Social Networking and Personal Genomics: Emerging Issues for Health Research

社交网络和个人基因组学：健康研究的新问题

基本信息

批准号：
8252200
负责人：
Sandra Soo-Jin Lee
金额：
$ 31.71万
依托单位：
STANFORD UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2010
资助国家：
美国
起止时间：
2010-05-28 至 2013-09-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8252200
关键词：
Acquaintances Address Advocacy Attitude Bioethics Biomedical Research Blood Circulation Caring Case Study Collaborations Collection Communication Communities Consumer Participation DNA Data Databases Development Devices Disease Disease susceptibility Electronics Empirical Research Enrollment Ethics Ethnography Family member Foundations Friends Genetic Genetic Code Genetic screening method Genome Genomics Goals Health Health Personnel Health Professional Hereditary Disease Human Individual Industry Internet Knowledge Lead Life Cycle Stages Life Style Maps Marketing Medical Methodology Modeling Motivation Online Systems Participant Pathway Analysis Patient advocacy Pattern Personal Genetic Information Persons Police Policies Qualitative Methods Relative Risks Research Research Infrastructure Research Personnel Sampling Services Signal Transduction Social Network Technology Test Result Virtual Tool advocacy organizations base cohort empowered ethnographic method expectation forging insight member population based public health relevance scale up social social implication sound tool trait

项目摘要

DESCRIPTION (provided by applicant): The convergence of rapid development of increasingly efficient high throughput genetic sequencing technologies and ubiquitous internet use by the public has laid the foundation for the emergence of direct-to-consumer (DTC) personal genomic companies. This growing market niche is premised on predictions of several paradigm shifts in how the public views personal genetic information. The first is a claim that knowledge of a person's genetic code is empowering and will enable individuals to make better decisions about lifestyle, health and medical care. The second is that a new era of "openness" challenges traditional approaches to genetic testing, requiring different ethical approaches towards public protection. And, the third is that in a context where large population based DNA collections are needed to fuel genomic research, industry will take a lead in "scaling-up" in collecting the genotypic and phenotypic information for large cohort genetic studies. As the validity of these assertions has yet to be fully explored and evaluated, the proposed study takes an empirical bioethics approach to provide insight into each of these claims. This study pursues this goal by addressing the current gap in empirical research of the perspectives and practices of two key stakeholders: consumers and industry leaders. Using qualitative methods, the proposed study will focus on the products and services offered by DTC personal genome company, 23andMe, Inc., to discover the social networks created through the sharing of personal genomic information, the perspectives of individuals within these networks on the meaning of personal genomic information, and the potential impact of social networks on the landscape of large scale genomic research of human traits and disease, in particular, the potential blurring of the boundary between consumer and research participant. To achieve these goals, this study will engage in network ethnography (Howard 2002) in pursuing a case study of a leading DTC personal genomic company and its customers. Using a combination of social network analysis and ethnographic methodologies, study will trace how and with whom individuals share their personal genomic information, to examine attitudes and perspectives among DTC consumers on sharing personal genomic information, and investigate how companies create online tools and forge strategic collaborations to facilitate sharing and networking around PGI. The specific aims of this research are to: 1. Trace the life course of personal genomic information and map the social networks created through the sharing of direct-to-consumer genetic testing results. 2. Identify the motivations for sharing personal genomic information and the expectations, interpretation and application of personal genomic information among primary and secondary members of social networks, including family members, friends, health professionals and acquaintances, patient advocacy organization, and biomedical researchers. 3. Describe in ethnographic detail the development of online sharing infrastructure and 23andWe, a web-based tool to facilitate large scale genomic research among direct-to-consumer genomic customers. 4. Identify the technical, social and ethical implications of online sharing of personal genomic information and the participation of direct-to-consumer genomic consumers in direct-to-consumer company sponsored biomedical research. This research will provide a better understanding of the circulation of personal genomic information and consumer attitudes towards participating in online research communities and company sponsored research. By focusing on the development of online sharing tools as they emerge in the DTC personal genomic marketplace, this project may help to anticipate the ethical and social issues critical for sound regulatory guidance and police. PUBLIC HEALTH RELEVANCE: A serious challenge to efforts to fully understand the ethical and social implications of DTC personal genomics is a critical gap in empirical research on the perspectives and practices of two important stakeholder groups: the companies who provide genetic ancestry products and the individuals who consume them. This study examines how consumers share DTC personal genomic information online and create new research communities and their potential impact on large scale population based genomic research.

描述（由申请人提供）：公众日益高效的高吞吐量遗传测序技术和无处不在的互联网使用的快速发展的融合为直接到消费者（DTC）个人基因组公司的出现奠定了基础。这个不断增长的市场利基市场以预测公众对个人遗传信息的几种范式转变的预测为前提。首先是声称对一个人的遗传代码的知识正在赋予能力，并使个人能够对生活方式，健康和医疗保健做出更好的决定。第二个是“开放”的新时代挑战了传统的基因检测方法，需要采取不同的道德方法来公共保护。而且，第三个是，在需要大量基于人群的DNA收集以促进基因组研究的情况下，行业将领导“扩大规模”，以收集基因型和表型信息以进行大型队列遗传研究。由于这些断言的有效性尚未得到充分探索和评估，因此拟议的研究采用了经验的生物伦理学方法，以洞悉这些主张中的每一个。这项研究通过解决有关两个主要利益相关者的观点和实践的实证研究中的当前差距来追求这一目标：消费者和行业领导者。使用定性方法，拟议的研究将重点关注DTC个人基因组公司23andMe，Inc。提供的产品和服务，以发现通过共享个人基因组信息的共享，这些网络中个人的观点，个人基因组信息的含义以及社交网络对大型基因组的潜在影响和范围的潜在影响，这些网络的潜在影响以及人类的潜在影响以及人类的潜在影响以及人类的潜在影响以及人类的潜在影响以及人类的潜在影响以及人类的潜在影响，以及研究参与者。为了实现这些目标，这项研究将参与网络民族志（Howard 2002），以对领先的DTC个人基因组公司及其客户进行案例研究。研究将结合社交网络分析和民族志方法，研究将追踪个人如何以及与谁共享其个人基因组信息，研究DTC消费者在共享个人基因组信息方面的态度和观点，并研究公司如何创建在线工具和建立战略合作以促进PGI围绕PGI的共享和网络。这项研究的具体目的是：1。追踪个人基因组信息的生活过程，并绘制通过共享直接到消费者基因测试结果创建的社交网络。 2。确定共享个人基因组信息的动机以及社交网络的主要和中学成员之间个人基因组信息的期望，解释和应用，包括家人，朋友，卫生专业人员和熟人，患者倡导组织以及生物医学研究人员。 3.在人种学细节中描述在线共享基础架构和23andwe的开发，这是一种基于网络的工具，可促进直接到消费者基因组客户之间的大规模基因组研究。 4.确定个人基因组信息的在线共享的技术，社会和道德含义，以及直接面向消费者的基因组消费者参与直接消费者的公司赞助的生物医学研究。这项研究将更好地理解个人基因组信息的流通，以及消费者对参与在线研究社区和公司赞助研究的态度。通过专注于在线共享工具在DTC个人基因组市场中出现时的开发，该项目可能有助于预测对合理监管指导和警察至关重要的道德和社会问题。公共卫生相关性：对充分理解DTC个人基因组学道德和社会影响的努力的严重挑战是关于两个重要利益相关者群体的观点和实践的经验研究的关键差距：提供遗传血统产品及其消费的个人的公司。这项研究研究了消费者如何在线共享DTC个人基因组信息，并创建新的研究社区及其对基于大规模人群的基因组研究的潜在影响。