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Genetic data could easily compromise a patient’s identity if new safeguarding policies are not implemented.

By Anonymous on Feb 11, 2013

Researchers from the Whitehead Institute of Biomedical Research in Cambridge, MA and Tel Aviv University developed an algorithm that identified last names using information that was sourced from the Y chromosome in a private genetic study. By using this chromosomal data to search for corresponding surnames in public databases, these researchers were able to decipher the surname of one in every eight people from a sample of 911 American men. Other private information could also be discovered which included their geographic locations or the identities of their relatives. This research, as published in the Journal Science focused on the Y chromosome because of its connection to surnames which are normally passed down through male lineage.

Many will agree that genetics, the advancement of DNA sequencing and the real world data movement will lead to better treatments for patients, especially those with complex diseases. However, no patient would want or expect their data to be exploited as a result of better medication.

Prof. Eran Halperin of TAU's Blavatnik School of Computer Science and Department of Molecular Microbiology and Biotechnology says: “Having such data is critical to scientific research, so we must look for ways to minimize the risk, including better techniques for encrypting genetic data, education for study participants and researchers, and new legislation to protect such information and prevent its misuse.”

Traditionally, information about an individual’s entire genome is available although this project wanted to discover how much data can be discovered about a person using a small amount of chromosomal data. As part of this research, the family names of 12% of participants in the sample were also discovered. Researchers note that a study taking a broader approach to sourcing private information from genetic studies could reveal even more identities. Additionally, those with rarer surnames could be identified more easily than those with conventional names.

While some would argue that there are positive uses of this data, other than the advancement of medicine, such as identifying bodies in mass disasters, there are also serious risks that need to be managed. Another researcher on this project, PhD student David Golan of TAU's Department of Statistics and Operations Research, explains that insurance companies could use this genetic information to determine whether you are at a higher risk of illness and then refuse to give you coverage. Even if genomic data originally had anonymity, an individual’s privacy could still be invaded.

As the personalised medicine field continues to grow, so will the data privacy problem. Steps must be taken to allow scientists to access valuable genomic information while keeping identities secure. Genetic data must be published in a way that maintains privacy but still upholds scientific value. New legislation that establishes safeguards for maintaining public and private databases as well as one against anti- genetic discrimination should also be developed. Most important of all, patients who publishes their genetic information or take part in studies should be aware of the possible implications.

Would you be more likely to share your genetic data if you knew its benefits and its risks?