Citizens' Values Regarding Research With Stored Samples From Newborn Screening in Canada

被引：37

作者：

Bombard, Yvonne ^{[1
]}

Miller, Fiona A. ^{[1
]}

Hayeems, Robin Z. ^{[1
]}

Carroll, June C. ^{[2
]}

Avard, Denise ^{[3
]}

Wilson, Brenda J. ^{[4
]}

Little, Julian ^{[4
]}

Bytautas, Jessica P. ^{[1
]}

Allanson, Judith ^{[5
,6
]}

Axler, Renata ^{[1
]}

Giguere, Yves ^{[8
]}

Chakraborty, Pranesh ^{[6
,7
]}

机构：

[1] Univ Toronto, Inst Hlth Policy Management & Evaluat, Toronto, ON M5T 3M6, Canada

[2] Univ Toronto, Mt Sinai Hosp, Dept Family & Community Med, Toronto, ON M5T 3M6, Canada

[3] McGill Univ, Dept Human Genet, Ctr Genom & Policy, Montreal, PQ, Canada

[4] Univ Ottawa, Dept Epidemiol & Community Med, Ottawa, ON, Canada

[5] Childrens Hosp Eastern Ontario, Dept Genet, Ottawa, ON K1H 8L1, Canada

[6] Univ Ottawa, Dept Pediat, Ottawa, ON K1N 6N5, Canada

[7] Univ Ottawa, Childrens Hosp Eastern Ontario, Ottawa, ON, Canada

[8] Univ Laval, CHUQ, Dept Med Biol, Quebec City, PQ, Canada

来源：

PEDIATRICS | 2012年 / 129卷 / 02期

关键词：

newborn screening; storage; blood spots; policy; public engagement; public health; research; BLOOD SPOTS; INFORMED-CONSENT; BIOLOGICAL SAMPLES; GENETIC RESEARCH; PARENTS; STORAGE;

D O I：

10.1542/peds.2011-2572

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

OBJECTIVES: Newborn screening (NBS) programs may store bloodspot samples and use them for secondary purposes. Recent public controversies and lawsuits over storage and secondary uses underscore the need to engage the public on these issues. We explored Canadian values regarding storage and use of NBS samples for various purposes and the forms of parental choice for anonymous research with NBS samples. METHODS: We conducted a mixed-methods, public engagement study comprising 8 focus groups (n = 60), an educational component, deliberative discussion, and pre- and post-questionnaires assessing knowledge and values toward storage and parental choice. RESULTS: Canadian citizens supported the storage of NBS samples for quality control, confirmatory diagnosis, and future anonymous research (>90%). There was broad support for use of NBS samples for anonymous research; however, opinions were split about the extent of parental decision-making. Support for a "routinized" approach rested on trust in authorities, lack of concern for harms, and an assertion that the population's interest took priority over the interests of individuals. Discomfort stemmed from distrust in authorities, concern for harms, and prioritizing individual interests, which supported more substantive parental choice. Consensus emerged regarding the need for greater transparency about the storage and secondary use of samples. CONCLUSIONS: Our study provides novel insights into the values that underpin citizens' acceptance and discomfort with routine storage of NBS samples for research, and supports the need to develop well-designed methods of public education and civic discourse on the risks and benefits of the retention and secondary use of NBS samples. Pediatrics 2012;129:239-247

引用

页码：239 / 247

页数：9

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