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    The Privacy Risks Of DNA Sequencing
    By News Staff | February 7th 2013 11:08 AM | 2 comments | Print | E-mail | Track Comments

    Using chromosomal data drawn from genetic databases, a group of researchers were able to identify the surname of one in every eight people from a sample of 911 American men. Sometimes other private information could be determined, including their geographic locations or the identities of their relatives.  

    DNA sequencing has obviously led to enormous advancements but any great new technology brings policy and implementation concerns. So extensive networked databases can give researchers valuable knowledge about causative and preventative factors for disease, and identify new targets for future treatments, but the wider availability of such information also has a significant downside; the risk of revealing personal information to people who may not need it and without the permission of the person whose information is contained in there.

    Researchers from Tel Aviv University and the Whitehead Institute of Biomedical Research in Cambridge developed an algorithm that can identify last names using information gathered from the Y chromosome, which passes from father to son. This finding shows how genetic data can be used to compromise an individual's privacy, says Prof. Eran Halperin of TAU's Blavatnik School of Computer Science and Department of Molecular Microbiology and Biotechnology, who worked on the project with PhD student David Golan of TAU's Department of Statistics and Operations Research and Dr. Yaniv Ehrlich of the Whitehead Institute.

    Weighing science and privacy

    "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," Prof. Helperin says.

    Although information about a person's entire genome is often available, this project sought to determine how much can be discovered about an individual using only a small amount of chromosomal data. The researchers chose to focus on the Y chromosome, which is passed down through the male lineage, because of its connection to surnames, which are commonly passed down through the male lineage as well.

    Data relating to the Y chromosome of the sample of 911 American men — whose genetic information was collected through a private company — was used to search for their corresponding surnames in public databases. The researchers' algorithm was able to identify the family name of 12 percent of the participants.

    Because they were only looking for near-precise matches, this is a very conservative return, notes Prof. Halperin. A broader search would reveal a short-list of possibilities that could reveal even more identities. And with some additional details that are commonly included in study databases, such as age group or geographic location, there is a much higher chance of tracing a person's identity, explains Golan. Those with rarer surnames were also easier to identify accurately than those with more common names.

    Mitigating risk

    While Prof. Halperin believes there are some positive applications of these findings, such as searching for lost relatives or identifying bodies in mass disasters, there are also serious security issues to consider. Even if the genomic data is originally anonymous, it can still be used to invade an individual's privacy — and that of their family as well. Insurance companies could use this genetic information to determine if you are at higher risk for a particular illness and ultimately deny coverage, suggests Golan.

    Steps must be taken to ensure that identities are secure while allowing scientists to access valuable genomic information, the researchers say. As credit cards and other forms of ID are encrypted to extract required information while safeguarding personal details, researchers must find a way to publish genetic data in a way that it maintains individuals' privacy but still has scientific value. Those who publish their genomic information, or participate in such studies, should be made aware of the implications. And new legislation concerning the maintenance of private and public databases, as well as anti-genetic-discrimination laws, should be drafted, conclude Prof. Halperin and Golan.


    Published in Science.


    Comments

    Gerhard Adam
    Insurance companies could use this genetic information to determine if you are at higher risk for a particular illness and ultimately deny coverage, suggests Golan.

    Those who publish their genomic information, or participate in such studies, should be made aware of the implications.
    As if we need more reasons for people to not participate in scientific studies.  Given how little is actually understood about gene expression, the use of such data by insurance companies would be practically criminal.

    It's almost like the story-line in "Minority Report" where we attempt to penalize people before an event has occurred, simply because we can speculate about potential.
    Mundus vult decipi
    Hank
    Yes, any sufficiently interesting new technology is going to have policy and ethical implications and this will need to be sorted out.