By Katherine Kwong Our private health decisions may not be as private as we’d like to think. A recent article in the Wall Street Journal revealed a potentially uncomfortable situation: employers using health care analytics companies to mine employees’ health data to determine which employees may be about to make certain health decisions. While this…
[Cross-posted from the Genomics Law Report blog] By Jennifer K. Wagner The Equal Employment Opportunity Commission (EEOC) is responsible for enforcing Title II of the Genetic Information Nondiscrimination Act (GINA), which prohibits employers from requesting genetic information (defined broadly) from their prospective, current, or former employees. GINA contains only six limited exceptions to this prohibition,…
By Michelle Meyer Proposed changes to the federal Common Rule would ask patients for the first time to decide whether to allow their non-identified, leftover tissue to be used for research or thrown away. For that choice to be meaningful, the public needs to be aware of the nature, risks, and benefits of biospecimens research,…
By Katherine Kwong The direct-to-consumer genetic testing company 23andMe was widely discussed in the news recently after it announced it would resume providing health information to customers. Less widely reported was another important announcement: for what appears to be the first time, 23andMe has released a public report about the number of requests it has…
By I. Glenn Cohen As Michelle noted, the Notice of Proposed Rule Making (NPRM) on human subjects research is out after a long delay. For my (and many Bill of Health bloggers’) view about its predecessor ANPRM, you can check out our 2014 book, Human Subjects Research Regulation: Perspectives on the Future. Here is HHS’s own summary of…
By Nicholson Price The 21st Century Cures Act is a big deal; the House passed it handily, and we’re still waiting to see what the Senate does. A lot has been written about what it does in terms of changing FDA review processes, and a fair bit about the lovely increase in funding for NIH…
By Nicolas Terry Cross Posted from Health Affairs Blog Health care lawyers justifiably ignored the 2012 Obama administration consumer privacy framework because it expressly and broadly exempted entities subject to HIPAA, stating “To avoid creating duplicative regulatory burdens, the Administration supports exempting companies from consumer data privacy legislation to the extent that their activities are subject to existing Federal…
By Allison M. Whelan (Guest Blogger) On December 18, 2014, President Obama signed into law the Newborn Screening Saves Lives Reauthorization Act of 2014. The Act includes new timeliness and tracking measures to ensure newborn babies with deadly yet treatable disorders are diagnosed quickly. These changes responded to a Milwaukee Journal Sentinel investigation that found thousands…
By Lauren Taylor Earlier this month, Charles Ornstein explored a New York City family’s charge that their privacy was violated by a local hospital and a reality television show in ProPublica. More specifically, he details how the death of one Mr. Mark Chanko was filmed at NY Presbyterian Hospital without the family’s consent, and then…
Join us for an important public forum: Constitutional Implications of Ebola:Civil Liberties & Civil Rights In Times of Health Crises This public forum addresses the constitutional and public health implications of Ebola response in the United States. According to state and federal laws, patient information is deemed private and is to be held in strict…
