Qiu Shanshan, Song Yunhai, Wang Jing, Gao Pingping, Chen Jing, Chen Ru, Bao Nan, Liu Shijian
Pediatric Translational Medicine Institute, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
Department of Pediatric Neurosurgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
Biopreserv Biobank. 2018 Dec;16(6):402-410. doi: 10.1089/bio.2018.0051. Epub 2018 Oct 26.
To examine the factors that may influence Chinese parent's willingness to donate their children's biospecimens for use in pediatric research. Parents or caregivers of the patients in the neurosurgery ward, oncological surgery ward, and internal medical wards at Shanghai Children's Medical Center were recruited during the period of March 1, 2016 to July 8, 2018. The questionnaire included the willingness to provide consent for donating their children's clinical biospecimens, their attitudes toward and motivations for donating their children's clinical biospecimens, opinions of contributing specimens, and an ethical consideration for their children's future willingness to donate biospecimens. Participants' demographic data and children's basic information were collected. The majority of the participants agreed to donate the patients' biospecimens for research. Parents with pronounced religious beliefs, less education, who had only one child, child with a more severe disease, and living in an urban district were associated with negative attitudes toward biospecimen donation, but none of other parents' sociodemographic characteristics and some of the children's basic characteristics disclosed significant differences in donation attitudes. In five different types of biospecimens, parents were more reluctant to donate specific blood biospecimens. Physical pain and privacy protection were of most concern to parents when it came to donating their child's biospecimens. It was widely believed in parents that reconsent would be necessary for the 18-year-old adolescent. Our findings explored the factors that were of greatest worry to parents related to parents' willingness to donate their child's biospecimens in China. We recommend greater patient explanation to enhance the participant's engagement in the biospecimen donation, and the adolescent's attitude toward biospecimen donation needs further consideration.
为研究可能影响中国父母捐赠其子女生物样本用于儿科研究意愿的因素。2016年3月1日至2018年7月8日期间,招募了上海儿童医学中心神经外科病房、肿瘤外科病房和内科病房患者的父母或照料者。问卷包括提供同意捐赠其子女临床生物样本的意愿、对捐赠其子女临床生物样本的态度和动机、对贡献样本的看法以及对其子女未来捐赠生物样本意愿的伦理考量。收集了参与者的人口统计学数据和儿童的基本信息。大多数参与者同意捐赠患者的生物样本用于研究。有明显宗教信仰、受教育程度较低、只有一个孩子、孩子病情较重以及居住在市区的父母对生物样本捐赠持消极态度,但其他父母的社会人口学特征和一些儿童的基本特征在捐赠态度上均未显示出显著差异。在五种不同类型的生物样本中,父母更不愿意捐赠特定的血液生物样本。在捐赠孩子的生物样本时,身体疼痛和隐私保护是父母最关心的问题。父母普遍认为,18岁青少年需要再次征得同意。我们的研究结果探讨了在中国与父母捐赠其子女生物样本意愿相关的父母最担心的因素。我们建议加强对患者的解释,以提高参与者对生物样本捐赠的参与度,并且青少年对生物样本捐赠的态度需要进一步考虑。