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Category Archives: Medicine

The Web of Legal Protections for Participants in Genomic Research

Wolf, Leslie E. and Fuse Brown, Erin C. and Kerr, Ryan and Razick, Genevieve and Tanner, Gregory and Duvall, Brett and Jones, Sakinah and Brackney, Jack and Posada, Tatiana, The Web of Legal Protections for Participants in Genomic Research (February 4, 2019). Health Matrix: Journal of Law-Medicine, vol. 29, 2019; Georgia State University College of Law, Legal Studies Research Paper . Available at SSRN: https://ssrn.com/abstract=3328892

“The identification and arrest of the Golden State Killer using DNA uploaded to an ancestry database occurred shortly before recruitment for the National Institutes of Health’s (NIH) All of Us Study commenced, with its goal of enrolling and collecting DNA, health, and lifestyle information from one million Americans. It also highlighted the need to ensure prospective research participants that their confidentiality will be protected and their materials used appropriately. But there are questions about how well current law protects against these privacy risks. This article is the first to consider comprehensively and simultaneously all the federal and state laws offering protections to participants in genomic research. The literature typically focuses on the federal laws in isolation, questioning the strengths of federal legal protections for genomic research participants provided in the Common Rule, the HIPAA Privacy Rule, or the Genetic Information Nondiscrimination Act (GINA). Nevertheless, we found significant numbers and surprising variety of state laws that provide greater protections than federal laws, often filling in federal gaps by broadening the applicability of privacy or nondiscrimination standards or by providing important remedies for individuals harmed by breaches. Identifying and explaining the protections these laws provide is significant both to allow prospective participants to accurately weigh the risks of enrolling in these studies and as models for how federal legal protections could be expanded to fill known gaps.”

Privacy and security risks with genetic tests like 23andMe, Ancestry

Business Insider – After you spit into a tube for a DNA test like 23andMe, experts say you shouldn’t assume your data will stay private forever “It may be getting easier to link your private and anonymized DNA data to your identity. That means the genetic data you share with a testing company — which… Continue Reading

Why Wikipedia’s Medical Content Is Superior

Slate: “…Like most encyclopedias, Wikipedia typically functions as a launch pad that provides a general overview of a topic and points to further or original sources. But at least one new study suggests that Wikipedia is superior to other medical sources in at least one key respect: short-term knowledge acquisition. That is, when it comes… Continue Reading

Shutdown Hits Industries Nationwide

WSJ.com [paywall]: “The partial government shutdown is affecting a wide range of business and financial concerns nationwide. From a report: Shuttered government offices are stalling the approval of new loans, initial public offerings, the processing of tax documents, and the approval of new products such as prescription drugs, among other effects. While some programs are… Continue Reading

Study – U.S. Health Care Spending Highest Among Developed Countries

Johns Hopkins: “The United States, on a per capita basis, spends much more on health care than other developed countries; the chief reason is not greater health care utilization, but higher prices, according to a study from a team led by a Johns Hopkins Bloomberg School of Public Health researcher. The paper appears in the January… Continue Reading

A Medical-Screening Checklist for Older Adults

WSJ.com [paywall] “…A good topic to start the New Year. Figuring out just what illnesses you should be poked and prodded for, and when, is one of the most important ways you can take care of yourself. Unfortunately, many of us probably know more about the tests and shots our pets need than the ones… Continue Reading

Dr. Google Is a Liar. Fake medical news threatens our lives.

The New York Times – Dr. Google Is a Liar. Fake news threatens our democracy. Fake medical news threatens our lives: “…While misinformation has been the object of great attention in politics, medical misinformation might have an even greater body count. As is true with fake news in general, medical lies tend to spread further… Continue Reading

Researchers try to cope without HHS public medical guideline database five months after its takedown

Sunlight Foundation: “When the Agency for Healthcare Quality and Research (AHRQ) shut down its National Guideline Clearinghouse (NGC) in July, medical professionals who relied on the database, hosted at guideline.gov, reacted with alarm. For nearly 20 years, AHRQ’s repository of medical guidelines had served as the gold standard for clinicians, helping guide day to day… Continue Reading

The 100 greatest innovations of 2018

Popular Science: “Our 31st annual Best of What’s New list is the culmination of a year spent obsessing over, arguing about, and experiencing the newest technologies and discoveries across 10 distinct disciplines [aerospace, gadgets, auto, home, security, entertainment, recreation, health, software, engineering,] Yes, there are eye-poppingly-bright TVs. Sure, there are video games that will suck… Continue Reading

Genome Hackers Show No One’s DNA Is Anonymous Anymore

Wired: “In 2013, a young computational biologist named Yaniv Erlich shocked the research world by showing it was possible to unmask the identities of people listed in anonymous genetic databases using only an Internet connection. Policymakers responded by restricting access to pools of anonymized biomedical genetic data. An NIH official said at the time, “The… Continue Reading

How People Learn II Learners, Contexts, and Cultures (2018)

“There are many reasons to be curious about the way people learn, and the past several decades have seen an explosion of research that has important implications for individual learning, schooling, workforce training, and policy. In 2000, How People Learn: Brain, Mind, Experience, and School: Expanded Edition was published and its influence has been wide… Continue Reading

The 2019 Medicare & You Handbook is now available

Your online connection to the “Medicare & You” handbook. Several formats are available: PDF, Large Print PDF, eBook, Audio, Braille, Paper handbook. [h/t Pete Weiss] Continue Reading