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    Archive for the ‘DNA’ Category

    New York Times: Mining Electronic Records for Revealing Health Data

    Tuesday, January 22nd, 2013

    The New York Times reports on the issue of data mining electronic medical records and the privacy issues that can arise:

    Over the past decade, nudged by new federal regulations, hospitals and medical offices around the country have been converting scribbled doctors’ notes to electronic records. Although the chief goal has been to improve efficiency and cut costs, a disappointing report published last week by the RAND Corp. found that electronic health records actually may be raising the nation’s medical bills.

    But the report neglected one powerful incentive for the switch to electronic records: the resulting databases of clinical information are gold mines for medical research. The monitoring and analysis of electronic medical records, some scientists say, have the potential to make every patient a participant in a vast, ongoing clinical trial, pinpointing treatments and side effects that would be hard to discern from anecdotal case reports or expensive clinical trials. […]

    But the challenges posed by this sort of research are significant. The information entered into a medical record may be wrong, and diagnostic codes are notoriously unreliable, according to [Nicholas Tatonetti, assistant professor of biomedical informatics at Columbia,] partly because they are also used for billing. And doctors don’t think like researchers. […] Read more »

    Telegraph (UK): Privacy fears over DNA database for up to 100,000 patients

    Thursday, December 13th, 2012

    The Telegraph reports on privacy questions about a new DNA database in the United Kingdom:

    The UK will be the first country to introduce high-tech DNA mapping within a mainstream health system in a move designed to help it lead the world in tackling cancer and rare diseases, Downing Street said.

    But campaigners warned the project, in which patients will have to opt out of having their personal DNA code sequenced if they do not wish to be involved, comes with “very real privacy concerns”.

    If extended to the whole population, individuals and their relatives could be identified and tracked by matching their DNA to their genome stored in healthcare records in a move which could “wipe out privacy”, GeneWatch UK said. […] Read more »

    Op-Ed at Slate: Why We Need New Rights to Privacy

    Tuesday, November 6th, 2012

    At Slate, Evan Selinger writes about the shortcomings of current protections for privacy rights:

    Thanks to the real state website Zillow, it’s now super easy to profit from your neighbor’s suffering. With a few easy clicks, you can find out “if a homeowner has defaulted on the mortgage and by how much, whether a house has been taken back by the lender, and what a house might sell for in foreclosure,” as the Los Angeles Times recently reported. After using the service, you can stop by the Johnsons’ to make them a low-ball offer, perhaps sweetening the exploitation with a plate of cookies.

    Maybe that’s not fair. Zillow doesn’t let people opt-out, but the company omits borrowers’ names, has a process for correcting mistakes, and uploads only legal information that was previously—albeit inconveniently—available.

    Zillow is cutting the cord of time-consuming real estate bureaucracy, but it’s just part of a larger story presciently described in a 2007 SMU Law Review article by University of Colorado Law School professor Harry Surden. According to Surden, big data networks persistently chip away at privacy interests and expand the surveillance society’s reach—and we’re about to see a lot more of it. Read more »

    Presidential Commission for the Study of Bioethical Issues: Privacy and Progress in Whole Genome Sequencing

    Friday, October 12th, 2012

    The Presidential Commission for the Study of Bioethical Issues has released a new report, “Privacy and Progress in Whole Genome Sequencing” (commission pdf; archive pdf), recommending more protections for the privacy of individuals’ genetic data in order to avoid malicious use of that data by companies or individuals. Here’s an excerpt:

    Over the course of less than a decade, whole genome sequencing has progressed from being one of our nation’s boldest scientific aspirations to becoming a readily available technique for determining the complete sequence of an individual’s deoxyribonucleic acid (DNA)—that person’s unique genetic blueprint. With this tremendous advance comes the accumulation of vast quantities of whole genome sequence data and complex questions of how—across a multitude of clinical, research, and social environments—to protect the privacy of those whose genomes have been sequenced. Collections of whole genome sequence data have already been key to important medical breakthroughs, and they hold enormous promise to advance clinical care and general health moving forward. To realize this promise of great public good ethically, individual interests in privacy must be respected and secured.

    Large-scale collections of genomic data raise serious concerns for the indi- viduals participating. One of the greatest of these concerns centers around privacy: whether and how personal, sensitive, or intimate knowledge and use of that knowledge about an individual can be limited or restricted (by means that include guarantees of confidentiality, anonymity, or secure data protec- tion). Because whole genome sequence data provide important insights into the medical and related life prospects of individuals as well as their relatives— who most likely did not consent to the sequencing procedure—these privacy concerns extend beyond those of the individual participating in whole genome sequencing. These concerns are compounded by the fact that whole genome sequence data gathered now may well reveal important information, entirely unanticipated and unplanned for, only after years of scientific progress. Read more »

    Bioethics Commission: Do privacy concerns follow the coffee cup?

    Tuesday, August 7th, 2012

    At its blog, the Presidential Commission for the Study of Bioethical Issues covers its meeting on genomic privacy. The commission will issue a report on genomics and privacy in the fall. Here are a few excerpts from the commission’s blog posts on privacy and genetic data:

    Post: “On the Frontiers of Technology and Privacy

    Latanya Sweeney, Ph.D., director and founder of Harvard University’s Data Privacy Lab, has made a career of weaving technology and policy together. Her presentation today provided real-world examples in the realm of consumer data privacy that helped the Commission continue its examination of genomics and privacy.

    Sweeney’s exploration of how medical data is handled—mapping out how patient files were widely shared among not just health care providers but also researchers, for-profit companies, and even transcription companies—was widely publicized and one of many works that had a profound impact on U.S. policy. She has appeared in hundreds of news articles and has written numerous academic papers not only on how technology challenges privacy, but how technology can also save privacy. Her work was cited in the original publication of the HIPAA Privacy Rule and has been applauded by consumer advocacy groups; her privacy technologies have been licensed by numerous companies.

    Post: “Do privacy concerns follow the coffee cup?

    Ken Chahine, Ph.D., is the Senior Vice President of Ancestry.com and General Manager of AncestryDNA, two related companies that take great pains to maintain data confidentiality and security. The data collection processes of the two companies are designed with privacy first in mind, even down to the collection kit that strives to preserve the anonymity of their customers. Read more »

    Article 29 Working Party Adopts Opinion on Biometric Technologies

    Friday, May 18th, 2012

    The EU’s Article 29 Working Party on the Protection of Individuals with regard to the Processing of Personal Data has released an opinion (Working Party pdf; archive pdf) on developments in biometric technologies, such as the lower cost and ease with which biometric technologies can be bought. The Working Party advises the European Commission on privacy and data protection issues.

    In a news release (pdf), the Working Party said, “Where such commonly available biometric technologies are used without adequate safeguards the right to data protection of the concerned individual is at risk. In addition, many types of biometric data can be collected without the individual’s cooperation or knowledge, such as through video surveillance and facial recognition systems, and many violations could occur unnoticed.” Here’s the executive summary of the opinion:

    Biometric systems are tightly linked to a person because they can use a certain unique property of an individual for identification and/or authentication. While a person’s biometric data can be deleted or altered the source from which they have been extracted can in general neither be altered nor deleted.

    Biometric data are successfully and efficiently used in scientific research, are a key element of forensic science and a valuable element of access control systems. They can help to raise the security level and make identification and authentication procedures easy, fast and convenient. In the past the use of this technology was expensive and as a result of this economic constraint the impact on individuals’ data protection rights was limited. Read more »