Cunningham Shannon, O'Doherty Kieran C, Sénécal Karine, Secko David, Avard Denise
University of Alberta, Edmonton, Alberta, Canada.
J Community Genet. 2015 Apr;6(2):117-28. doi: 10.1007/s12687-014-0206-0. Epub 2014 Dec 23.
Recently, public concerns have been expressed regarding the non-consented storage and secondary research uses of residual newborn bloodspot (RBS) samples. The purpose of this paper is to examine public responses to the storage and secondary uses of RBS that can be identified through analysis of media, legal cases, and documented public engagement activities. Coverage in the examined print media confirmed the importance of RBS to journalists and those people who expressed their concerns to these journalists. Several lawsuits, brought by parents concerned about the storage of newborn bloodspots, placed the practice of storing NBS into the spotlight. This resulted in controversial debates and the mandatory destruction of millions of samples. Analysis of public engagement activities across several jurisdictions indicated that across (inter)national boundaries there are common elements to what is perceived as inappropriate governance of RBS. Public concerns were grouped into five main themes: trust, transparency, confidentiality, ownership, and stigmatization/discrimination. The results of our analysis help to make a compelling case for placing citizens at the center of the debate and developing policy about the storage and secondary uses of newborn bloodspots.
最近，公众对未经同意存储新生儿残余血斑（RBS）样本及二次研究用途表达了担忧。本文旨在通过分析媒体报道、法律案件及有记录的公众参与活动，研究公众对RBS存储及二次使用的反应。经调查的平面媒体报道证实了RBS对记者以及向这些记者表达担忧的人的重要性。几起由担心新生儿血斑存储问题的家长提起的诉讼，将新生儿血斑存储行为置于聚光灯下。这引发了有争议的辩论，并导致数百万样本被强制销毁。对多个司法管辖区公众参与活动的分析表明，在（跨）国界范围内，对于被视为对RBS治理不当的情况存在共同因素。公众担忧主要分为五个主题：信任、透明度、保密性、所有权以及污名化/歧视。我们的分析结果有助于有力地证明应将公民置于关于新生儿血斑存储及二次使用的辩论中心并制定相关政策。
