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genomic research and wide data sharingviews of

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Genomic research and wide data sharing: views of ...PURPOSE: Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research.Cited by: 188Publish Year: 2010Author: Susan Brown Trinidad, Stephanie M Fullerton, Julie M Bares, Gail P Jarvik, Eric B Larson, Wylie Burk...

Wylie Burke, MD, PhD | Division of Medical Genetics genomic research and wide data sharingviews of

Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Genomic research and wide data sharing: views of prospective participants. Genet Med, in press. Printer-friendly; Contact. Email: [email protected] Phone: (206) 221-5482. Find Faculty. Fast find: Click the drop down and type a What is genomic research?In genomic research for cancer and rare diseases, patient family members (e.g., parents, children, siblings, or uncles/aunts) can provide important information [ 9, 10, 11 ]. In some studies, genomic data from patients and family members are routinely submitted to a repository or database, and shared broadly.See all results for this questionWhat is a genomic dataset?First, when results from familial or trio genomic analysis are submitted, those data are usually shared with clinical data for patients and family members to enable analysis of genomic data and phenotypes. A dataset is usually associated with the published article showing these data, or its accession number is shown.See all results for this question

What are the risks of data sharing?

In our study, few clinical trial participants had strong concerns about the risks of data sharing. Provided that adequate security safeguards were in place, most participants were willing to share their data for a wide range of uses. (Funded by the Greenwall Foundation.)See all results for this questionUser-focused data sharing agreements: a foundation for the genomic research and wide data sharingviews ofBroad sharing: When individuals agree to share their genetic data, a majority want their data made available for as many studies as possible. 24 Many who have donated tissue samples for genetic research express a desire to benefit the common good, though they may inaccurately distinguish between diagnostic testing and research. 25, 26 However, providing individuals with greater detail Cited by: 2Publish Year: 2019Author: Carolyn PetersenUniversity of Dundee Motivations for data sharing-views International research consortia in the field of biomedicine collect large amounts of information consisting of different data types from participants that are often located in different countries. A key tenet that facilitates ongoing and future research is data sharing. Data sharing is viewed as good practice for advancing biomedical research, as

Susan Brown Trinidad, MA | UW Department of Bioethics genomic research and wide data sharingviews of

Sue Trinidad is a Research Scientist in the Department of Bioethics and Humanities. She has been with the department since 2005. Her expertise includes the design and conduct of qualitative research and community-based participatory research as well as health communication.Susan Brown Trinidad - Google ScholarGenomic research and wide data sharing: views of prospective participants. SB Trinidad, SM Fullerton, JM Bares, GP Jarvik, EB Larson, W Burke. Genetics in Medicine 12 (8), 486-495, 2010. 182: 2010: Silent loss and the clinical encounter: parents and physicians Stephanie Malia Fullerton - Google ScholarGenomic research and wide data sharing: views of prospective participants. SB Trinidad, SM Fullerton, JM Bares, GP Jarvik, EB Larson, W Burke. Genetics in Medicine 12 (8), 486-495, 2010. 183: 2010: Eclipse of the gene and the return of divination.

Stakeholders perspectives on biobank-based genomic genomic research and wide data sharingviews of

Mar 04, 2015 · Genomic research carries the risk of reidentification of research participants and thereby may also constitute a threat to their privacy. 5, 13, 15, 20 In addition, genomic data may include risk genomic research and wide data sharingviews ofCited by: 28Publish Year: 2015Author: Alma Husedzinovic, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Stefan Fröhling, Eva C Win genomic research and wide data sharingviews ofSociety and personal genome data | Human Molecular genomic research and wide data sharingviews ofMar 07, 2018 · Terminology is used very broadly in this review, e.g. genomic could equally refer to either germline or somatic genomic data. Genetic and genomic both refer to the ability to search through DNA to understand and catalogue variation, when only one gene is explored genetic is used, when many genes are explored then genomics is used.Cited by: 13Publish Year: 2018Author: Anna MiddletonPublic Acceptability of Data Sharing Between the Public genomic research and wide data sharingviews ofOct 04, 2013 · Report of a deliberative research project on the public's attitudes towards data sharing. It focuses particularly on a) the public's opinion about data sharing with the private and third sector; b) the acceptability of different methods for sharing benefits gained from the use of their data; and c) the appeal of different methods for empowering citizens in decision making about the use of genomic research and wide data sharingviews ofSome results are removed in response to a notice of local law requirement. For more information, please see here.

Privacy-preserving techniques of genomic dataa survey genomic research and wide data sharingviews of

Introduction. Seminal advancement in genomic data generation over the past decade has impacted health science and related scientific studies. The genesis in data accumulation has made the scientific studies on multiple genre of medical genomics more realistic [].Throughout the world, large and varied genomic data sets now help researchers understand the relation between our genomic codes and genomic research and wide data sharingviews ofOpen sharing of genomic data: Who does it and why?May 09, 2017 · Genomic research promises major advances in our understanding of health and disease. In parallel, sharing genomic data offers encouraging prospects to accelerate research by generating information-rich genome datasets.Cited by: 29Publish Year: 2017Author: Tobias Haeusermann, Tobias Haeusermann, Bastian Greshake, Alessandro Blasimme, Darja Irdam, Martin R genomic research and wide data sharingviews ofOpen Access Data Sharing in Genomic ResearchThe current emphasis on broad sharing of human genomic data generated in research in order to maximize utility and public benefit is a significant legacy of the Human Genome Project. Concerns about privacy and discrimination have led to policy responses that restrict access to genomic data as the means for protecting research participants. Our research and experience show, however, that a genomic research and wide data sharingviews ofCited by: 17Publish Year: 2014Author: Stacey Pereira, Richard A. Gibbs, Amy L. McGuire

Is genomic data sharing ethical?

In some studies, genomic data from patients and family members are routinely submitted to a repository or database, and shared broadly. While the advantage of genomic data sharing is recognized, privacy protection, security, and respecting participants consent remain as ethical concerns [ 2, 12, 13 ].See all results for this questionGlad you asked: participants' opinions of re-consent for genomic research and wide data sharingviews ofGenomic research and wide data sharing: views of prospective participants. Trinidad, Susan Brown; Fullerton, Stephanie M; Bares, Julie M; Jarvik, Gail P; Larson, Eric B; Burke, Wylie ( 2010-08 ) Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants.Genomics and data science: an application within an genomic research and wide data sharingviews ofMay 29, 2019 · Data science allows the extraction of practical insights from large-scale data. Here, we contextualize it as an umbrella term, encompassing several disparate subdomains. We focus on how genomics fits as a specific application subdomain, in terms of well-known 3 V data and 4 M process frameworks (volume-velocity-variety and measurement-mining-modeling-manipulation, respectively).Cited by: 9Publish Year: 2019Author: Fábio C. P. Navarro, Hussein Mohsen, Chengfei Yan, Shantao Li, Mengting Gu, William Meyerson, Mark G genomic research and wide data sharingviews of

Genomic research and wide data sharing: views of genomic research and wide data sharingviews of

Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research.Genomic research and wide data sharing: views of genomic research and wide data sharingviews ofPURPOSE: Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research.Cited by: 188Publish Year: 2010Author: Susan Brown Trinidad, Stephanie M Fullerton, Julie M Bares, Gail P Jarvik, Eric B Larson, Wylie Burk genomic research and wide data sharingviews ofGenomic research and wide data sharing: views of genomic research and wide data sharingviews ofAug 01, 2010 · Abstract. Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research.Focus Cited by: 188Publish Year: 2010Author: Susan Brown Trinidad, Stephanie M Fullerton, Julie M Bares, Gail P Jarvik, Eric B Larson, Wylie Burk genomic research and wide data sharingviews of

Genomic research and wide data sharing: Views of genomic research and wide data sharingviews of

the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data reposito-ries. Most believed that making de-identied study data available to the research community is a social good that should be pursued. Privacy and condentiality concerns were common, although they would notGenomic Research and Wide Data Sharing: Views of genomic research and wide data sharingviews ofParticipants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data genomic research and wide data sharingviews ofGenomic Research and Wide Data Sharing: Views of genomic research and wide data sharingviews ofNumerous prior studies have characterized potential participants views about willingness to participate in biobanks and related forms of population-based genomic research and how informed consent ought to be handled. 17 33 There are also some published reports regarding participants views about research access to medical record data. 34 39 However, relatively little is known about participants

Evolving approaches to the ethical management of genomic

Jun 01, 2013 · As targeted genetic research began to give way to research with a more genomic focus, the expectations regarding broad data sharing, and rules to enforce them, were gradually extended to apply not only to the data produced in large, community resource projects, but also to Cited by: 55Publish Year: 2013Author: Jean E. McEwen, Joy T. Boyer, Kathie Y. SunEthical concerns on sharing genomic data including genomic research and wide data sharingviews ofJun 18, 2018 · The idea that data sharing promotes scientific progress has been widely accepted among research communities, funding bodies, and regulatory agencies [ 1, 2, 3, 4, 5 ]. Sharing clinical and genomic data promises to increase research efficiency, expedite translational efforts of research results, and ensure the traceability and transparency of published studies, while maximizing the utility of Cited by: 13Publish Year: 2018Author: Kyoko Takashima, Yuichi Maru, Seiichi Mori, Hiroyuki Mano, Tetsuo Noda, Kaori MutoElectronic Medical Records and Genomics (eMERGE) NetworkFeb 23, 2020 · The Network brings together researchers with a wide range of expertise in genomics, statistics, ethics, informatics, and clinical medicine from leading medical research institutions across the country to conduct research in genomics, including discovery, clinical implementation and public resources (see goals). eMERGE was announced in September genomic research and wide data sharingviews of

Diversity and inclusion in genomic research: why the genomic research and wide data sharingviews of

Jul 18, 2017 · Abstract. Conducting genomic research in diverse populations has led to numerous advances in our understanding of human history, biology, and health disparities, in addition to discoveries of vital clinical significance. Conducting genomic research in diverse populations is also important in ensuring that the genomic revolution does not exacerbate health disparities by facilitating discoveries De-identified genomic data sharing: the research genomic research and wide data sharingviews ofApr 05, 2017 · Views of research participants on the use of de-identified data in large research datasets are important for future projects, such as the Precision Medicine Initiative and Cancer Moonshot Initiative. This quantitative study set in the USA examines participant preferences and evaluates differences by demographics and cancer history.Cited by: 18Publish Year: 2017Author: Deborah Goodman, Catherine O. Johnson, Deborah Bowen, Megan Smith, Lari Wenzel, Karen EdwardsClinical Trial Participants Views of the Risks and genomic research and wide data sharingviews ofPrevious research on genomic data, however, has shown the reverse. 59,62. genomic research and wide data sharingviews of Genomic research and wide data sharing: views of prospective participants. Genet Med 2010;12: 486-495.Cited by: 107Publish Year: 2018Author: Michelle M Mello, Van Lieou, Steven N Goodman

1038srep06055 Skloot R 2011 The immortal life of Henrietta genomic research and wide data sharingviews of

1038/srep06055 Skloot R (2011) The immortal life of Henrietta Lacks, 1st edn. Broadway Paperbacks, New York Sladek R et al (2007) A genome-wide association study identifies novel risk loci for type 2 diabetes. Nature 445:881 885. doi: 10.1038/ nature05616 Tarver-Carr ME, Powe NR, Eberhardt MS, LaVeist TA, Kington RS, Coresh J, Brancati FL (2002) Excess risk of chronic kidney disease among genomic research and wide data sharingviews of(PDF) Society and personal genome data - ResearchGatePDF | Genomic data offers a goldmine of information for understanding the contribution genetic variation makes to health and disease. The potential of genomic research and wide data sharingviews of | Find, read and cite all the research you genomic research and wide data sharingviews of

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