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Cinnamon Bloss , Ph . D . ’ 07 Clinical Psychologist and Assistant Professor , UC San Diego
What sparked your interest in how people react and respond to emerging biomedical technologies ? Cinnamon Bloss : In graduate school ( the clinical psychology program here in the UC San Diego School of Medicine ) my thesis work was focused on a simple genetic association study — the role of a single gene in cognitive function in children . But around that same time , gene sequencing advances began to allow for genome‐wide association studies . That ’ s when I thought — why study one gene , when I could study the whole genome ? Then direct‐to‐consumer genomic sequencing companies came on the scene . This became controversial because many people thought ( and still do think ) that genetic information — including risk for certain diseases — shouldn ’ t be presented directly to patients , without a physician acting as an intermediary . They worried
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that people would panic and we ’ d see a spike in unnecessary doctors ’ visits and disease screenings . On the other side of the argument , many people think direct‐to‐consumer sequencing empowers patients , democratizing health care . That ’ s when I began to wonder … who ’ s right ? How do people react and respond to their genomic information ?
What does your research say about direct-to-consumer genomic sequencing ? CB : A few years ago , in a paper published in the New England Journal of Medicine , we examined psychological , behavioral and clinical effects among 2,000 people who had their genomes sequenced and were given the data to assess their own disease risks . We measured their anxiety levels , dietary fat intake and exercise behavior before genomic testing and four to eight months afterward . We also recorded any test‐related distress and the use of healthscreening tests after testing .
And funny thing — we found that the participants didn ’ t really make positive behavior changes at all ! Nor did they stress about the test itself or seek additional screening tests . This is technically what we call a “ negative ” result , but I was invited to present these
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findings to the FDA Advisory Panel in order to help inform consumer genomics policy . It just goes to show that you can ’ t make assumptions about how people will react to new technology .
What about privacy concerns when it comes to our genomic data ? CB : When you sign up to have your genome sequenced with a direct‐to‐consumer company , you ’ re subject to the terms and conditions of that company . Sometimes you have a variety of options , including the option to give the sequencing company permission to access , share and even sell your information for research purposes or to other for-profit pharmaceutical companies . It ’ s up to the consumer to understand these options and to assess his or her personal comfort level .
Science magazine recently had a cover that read “ Is this the end of privacy ?” I ’ m interested in that question and how different people interpret it . So my next big project is on data privacy — all kinds of data , not just genomic . We want to determine how people define privacy and how they engage with the issue . We ’ ll also explore new tools to make privacy agreements more transparent and help
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people make more informed decisions about how to use a particular app or share their personal information .
What other emerging technologies are you studying ? CB : We ’ re making plans with collaborators to study responses to other emerging technologies , including wearable health monitors , gene editing in mosquitoes and microbiome sequencing .
If our microbiome study gets funded , we ’ ll be working with Rob Knight , Ph . D ., and his lab in the School of Medicine . They run a crowdfunded , citizen science effort called the American Gut Project , in which people can have their own microbiomes sequenced . That is , they learn what types of microbes live where on their bodies , and how that makeup compares to other participants in the project . My biggest questions are : why do people seek out this information ? Is it because they think it might help them deal with an illness ? Or is it just curiosity ? Do they share that microbiome information with their doctors ? If so , what are doctors doing with this information ?
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