Dataset Information

Personal Genome Project UK (PGP-UK): a research and citizen science hybrid project in support of personalized medicine.

ABSTRACT: BACKGROUND:Molecular analyses such as whole-genome sequencing have become routine and are expected to be transformational for future healthcare and lifestyle decisions. Population-wide implementation of such analyses is, however, not without challenges, and multiple studies are ongoing to identify what these are and explore how they can be addressed. METHODS:Defined as a research project, the Personal Genome Project UK (PGP-UK) is part of the global PGP network and focuses on open data sharing and citizen science to advance and accelerate personalized genomics and medicine. RESULTS:Here we report our findings on using an open consent recruitment protocol, active participant involvement, open access release of personal genome, methylome and transcriptome data and associated analyses, including 47 new variants predicted to affect gene function and innovative reports based on the analysis of genetic and epigenetic variants. For this pilot study, we recruited 10 participants willing to actively engage as citizen scientists with the project. In addition, we introduce Genome Donation as a novel mechanism for openly sharing previously restricted data and discuss the first three donations received. Lastly, we present GenoME, a free, open-source educational app suitable for the lay public to allow exploration of personal genomes. CONCLUSIONS:Our findings demonstrate that citizen science-based approaches like PGP-UK have an important role to play in the public awareness, acceptance and implementation of genomics and personalized medicine.

SUBMITTER: PGP-UK Consortium

PROVIDER: S-EPMC6257975 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Publications

Personal Genome Project UK (PGP-UK): a research and citizen science hybrid project in support of personalized medicine.

BMC medical genomics 20181127 1

<h4>Background</h4>Molecular analyses such as whole-genome sequencing have become routine and are expected to be transformational for future healthcare and lifestyle decisions. Population-wide implementation of such analyses is, however, not without challenges, and multiple studies are ongoing to identify what these are and explore how they can be addressed.<h4>Methods</h4>Defined as a research project, the Personal Genome Project UK (PGP-UK) is part of the global PGP network and focuses on open ...[more]

PMID: 30482208

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Project description:BackgroundBiodiversity is being lost rapidly and its conservation is thus one of the most urgent tasks today. For biodiversity conservation to be successful, the public needs to gain an awareness and understanding of biodiversity and its importance. Moreover, species experts are needed who have the skills necessary for identifying and recording biodiversity. Previous research showed that citizen science projects can contribute to educating the public about biodiversity. However, it is still unclear how project characteristics connect to participants' knowledge and skills and how citizen science projects should be designed if they are to foster participants' learning.AimWe aimed to investigate specific characteristics of biodiversity citizen science projects that could potentially influence participants' learning. We explored the following project characteristics from both the project coordinators' and the participants' perspectives: information and training provided to participants, social interaction among participants, contact between participants and staff, and feedback and recognition provided to participants.Methods and resultsIn order to examine the extent to which these project characteristics are connected to participants' gains in knowledge and skills, we conducted a comprehensive study across 48 biodiversity citizen science projects in Europe and Australia. We found that participants' perceived gains in knowledge and skills were significantly related to the five project characteristics as reported by the participants: information received by the participants, training received by the participants, social interaction among participants, contact between participants and staff, and feedback and recognition received by the participants.ConclusionWe conclude that by deliberately designing citizen science projects to include features such as interaction and feedback, these projects could achieve higher learning outcomes for the participants. Thereby, suitable modes of communication between projects and their participants are crucial. We provide specific suggestions for the design of biodiversity citizen science projects and for future research on project characteristics and participant outcomes.

Dataset Information

Personal Genome Project UK (PGP-UK): a research and citizen science hybrid project in support of personalized medicine.

Publications

Personal Genome Project UK (PGP-UK): a research and citizen science hybrid project in support of personalized medicine.

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