Open Access Data Sharing in Genomic Research
The 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 me...
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doaj-29f5770188a34be1924f75226d9f460e2020-11-24T22:54:30ZengMDPI AGGenes2073-44252014-08-015373974710.3390/genes5030739genes5030739Open Access Data Sharing in Genomic ResearchStacey Pereira0Richard A. Gibbs1Amy L. McGuire2Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USAHuman Genome Sequencing Center, Baylor College of Medicine, Houston, TX 77030, USACenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USAThe 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 considerable number of research participants agree to open access sharing of their genomic data when given the choice. General policies that limit access to all genomic data fail to respect the autonomy of these participants and, at the same time, unnecessarily limit the utility of the data. We advocate instead a more balanced approach that allows for individual choice and encourages informed decision making, while protecting against the misuse of genomic data through enhanced legislation.http://www.mdpi.com/2073-4425/5/3/739data sharinggenomicsprivacygenetic discriminationopen access database |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Stacey Pereira Richard A. Gibbs Amy L. McGuire |
spellingShingle |
Stacey Pereira Richard A. Gibbs Amy L. McGuire Open Access Data Sharing in Genomic Research Genes data sharing genomics privacy genetic discrimination open access database |
author_facet |
Stacey Pereira Richard A. Gibbs Amy L. McGuire |
author_sort |
Stacey Pereira |
title |
Open Access Data Sharing in Genomic Research |
title_short |
Open Access Data Sharing in Genomic Research |
title_full |
Open Access Data Sharing in Genomic Research |
title_fullStr |
Open Access Data Sharing in Genomic Research |
title_full_unstemmed |
Open Access Data Sharing in Genomic Research |
title_sort |
open access data sharing in genomic research |
publisher |
MDPI AG |
series |
Genes |
issn |
2073-4425 |
publishDate |
2014-08-01 |
description |
The 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 considerable number of research participants agree to open access sharing of their genomic data when given the choice. General policies that limit access to all genomic data fail to respect the autonomy of these participants and, at the same time, unnecessarily limit the utility of the data. We advocate instead a more balanced approach that allows for individual choice and encourages informed decision making, while protecting against the misuse of genomic data through enhanced legislation. |
topic |
data sharing genomics privacy genetic discrimination open access database |
url |
http://www.mdpi.com/2073-4425/5/3/739 |
work_keys_str_mv |
AT staceypereira openaccessdatasharingingenomicresearch AT richardagibbs openaccessdatasharingingenomicresearch AT amylmcguire openaccessdatasharingingenomicresearch |
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1725659455754862592 |