Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?
Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?
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DOI：
10.1159/000349924
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发表时间：
2013
影响因子：
1.7
通讯作者：
Ziegenfuss JY
中科院分区：
文献类型：
--
作者：
Ridgeway JL;Han LC;Olson JE;Lackore KA;Koenig BA;Beebe TJ;Ziegenfuss JY
生物库是遗传和流行病学研究的重要资源，但如果接受招募邀请的人与不接受邀请的人在与健康相关的调查中重要的属性方面存在系统性差异，可能会产生偏见。为了了解以临床为基础的生物样本生物库中的潜在偏见，包括与电子病历信息相关的遗传数据，我们比较了参与者、无应答者和拒绝者中的患者特征和自我报告信息。我们还比较了拒绝参与者和无反应者之间不参与的原因，以阐明减少不参与和任何未被发现的偏见的潜在途径。我们向1600名即将在梅奥诊所(明尼苏达州罗切斯特市)预约的成年患者邮寄招募信息包，并记录他们的参与状态。管理数据被用来比较不同组的特征。我们通过电话采访了26名无答者和26名拒绝者，以收集自我报告的信息，包括不参与的原因。参与者被要求完成一份邮寄的调查问卷。参与比例为26.2%(n=419)，拒绝比例为12.1%(n=193)，无反应比例为61.8%(n=988)。在多变量分析中，性别、年龄、居住地区和种族/民族与参与显著相关。这两个群体在寻找信息的行为和研究经验方面存在差异。拒绝的人更多地提到隐私问题，而不回答的人更多地认为时间限制是不参与的原因。为了推动基因组医学的发展，需要大型的、有代表性的生物库。患者特征和无反应之间的显著关联，以及拒绝应答者和无应答者之间的系统差异，可能会导致偏见。过度抽样或招募变化，包括更加重视隐私保护和参与负担，可能是增加代表性较低群体的参与所必需的。
Biobanks are an important resource for genetic and epidemiologic research, but bias may be introduced if those who accept the recruitment invitation differ systematically from those who do not in attributes important to health-related investigations. To understand potential bias in a clinic-based biobank of biological samples, including genetic data linked to Electronic Medical Record information, we compared patient characteristics and self-reported information among participants, non-responders, and refusers. We also compared reasons for non-participation between refusers and non-responders to elucidate potential pathways to reduce non-participation and any uncovered bias. We mailed recruitment packets to 1600 adult patients with upcoming appointments at Mayo Clinic (Rochester, MN) and recorded their participation status. Administrative data were used to compare characteristics across groups. We used phone interviews with 26 non-responders and 26 refusers to collect self-reported information, including reasons for non-participation. Participants were asked to complete a mailed questionnaire. We achieved 26.2% participation (n=419) with 12.1% refusing (n=193) and 61.8% non-response (n=988). In multivariate analyses, sex, age, region of residence, and race/ethnicity were significantly associated with participation. The groups differed in information-seeking behaviors and research experience. Refusers more often cited privacy concerns while non-responders more often identified time constraints as the reason for non-participation. For genomic medicine to advance, large, representative biobanks are required. Significant associations between patient characteristics and nonresponse, as well as systematic differences between refusers and nonresponders, could introduce bias. Oversampling or recruitment changes, including heightened attention to privacy protection and participation burden, may be necessary to increase participation among less-represented groups.
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影响因子：
2
作者：
McCarty, Catherine A.;Chapman-Stone, Donna;Fost, Norman
通讯作者：
Fost, Norman
影响因子：
1.6
作者：
Goddard, Katrina A. B.;Smith, K. Sabina;Johnson, Cheryl
通讯作者：
Johnson, Cheryl
影响因子：
4.4
作者：
Kettis-Lindblad, Asa;Ring, Lena;Hansson, Mats G.
通讯作者：
Hansson, Mats G.
DOI：
10.1097/gim.0b013e3181e38f9e
发表时间：
2010-08
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
Trinidad SB;Fullerton SM;Bares JM;Jarvik GP;Larson EB;Burke W
通讯作者：
Burke W
影响因子：
120.7
作者：
Beskow, LM;Burke, W;Khoury, MJ
通讯作者：
Khoury, MJ