Consent Insufficient For Data Release Response

SCIENCE(2019)

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摘要
Nicol et al. make insightful comments on issues related to data sharing and ethics, regulations, and imbalance of power. We largely share their concerns, and we did indeed mention some of them briefly in our Policy Forum. Our discussion pertained to all types of data, many or most of which do not include any personal information or do not involve individuals or humans in any way. For example, environmental genomics data generated through public funding should become available shortly after generation and should enjoy unrestricted usage. As we acknowledged in the Policy Forum, when it comes to personal data, issues of privacy, confidentiality, and informed consent need to be considered carefully and the best arrangements may vary on a case-by-case basis. It makes sense to anticipate these issues before data collection begins and to aim for research designs and informed consent forms that allow maximal, prompt, open use of valuable data.We agree with Nicol et al. that public release of data may affect distribution of burdens and benefits across and within populations, and this is something that should be closely monitored. However, we think that usually more openness would diminish the inadvertent concentration of informational power in the hands of select for-profit enterprises that may wish to hoard data for their own advantage. Conversely, the public release of data may offer more value for the public and more widely distributed benefits of science.The list of author affiliations is available at [www.sciencemag.org/content/363/6425/350/suppl/DC1][1]. [1]: http://www.sciencemag.org/content/363/6425/350/suppl/DC1
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关键词
Data sharing,Personally identifiable information,Informed consent,Confidentiality,Data collection,Internet privacy,Openness to experience,Business,Data type,Data release
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