Fort Lauderdale Agreement

09 Apr Fort Lauderdale Agreement

Advances in sequencing and computer technologies have also enabled the scientific community to make a new scientific effort, particularly large-scale data production projects. These projects generate data and create administrative infrastructure or platforms that can support multiple researchers` simultaneous access to a dataset. Secondary users of the data are far removed from the researchers who took the samples and data, as well as the researchers. In the context of such projects, researchers are informed that the analysis of their order will be available free of charge on the Internet. These projects have enormous benefits for the entire scientific community, as they have accelerated the creation of new knowledge and provided a data exchange plan (BOX 2). The need to reconsider these guidelines is underlined by the simultaneous publication of two distinct sets of the cow genome: Btau 4.0, as described by the Genome Sequencing and Analysis Consortium (BGSAC) [3], and UMD 2.0, as described by Zimin et al. [4]. Both sets of genomes are based on traces of sequences produced by Baylor College of Medicine as part of the BGSAC. While the publication of Zimin et al. is not contrary to the Fort Lauderdale agreement, since both genomes are published simultaneously, the availability of two genomic groups made from the same dataset raises a number of issues that need to be addressed by promotion agencies, sequence producers and the user community. How many subsets are needed and useful? Who has the right to assemble the genome? How should the reference community choose? Are genomic centres still responsible for assembly updates? The digital revolution, which has allowed many types of data to be shared with or without consent, is rapidly changing the data protection landscape. Disclosure control procedures, such as encoding each subject.B or aggregating information, can be used to protect the identity of the individuals involved. However, these guidelines may reduce the scientific usefulness of the data, as efforts to protect privacy can result in a loss of detail and subtle nuances.14 Dna is a unique identifier, it is impossible to completely anonymize a sample and a relatively small number of SNPs can be used to identify individuals15 , removing SNP data from publicly available databases, it is impossible to completely anonymize a sample and a relatively small number of SNPs can be used to identify individuals15 , removing SNP data from publicly available databases.

, which follow Homer`s and others16 document that illustrate participants` privacy issues by applying the GWAS methodology. Homer and his colleagues found, through statistical analysis, that a person could be identified in aggregated data, because genomic scans provide such a wide range of unique data points. There are other mechanisms that allow researchers to obtain appropriate accreditation for early release of data. Two of these avenues, strongly encouraged by iBOL members, are: Project Description and Data Release Publications. These objectives are multiple: a) provide information for the accreditation of data collectors, so that these researchers can be cited, b) to the iBOL team and to the largest population of research and advertising The ability to provide inputs and new data that can be used to refine and improve interim data; (c) provide opportunities for information exchange that could lead to new partnerships and funding. , and (d) the establishment of a forum for a “statement of intent” to allow researchers to outline their intended use of the data under the terms of the Fort Lauderdale Agreement, to prevent other researchers from being “drained” of the data for the same purpose.

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