Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research

Sebastian Schleidgen; Alma Husedzinovic; Dominik Ose; Christoph Schickhardt; Christof von Kalle; Eva C. Winkler

首页> 外文期刊>Knowledge Technology & Policy >Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research

【24h】

Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research

机译：在最小风险与大于最小风险之间：研究参与者和肿瘤学家如何评估数据共享和基因组研究中重新识别的风险

获取原文

获取原文并翻译 | 示例

掌桥外文数据库（机构版） >>

开具论文收录证明 >>

文献代查 >>

页面导航

摘要
著录项
相似文献
相关主题

摘要

Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative focus group study at the National Center for Tumor Diseases (NCT). Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients' prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest (1) comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, (2) establishing independent governance entities in order to minimize the informational risks of genomic research, and (3) implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research.

机译：基因组研究人员之间的数据共享得到了促进，因为它有可能促进我们对癌症分子基础的理解。但是，随着基因组数据的共享，重新确定研究参与者的风险，揭示个人基因组信息和数据滥用可能会增加。这项研究旨在探讨患者和医师在肿瘤学中对他们因参与整个基因组研究而产生的信息风险的评估的看法，以改善知情同意程序。为此，我们在国家肿瘤疾病中心（NCT）进行了定性焦点小组研究。患者和肿瘤科医生根据职业状况，年龄和患者预后的背景因素，评估信息风险为最小风险还是大于最小风险。有趣的是，只要实施了某些信息和制度保障措施，即使是承担更大风险的患者也不会参与基因组研究。此外，他们期望全面披露基因组数据共享所带来的风险。这些结果表明（1）向基因组研究的潜在研究参与者全面披露基因组研究的风险，以促进风险评估和合理的决策；（2）建立独立的治理实体，以最大程度地降低基因组研究的信息风险；以及（ 3）实施数据共享政策，为参与基因组研究的医师和研究人员提供指导。

著录项

来源
《Knowledge Technology & Policy》 |2019年第1期|39-55|共17页
作者
Sebastian Schleidgen; Alma Husedzinovic; Dominik Ose; Christoph Schickhardt; Christof von Kalle; Eva C. Winkler;
展开▼
作者单位

Department of Nursing Science, University of Philosophy and Theology, Pallottistrasse 3, 56179 Vallendar, Germany;

Department of Medical Oncology, Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Im Neuenheimer Feld 460, 69120 Heidelberg, Germany;

Department of Population Health Sciences, School of Medicine, University of Utah, Williams Building, 295 Chipeta Way, Salt Lake City, UT 84108, USA;

Department of Medical Oncology, Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Im Neuenheimer Feld 460, 69120 Heidelberg, Germany;

Department of Translational Oncology, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Im Neuenheimer Feld 460, 69120 Heidelberg, Germany,Heidelberg Center for Personalized Oncology, DKFZ-HIPO, German Cancer Research Center (DKFZ), Im Neuenheimer Feld 580, 69120 Heidelberg, Germany;

Department of Medical Oncology, Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases (NCT), Heidelberg University Hospital, Im Neuenheimer Feld 460, 69120 Heidelberg, Germany;

展开▼
收录信息
原文格式 PDF
正文语种 eng
中图分类
关键词
Genomic research; Data sharing; Risk of re-identification; Data misuse; Risk assessment; Policy making;

机译：基因组研究;数据共享;重新识别的风险;数据滥用;风险评估;政策制作;

相似文献

外文文献
中文文献
专利

1. The second edition of the Society of Gynecologic Oncologists Surgical Postgraduate Courses supplementThe annual meetings of the Society of Gynecologic Oncologists (SGO) continue to highlight surgical education by providing several hands-on postgraduate courses that focus on cutting-edge surgical techniques used in minimally invasive approaches, fertility-sparing surgery, as well as open radical surgery. The cadaveric dissections and surgical demonstrations have been well received by participants [J] . Nadecm R. Abu Rustum, Pedro T. Ramirez, Dennis S. Chi Gynecologic Oncology: An International Journal . 2008,第2Suppla1期

机译：妇科肿瘤学家协会外科研究生课程第二版增刊妇科肿瘤学家协会（SGO）的年会继续通过提供一些动手的研究生课程来强调外科教育，这些课程侧重于微创方法中使用的前沿外科技术，保留生育力的手术以及根治性手术。尸体解剖和外科手术示范得到了与会者的好评
2. Privacy Risks from Genomic Data-Sharing Beacons [J] . Shringarpure Suyash S., Bustamante Carlos D. The American Journal of Human Genetics . 2015,第5期

机译：基因组数据共享信标带来的隐私风险
3. Reoperative minimal access aortic valve surgery: minimal mediastinal dissection and minimal injury risk. [J] . Tabata M, Khalpey Z, Shekar PS, The Journal of Thoracic and Cardiovascular Surgery . 2008,第6期

机译：再手术微创主动脉瓣手术：纵隔解剖最少，受伤风险最小。
4. Desanding at the Wellhead for Optimal Well Productivity and Minimal Risks to Surface Facilities [C] . A. O. Opawale, S. Arreola, K. Ciprick Abu Dhabi International Petroleum Exhibition Conference . 2016

机译：在井口的裂缝以获得最佳的井生产力和表面设施的风险最小
5. Should routine childhood immunizations serve as an exemplar of minimal risk in United States regulation of research involving children? A closer look at the minimal risk threshold [D] . McBay, Marian Yagel. 2001

机译：在美国有关儿童研究的法规中，常规的儿童免疫接种是否应作为最小风险的典范？仔细研究最小风险阈值
6. Correction: Assessing minimal medical statistical literacy using the Quick Risk Test: a prospective observational study in Germany [O] . 2018

机译：更正：使用快速风险测试评估最低的医学统计学素养：德国的一项前瞻性观察性研究
7. Poster Session 3The imaging examination and quality assessmentP626Value of mitral and tricuspid annular displacement to assess the interventricular systolic relationship in severe aortic valve stenosis : a Pilot studyP627Follow-up echocardiography in asymptomatic valve disease: assessing the potential economic impact of the European and American guidelines in a dedicated valve clinic, compared to standard care.P628The tricuspid valve: identification of optimal view for assessing for prolapseP629Right atrial volume by two-dimensional echocardiography in healthy subjectsP630Disturbance of inter and intra atrial conduction assessed by tissue doppler imaging in patients with medicaly controlled hypertension and prehypertension.P631Liver stiffness by shear wave elastography, new noninvasive and quantitative tool for acute variation estimation of central venous pressure in real-time?P632Weak atrial kick contribution is associated with a risk for heart failure decompensationP633Usefulness of wave intensity analysis in predicting the response to cardiac resynchronization therapyP634Early subclinical left ventricular systolic and diastolic dysfunction in gestational hypertension and preeclampsiaP635Clinical comparison of three different echocardiographic methods for left ventricular ejection fraction and LV end diastolic volume measurementP636Assessment of right ventricular-arterial coupling parameters by 3D echocardiography in patients with pulmonary hypertension receiving specific vasodilator therapyP637Prediction of right ventricular failure after left ventricular assist device implant: assessing usefulness of standard and strain echocardiographyP638Kinematic analysis of diastolic function using the novel freely available software Echo E-waves - feasibility and reproducibilityP639Evaluation of coronary flow velocity by Doppler echocardiography in the treatment of hypertension with the ARB: correlation to the histological cardiac fibrosisP640The clinical significance of limited apical ischaemia and the prognostic value of stress echocardiography - A contemporary study from a high volume centerP641Effects of intermediate stenosis of left anterior descending coronary artery on survival in patients with chronic total occlusion of right coronary arteryP642Left ventricular remodeling after a first myocardial infarction in patients with preserved ejection fraction at dischargeP643Left atrial size and acute coronary syndromes. Let is make simple.P644Influence of STEMI reperfusion strategy on systolic and diastolic functionP645Aortic valve resistance risk-stratifies low-gradient severe aortic stenosisP646Does permanent pacemaker implantation complicate the prognosis of patients after transcatheter aortic valve implantation?P647Influence of metabolic syndrome and diabetes on progression of calcific aortic valve stenosis - The COFRASA - GENERAC StudyP648Low referral for aortic valve replacement accounts for worse long-term outcome in low versus high gradient severe aortic stenosis with preserved ejection fractionP649The impact of right ventricular function from aortic valve replacement: A randomised study comparing minimally invasive aortic valve surgery and conventional open heart surgery [O] . T. Ota, DNS Senaratne, NK. Preston, 2016

机译：海报课程3年度成像检查和质量评估P626尺寸二尖瓣环形位移，评估严重主动脉瓣狭窄中的间隔收缩系统关系：无症状瓣膜病的先导术627推翻超声心动图：评估欧洲和美国指南的潜在经济影响专用阀门诊所，与标准Care.P628相比，Tricuspid阀门：鉴定通过在医疗主题的Hystantsp630中，通过组织多普勒成像在医疗和术语中的癌细胞癌和术语患者进行评估，通过二维超声心动图进行评估的最佳视图。 .p631抗剪力波弹性凝视，新的非侵入性和定量工具，用于实时急性变异估计中央静脉压力的急性变化？P632Weak心房踢贡献与心力衰竭分数的风险有关波强度分析预测心脏重新同步的响应治疗634亚临床左心室收缩和舒张性功能障碍，妊娠期高血压分数的三种不同超声心动仪和LV端舒张型方法的比较，3D超声心动图右心室凝血率测量3636分类在患有肺动脉高压的患者中，左心室辅助装置植入后接受特异性血管扩张器治疗637预测右心室失效：评估使用新颖的自由可用的软件回声电子波的标准和菌株超声心动图338云分析的标准和菌株超声心动图638云分析 - 可行性和再现冠状动脉速度的可行性和再现率。多普勒超声心动图在治疗高血压与arb中：相关性与组织学心肌纤维化p640的相关性李的临床意义紧张的缺血性和应激超声心动图的预后价值 - 一种高批量中心的当代研究，来自左前期下降冠状动脉中间狭窄患者中间狭窄患者急性闭塞患者患者患者患者第一次心肌梗死后的慢性冠状动脉间梗死患者存活的现代研究排出的射血分数在排出的343夜心房尺寸和急性冠状动脉综合征处。让令人生意的是STEMIESTOMELETERIC功能的STEMIEST.P644。在收缩和舒张功能上进行STEMI和舒张型阀门电阻危险危险率低梯度严重主动脉鼻窦646doe永久性起搏器植入使经截觉管主动脉瓣植入后的患者预后复杂化吗？P647型综合征和糖尿病患者的进展主动脉瓣狭窄 - Cofrasa - Generac STOMP648LOW用于主动脉瓣膜置换术的转诊表明，低梯度严重主动脉狭窄的更差的长期结果，并具有射血瓣膜置换术射精术中的抗锻术术造成的影响：随机研究比较微创主动脉阀门手术和常规开放式心脏手术
8. Minimal-Burden Risk Adjusters for the Medicare Risk Program [R] . Brown, R., Smith, K. D., Retchin, S., 1999

机译：医疗保险风险计划的最小负担风险调整员

Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research

摘要

著录项

相似文献

相关主题

期刊订阅