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People may wish to control how genomic data about them are used but, in many cases, they only have the choice to opt in (or opt out) based on the terms contained in a consent form or a service agreement 9, which frequently goes unread 10, 11. The concept of privacy and its protection has many facets 8. However, the law provides limited, patchy protection 6, 7.
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These apprehensions do have some foundation as people can suffer harm if data about them are used in ways they do not agree with, for example, to examine ancestry 1 or to create commercial products 2 without the individual’s approval, or if the data are used in a manner that causes an individual to suffer adverse consequences such as stigmatization 3, disruption of familial relationships 4, 5 or loss of employment or insurance. At the same time, numerous reports from around the world illustrate that some people are concerned about how genomic information that relates to them are used, often stated as challenges to privacy. There are many stories in the media highlighting the multitude of ways by which genomic data are now relied upon, including in basic research, clinical care, discovering relatives and ancestral origins, tracking down criminals, and identification of victims.