The Council for Responsible Genetics has just released a new issue of GeneWatch devoted to the developing field of whole genome sequencing. Articles include interviews with an Aetna medical director, an appointee to the Presidential Commission for the Study of Bioethical Issues, and a professor at the Institute of Genetic Medicine at Johns Hopkins University.
The interviewees all agreed that sequencing technology is still a long way from being able to offer the “personalized medicine” we’ve heard so much about, and that in the meantime, there are a few potential pitfalls about which we should be talking. Anita Allen of the Presidential Commission warns of privacy concerns surrounding whole genome sequencing data collection, storage, and sharing.
The issue also includes several thoughtful commentaries. Dr. Helen Wallace, head of Genewatch UK, also voices privacy concerns. She notes that surreptitious surveillance could easily become a reality because “[i]f everyone has their genetic sequence stored in a database, this allows them to be tracked using the sequence as a unique identifier which is left on coffee cups and wine glasses wherever they go.”
In addition to serious concerns, the issue raises questions about the science itself. Donna Dickenson points out that whole genome sequencing really hasn’t caused the “paradigm shift” in medical care that’s been touted by scientists and politicians alike. Genetic testing for cancer susceptibility is now a routine part of clinical care, but because there are so many parts of the genome “that are associated with cancer in a yet undetermined way,” these tests can only be used for a few types of cancers. Indeed Dickenson notes that most major diseases are caused by complex interactions among genes, and between genes and environmental factors. Thus for most people, genome sequencing would do little to guide medical care.
If the scientific evidence alone does not substantiate the claim of a medical revolution, then the enormous interest in genome sequencing must be attributable at least in part to social and economic factors. And surely there’s reason to believe that they loom large. As Dickenson notes, expiring patents drive pharmaceutical companies to look for new markets, and it would be advantageous for the medical care system if patients could be persuaded to pay for genetic typing out of their own pockets.
For these views and more, don’t miss GeneWatch: Whole Genome Sequencing in Medicine.
Previously on Biopolitical Times:
Posted in Emily Stehr's Blog Posts, Sequencing & Genomics, US Federal
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