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Part VI: Project
Literacy Lesson 11: Participating in the Personal Genome Project PGP results will be published on publicly accessible websites. Although the PGP plans to implement standard security measures for the websites, the PGP does not guarantee that your personal data will remain confidential or that you can maintain your anonymity. When you consider that your PGP results will document your genome, hair and eye color, height, facial features, and unique medical conditions, it becomes clear that the PGP must warn participants that promises of anonymity are neither realistic nor ethical. Even when strong security measures are in force, breaches happen. Hackers could gain access to your personal data; computers could get stolen; researchers or participants could unintentionally expose data that reveal more personal information than they intended. In addition, computer forensics experts can sometimes retrieve data that have been deleted from computer hard drives. So, even if you request that all your data be removed from the project databases, it is impossible to confirm that the data were fully removed. Because of these issues, the PGP cannot promise permanent confidentiality or anonymity. To participate, you should be comfortable with this fact.
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See this website from Harvard Medical School for information about
scenarios where anonymity can be compromised:
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