It depends whose data are being shared: considerations for genomic data sharing policies
نویسندگان
چکیده
منابع مشابه
It depends whose data are being shared: considerations for genomic data sharing policies
There is an urgent need for consistent data sharing policies that promote the advancement of science while respecting the values and interests of those providing their genetic data for research. Responding to the article of Jalayne J. Arias, Genevieve Pham-Kanter, and Eric G. Campbell, 'The Growth and Gaps of Genetic Data Sharing Policies in the United States', this commentary further explores ...
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BACKGROUND Sharing of raw research data is common in many areas of medical research, genomics being perhaps the most well-known example. In the clinical trial community investigators routinely refuse to share raw data from a randomized trial without giving a reason. DISCUSSION Data sharing benefits numerous research-related activities: reproducing analyses; testing secondary hypotheses; devel...
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We explored the characteristics and motivations of people who, having obtained their genetic or genomic data from Direct-To-Consumer genetic testing (DTC-GT) companies, voluntarily decide to share them on the publicly accessible web platform openSNP. The study is the first attempt to describe open data sharing activities undertaken by individuals without institutional oversight. In the paper we...
متن کاملWhy data-sharing policies matter.
D ata from biomedical research are more broadly available to the research community today than in the past. Technical developments, such as web-based databases, have played a role in this transition, but so has a fundamental shift in the view of who ‘‘owns’’ research data. The model of the investigator owning data has been increasingly replaced by one in which society owns data. Scientific and ...
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Introduction Effective data sharing does not occur in the UK despite being essential for the delivery of high-quality genomic services to patients across clinical specialities and to optimize advances in genomic medicine. Sources of data Original papers, reviews, guidelines, policy papers and web-resources. Areas of agreement Data sharing for genomic medicine requires appropriate infrastruc...
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ژورنال
عنوان ژورنال: Journal of Law and the Biosciences
سال: 2015
ISSN: 2053-9711
DOI: 10.1093/jlb/lsv030