Respecting the autonomy of participants in genetic studies is necessary for long term sustainability of the genomics ecosystem.
Yaniv Erlich
Personally identifiable information is data that, even if it does not link immediately to the person who generated it, can be traced back and de-anonymized. The more dimensions the data spans, the more variability it shows, the more likely it is to find an exact match to one single person.
Genome data, the sequence of base pairs in a person’s DNA is probably the most personal of all today’s data. It is unique not only to every human -more even than fingerprints- but it also ties together families, closer or more remote relatives, and even ethnic communities.
Yaniv Erlich and his research team has put together a good summary of what DNA databases and ancestry-related research entails in terms of informational self-determination. The conclusion: We need privacy-preserving mechanisms like differential privacy and homomorphic encryption.
http://science.sciencemag.org/content/early/2018/10/10/science.aau4832