DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals
DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals
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DOI：
10.3389/fgene.2019.01107
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发表时间：
2019-11-05
影响因子：
3.7
通讯作者：
Shabani, Mahsa
中科院分区：
文献类型：
--
作者：
Ahmed, Eman;Shabani, Mahsa
个人基因组数据和相关健康数据对于公共资助的研究和新药、疗法和诊断测试开发的营利性实体来说都是宝贵的资源。为了获取大型数据集，制药和生物技术公司与公共和私人实体（例如直接面向消费者的基因检测公司）建立了合作伙伴关系，以购买从研究参与者和客户收集的基因组和健康相关数据库。尽管个人主要支持出于研究目的的数据共享，但此类数据共享的营利性质引发了一些有关数据主体的权利和分享利益的公平性的问题。为此，Nebula Genomics、LunaDNA 和 EncrypGen 等新一代测序和数据共享初创公司不断涌现，旨在将数据控制权交给每个客户。特别是，这种所谓的“DNA数据市场”允许个人获得各种类型的金钱激励来对其基因组进行测序并与感兴趣的商业方分享。本文旨在对与建立此类基因组和健康数据共享市场相关的伦理挑战进行探索性和批判性的审查。鉴于越来越多的初创公司开发此类市场，对相关道德问题进行彻底分析是及时且必要的。
Personal genomic data and the related health data are valuable resources for both public-funded research, and for-profit entities in development of new drugs, therapies, and diagnostic tests. In order to access to large datasets, pharmaceutical and biotech companies have developed partnerships with public and private entities such as direct-to-consumer genetic testing companies to buy genomic and health related databases collected from research participants and customers. Although individuals mainly support data sharing for research purposes, the for-profit nature of such data sharing raises some questions regarding the rights of the data subjects and fairness in sharing benefits. In response, a new generation of sequencing and data sharing startups such as Nebula Genomics, LunaDNA, and EncrypGen are emerging which aim for leaving the data control in the hands of each individual customer. In particular, such so-called "DNA data marketplaces" allow individuals to receive various types of monetary incentives to sequence their genome and share it with interested commercial parties. This paper aims to provide an exploratory and critical review of the ethical challenges related to establishing such marketplaces for genomic and health data sharing. In the view of the growing number of startups developing such marketplaces, a thorough analysis of the relevant ethical concerns is timely and needed.