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意大利公众对共享基因信息和医疗信息的看法:“由你决定你的DNA”研究的结果

Italian public's views on sharing genetic information and medical information: findings from the 'Your DNA, Your Say' study.

作者信息

Romano Virginia, Milne Richard, Mascalzoni Deborah

机构信息

Center for Research, Ethics and Bioethics, Uppsala University, Uppsala, Sweden, SE-751 05, Sweden.

Medical Ethics, Lund University, Lund, Sweden, 22362, Sweden.

出版信息

Wellcome Open Res. 2021 Jul 12;6:180. doi: 10.12688/wellcomeopenres.16909.1. eCollection 2021.


DOI:10.12688/wellcomeopenres.16909.1
PMID:35233468
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8855014/
Abstract

: The collection and sharing of genomic and health data underpins global efforts to develop genomic medicine services. 'Your DNA, Your Say' is a cross-sectional survey with the goal of gathering lay public attitudes toward the access and sharing of deoxyribonucleic acid (DNA) information and medical information. It suggests significant international variation in the willingness to share information, and in trust in the actors associated with the collection and use of this information. This paper explores these questions in the Italian context. : The Italian Your DNA, Your Say campaign led to the collection of 1229 valid questionnaires. The sample was analysed using standard descriptive statistics. We described the sample in terms of gender, age ranges and self-reported religiosity, and split the sample amongst the five typically studied Italian macro-areas to explore regional variation. We analysed the relationship between these factors and trust and willingness to share medical and DNA information.  : The majority of the sample, across all socio-demographics, were willing to share DNA and health information with all entities considered except for-profit researchers. Respondents tended not to trust institutions beyond their own doctor. There was no difference between Italian regions. : Despite the generally positive attitude towards sharing, we suggest that the lack of trust in non-profit researchers and the government needs to be better understood to inform public communication projects around genomics in the future and to enhance awareness of DNA and medical information in Italy.

摘要

基因组和健康数据的收集与共享是全球发展基因组医学服务努力的基础。“你的DNA,你做主”是一项横断面调查,旨在收集普通公众对脱氧核糖核酸(DNA)信息和医疗信息的获取与共享的态度。调查表明,在信息共享意愿以及对与这些信息的收集和使用相关的行为者的信任方面,存在显著的国际差异。本文在意大利背景下探讨这些问题。

意大利的“你的DNA,你做主”活动共收集到1229份有效问卷。使用标准描述性统计方法对样本进行了分析。我们从性别、年龄范围和自我报告的宗教信仰等方面描述了样本,并将样本划分到五个典型的意大利大区域,以探讨区域差异。我们分析了这些因素与信任以及共享医疗和DNA信息意愿之间的关系。

在所有社会人口统计学特征方面,样本中的大多数人愿意与除营利性研究人员之外的所有被考虑的实体共享DNA和健康信息。受访者往往不信任自己医生以外的机构。意大利各地区之间没有差异。

尽管总体上对共享持积极态度,但我们认为,对非营利性研究人员和政府缺乏信任的问题需要得到更好的理解,以便为未来围绕基因组学的公众宣传项目提供参考,并提高意大利民众对DNA和医疗信息的认识。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/98d9/8855014/4fe12360df0b/wellcomeopenres-6-18654-g0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/98d9/8855014/0c4c5c0a744f/wellcomeopenres-6-18654-g0000.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/98d9/8855014/00e908848f5c/wellcomeopenres-6-18654-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/98d9/8855014/4fe12360df0b/wellcomeopenres-6-18654-g0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/98d9/8855014/0c4c5c0a744f/wellcomeopenres-6-18654-g0000.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/98d9/8855014/00e908848f5c/wellcomeopenres-6-18654-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/98d9/8855014/4fe12360df0b/wellcomeopenres-6-18654-g0002.jpg

相似文献

[1]
Italian public's views on sharing genetic information and medical information: findings from the 'Your DNA, Your Say' study.

Wellcome Open Res. 2021-7-12

[2]
'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods.

Per Med. 2018-7-1

[3]
Public trust and genomic medicine in Canada and the UK.

Wellcome Open Res. 2021-7-1

[4]
Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

Am J Hum Genet. 2020-9-17

[5]
Attitudes of Costa Rican individuals towards donation of personal genetic data for research.

Per Med. 2021-3

[6]
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

Genome Med. 2021-5-25

[7]
Older adults' willingness to share their personal and health information when adopting healthcare technology and services.

Int J Med Inform. 2019-3-14

[8]
Your DNA, Your Say.

New Bioeth. 2017-4

[9]
Sharing medical data for health research: the early personal health record experience.

J Med Internet Res. 2010-5-25

[10]
Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey.

J Med Internet Res. 2021-10-29

引用本文的文献

[1]
Public attitudes toward the use of human induced pluripotent stem cells: insights from an Italian adult population.

Front Public Health. 2024

[2]
Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI.

Asian Bioeth Rev. 2024-6-13

[3]
Health data sharing attitudes towards primary and secondary use of data: a systematic review.

EClinicalMedicine. 2024-3-18

[4]
Attitude towards consent-free research use of personal medical data in the general German population.

Heliyon. 2024-3-11

[5]
Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.

J Med Internet Res. 2023-4-13

本文引用的文献

[1]
Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

Am J Hum Genet. 2020-9-17

[2]
A Scenario-Based Methodology for Analyzing the Ethical, Legal, and Social Issues in Genomic Data Sharing.

J Empir Res Hum Res Ethics. 2020-10

[3]
Genomics: data sharing needs an international code of conduct.

Nature. 2020-2

[4]
Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.

J Med Ethics. 2022-1

[5]
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.

Hum Genet. 2019-9-17

[6]
A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.

Health Policy. 2019-3-21

[7]
Sharing individual participant data from clinical studies: a cross-sectional online survey among Italian patient and citizen groups.

BMJ Open. 2019-2-19

[8]
Integrating Genomics into Healthcare: A Global Responsibility.

Am J Hum Genet. 2019-1-3

[9]
Attitudes of publics who are unwilling to donate DNA data for research.

Eur J Med Genet. 2019-5

[10]
'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods.

Per Med. 2018-7-1

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