Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project.
Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project.
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DOI：
10.1038/s41436-018-0105-6
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发表时间：
2019-03
期刊：
影响因子：
--
通讯作者：
BabySeq Project Team
中科院分区：
文献类型：
--
作者：
Genetti CA;Schwartz TS;Robinson JO;VanNoy GE;Petersen D;Pereira S;Fayer S;Peoples HA;Agrawal PB;Betting WN;Holm IA;McGuire AL;Waisbren SE;Yu TW;Green RC;Beggs AH;Parad RB;BabySeq Project Team
新生儿基因组测序（nGS）在改善儿科护理方面具有巨大潜力。父母对基因组学的兴趣和关注相对未被探索。了解为什么父母拒绝nGS的研究同意可能会揭示实施障碍。我们评估了父母对nGS在健康婴儿和ICU托儿所环境中的随机试验的兴趣。感兴趣的家庭在同意之前与遗传顾问一起参加了信息登记会议（ES）。分析了参与率下降的原因和社会人口统计学关联。在3，860个符合条件的家庭中，10%参加了ES，其中67%入学。在1，760个询问下降原因的家庭中，58%对研究不感兴趣。在499个考虑研究的家庭中，在ES之前下降的主要原因包括繁重的研究后勤（48%），产后感到不知所措（17%），以及对基因检测缺乏兴趣/不适（17%）。ES后的下降更经常引用对隐私/可保性（41%）和不确定/不利结果（23%）的担忧。对研究和研究后勤的兴趣低是产后入组的主要初始障碍，并且可能是许多产后研究工作的共性。在ES之后，对隐私和结果影响的担忧最常被引用。了解父母对研究nGS的担忧可能会为将来将nGS整合到新生儿筛查，预测性检测和儿科诊断中提供信息。
Newborn genomic sequencing (nGS) has great potential to improve pediatric care. Parental interest and concerns about genomics are relatively unexplored. Understanding why parents decline research consent for nGS may reveal implementation barriers. We evaluated parental interest in a randomized trial of nGS in well-baby and ICU nursery settings. Interested families attended an informational enrollment session (ES) with a genetic counselor prior to consenting. Reason(s) for declining participation and sociodemographic associations were analyzed. Of 3,860 eligible approached families, 10% attended ES, 67% of whom enrolled. Of 1,760 families queried for decline reasons, 58% were uninterested in research. Among 499 families considering research, principal reasons for decline prior to ES included burdensome study logistics (48%), feeling overwhelmed postpartum (17%), and lack of interest/discomfort with genetic testing (17%). Decliners after ES more often cited concerns about privacy/insurability (41%) and uncertain/unfavorable results (23%). Low interest in research and study logistics were major initial barriers to postpartum enrollment and are likely generic to many postpartum research efforts. Concerns over privacy and result implications were most commonly cited in decliners after ES. Understanding parental concerns around research nGS may inform future integration of nGS into newborn screening, predictive testing, and pediatric diagnostics.
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影响因子：
2.2
作者：
Lernmark B;Johnson SB;Vehik K;Smith L;Ballard L;Baxter J;McLeod W;Roth R;Simell T
通讯作者：
Simell T
影响因子：
8
作者：
Skinner, Debra;Choudhury, Summer;Bailey, Donald B., Jr.
通讯作者：
Bailey, Donald B., Jr.
影响因子：
8
作者：
Waisbren, Susan E.;Weipert, Caroline M.;Green, Robert C.
通讯作者：
Green, Robert C.
影响因子：
5.3
作者：
Petrikin, Josh E.;Cakici, Julie A.;Kingsmore, Stephen F.
通讯作者：
Kingsmore, Stephen F.
影响因子：
2.4
作者：
Holm IA;Agrawal PB;Ceyhan-Birsoy O;Christensen KD;Fayer S;Frankel LA;Genetti CA;Krier JB;LaMay RC;Levy HL;McGuire AL;Parad RB;Park PJ;Pereira S;Rehm HL;Schwartz TS;Waisbren SE;Yu TW;BabySeq Project Team;Green RC;Beggs AH
通讯作者：
Beggs AH