypothyroid, or adrenogenital syndrome. This study investigated the preferences and views of parents and future parents with respect to information about; and consent to, neonatal screening and the possible expansion of the program. Methods: Seven focus group discussions took place with future parents, parents with a healthy child, and parents with children affected by disorders for which screening is possible, now or in the future (total of 36 participants). The discussions were audiotaped, transcribed, and analyzed for content. Results: Parents were not well informed about what the heel prick involves at present. Nevertheless, they see it as a routine procedure and do not think about the possibility of refusing it. If the heel-prick program were to be expanded, parents would like to be informed earlier preferably during pregnancy. In addition, most parents preferred an opt-out consent approach. Conclusions: If the neonatal screening program is to be expanded, parents would prefer for information about the program be given during pregnancy. In addition, they preferred an opt-out consent approach, on condition that screening was for the purpose of preventing it-reversible harm. Parental opinion was divided on this issue if the aim of screening were to be widened.