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Opportunities and Challenges in Interpreting and Sharing Personal Genomes

The 2019 “Personal Genomes: Accessing, Sharing and Interpretation” conference (Hinxton, UK, 11–12 April 2019) brought together geneticists, bioinformaticians, clinicians and ethicists to promote openness and ethical sharing of personal genome data while protecting the privacy of individuals. The tal...

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Detalles Bibliográficos
Autores principales: Rubin, Irit R., Glusman, Gustavo
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6770764/
https://www.ncbi.nlm.nih.gov/pubmed/31450660
http://dx.doi.org/10.3390/genes10090643
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author Rubin, Irit R.
Glusman, Gustavo
author_facet Rubin, Irit R.
Glusman, Gustavo
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description The 2019 “Personal Genomes: Accessing, Sharing and Interpretation” conference (Hinxton, UK, 11–12 April 2019) brought together geneticists, bioinformaticians, clinicians and ethicists to promote openness and ethical sharing of personal genome data while protecting the privacy of individuals. The talks at the conference focused on two main topic areas: (1) Technologies and Applications, with emphasis on personal genomics in the context of healthcare. The issues discussed ranged from new technologies impacting and enabling the field, to the interpretation of personal genomes and their integration with other data types. There was particular emphasis and wide discussion on the use of polygenic risk scores to inform precision medicine. (2) Ethical, Legal, and Social Implications, with emphasis on genetic privacy: How to maintain it, how much privacy is possible, and how much privacy do people want? Talks covered the full range of genomic data visibility, from open access to tight control, and diverse aspects of balancing benefits and risks, data ownership, working with individuals and with populations, and promoting citizen science. Both topic areas were illustrated and informed by reports from a wide variety of ongoing projects, which highlighted the need to diversify global databases by increasing representation of understudied populations.
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spelling pubmed-67707642019-10-30 Opportunities and Challenges in Interpreting and Sharing Personal Genomes Rubin, Irit R. Glusman, Gustavo Genes (Basel) Conference Report The 2019 “Personal Genomes: Accessing, Sharing and Interpretation” conference (Hinxton, UK, 11–12 April 2019) brought together geneticists, bioinformaticians, clinicians and ethicists to promote openness and ethical sharing of personal genome data while protecting the privacy of individuals. The talks at the conference focused on two main topic areas: (1) Technologies and Applications, with emphasis on personal genomics in the context of healthcare. The issues discussed ranged from new technologies impacting and enabling the field, to the interpretation of personal genomes and their integration with other data types. There was particular emphasis and wide discussion on the use of polygenic risk scores to inform precision medicine. (2) Ethical, Legal, and Social Implications, with emphasis on genetic privacy: How to maintain it, how much privacy is possible, and how much privacy do people want? Talks covered the full range of genomic data visibility, from open access to tight control, and diverse aspects of balancing benefits and risks, data ownership, working with individuals and with populations, and promoting citizen science. Both topic areas were illustrated and informed by reports from a wide variety of ongoing projects, which highlighted the need to diversify global databases by increasing representation of understudied populations. MDPI 2019-08-25 /pmc/articles/PMC6770764/ /pubmed/31450660 http://dx.doi.org/10.3390/genes10090643 Text en © 2019 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Conference Report
Rubin, Irit R.
Glusman, Gustavo
Opportunities and Challenges in Interpreting and Sharing Personal Genomes
title Opportunities and Challenges in Interpreting and Sharing Personal Genomes
title_full Opportunities and Challenges in Interpreting and Sharing Personal Genomes
title_fullStr Opportunities and Challenges in Interpreting and Sharing Personal Genomes
title_full_unstemmed Opportunities and Challenges in Interpreting and Sharing Personal Genomes
title_short Opportunities and Challenges in Interpreting and Sharing Personal Genomes
title_sort opportunities and challenges in interpreting and sharing personal genomes
topic Conference Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6770764/
https://www.ncbi.nlm.nih.gov/pubmed/31450660
http://dx.doi.org/10.3390/genes10090643
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