It’s worth noting that the Personal Genome Project was created ~2008 in part to test this question empirically: participates upload their genomes to the PGP website where it is 100% public, and they are periodically surveyed and asked if they have experienced any harms from their genome being available. As far as I know, the several hundred/thousand participants have yet to report any substantial harms happening.
The PGP doesn’t “intentionally associate” a name with a genome. From the terms and conditions of PGP here.
9.1 No Confidentiality After Publication. If you are enrolled in the PGP and choose to publish any of your data to the PGP’s public website and database, that data will not be kept or made available by the PGP in a confidential or anonymous fashion. The PGP will not require any collaborators or other individuals accessing your information to keep the information in a confidential or anonymous fashion. Unless you withdraw from the study before your data are published, your genetic and trait data will be made available via a publicly accessible website and database. 9.2 Association of Your Name With Your Data. The PGP will not intentionally associate your name with your genomic or trait data or other information that is published to the PGP’s public website and database or otherwise intentionally identify you as a participant in the PGP without your prior consent. However, as described above, because of the identifiable nature of the information you provide to the PGP, as well as the nature of the data and analyses generated by the PGP, it is possible that one or more third parties may identify you as a participant in the study. This may result in the association of your published data and other information with your name or other information that you have not provided to the PGP and may not have wished to be publicly disclosed. 9.3 Efforts to Preserve Confidentiality Prior to Publication. Before your publication of specimen analysis data, the PGP will use reasonable efforts to preserve the privacy and confidentiality of such data, as well as other information you provide to the PGP in a private Protocol #: 15461 Harvard University Faculty of Medicine IRB PGP Consent Form Page 20 of 24 Revision 2015.05.05 manner (your name, answers to safety questionnaires and communication with project staff). You should be aware that the public disclosure of this information may still happen due to unintended data breaches, including hacking or other activities outside of the procedures described in this consent form. For this reason the PGP cannot guarantee that information you provide to the study, or that is generated about you by the study, will be maintained in a confidential manner.
Risks come with your genome being identifiable as you.
It’s worth noting that the Personal Genome Project was created ~2008 in part to test this question empirically: participates upload their genomes to the PGP website where it is 100% public, and they are periodically surveyed and asked if they have experienced any harms from their genome being available. As far as I know, the several hundred/thousand participants have yet to report any substantial harms happening.
I do expect most of the harms to live in the moderate future though. It’s not that surprising that we haven’t, like, invented Gattaca world yet.
Have any less substantial harms been reported?
The PGP doesn’t “intentionally associate” a name with a genome. From the terms and conditions of PGP here.
Risks come with your genome being identifiable as you.