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More Than You Wanted to Know
Perhaps no kind of regulation is more common or less useful than mandated disclosure-requiring one party to a transaction to give the other information. It is the iTunes terms you assent to, the doctor's consent form you sign, the pile of papers you get with your mortgage. Reading the terms, the form, and the papers is supposed to equip you to choose your purchase, your treatment, and your loan well.More Than You Wanted to Knowsurveys the evidence and finds that mandated disclosure rarely works. But how could it? Who reads these disclosures? Who understands them? Who uses them to make better choices?
Omri Ben-Shahar and Carl Schneider put the regulatory problem in human terms. Most people find disclosures complex, obscure, and dull. Most people make choices by stripping information away, not layering it on. Most people find they can safely ignore most disclosures and that they lack the literacy to analyze them anyway. And so many disclosures are mandated that nobody could heed them all. Nor can all this be changed by simpler forms in plainer English, since complex things cannot be made simple by better writing. Furthermore, disclosure is a lawmakers' panacea, so they keep issuing new mandates and expanding old ones, often instead of taking on the hard work of writing regulations with bite.
Timely and provocative,More Than You Wanted to Knowtakes on the form of regulation we encounter daily and asks why we must encounter it at all.
eBook
The global flow of information : legal, social, and cultural perspectives
\"The Internet has been integral to the globalization of a range of goods and production, from intellectual property and scientific research to political discourse and cultural symbols. Yet the ease with which it allows information to flow at a global level presents enormous regulatory challenges. Understanding if, when, and how the law should regulate online, international flows of information requires a firm grasp of past, present, and future patterns of information flow, and their political, economic, social, and cultural consequences.In The Global Flow of Information, specialists from law, economics, public policy, international studies, and other disciplines probe the issues that lie at the intersection of globalization, law, and technology, and pay particular attention to the wider contextual question of Internet regulation in a globalized world. While individual essays examine everything from the pharmaceutical industry to television to \"information warfare\" against suspected enemies of the state, all contributors address the fundamental question of whether or not the flow of information across national borders can be controlled, and what role the law should play in regulating global information flows.Ex Machina seriesContributors: Frederick M. Abbott, C. Edwin Baker, Jack M. Balkin, Dan L. Burk, Miguel Angel Centeno, Dorothy E. Denning, James Der Derian, Daniel W. Drezner, Jeremy M. Kaplan, Eddan Katz, Stanley N. Katz, Lawrence Liang, Eli Noam, John G. Palfrey, Jr., Victoria Reyes, and Ramesh Subramanian\"-- Provided by publisher.
Book
Data Citizenship under the 21st Century Cures Act
A new federal rule facilitates health data exchange and enforces right of access to a computable version of one’s medical record. The essential next steps include addressing cybersecurity, privacy, and insurability risks.
Journal Article
Implementing the Cures Act — Bringing Consumer Computing to Health Care
The Office of the National Coordinator for Health Information Technology, in implementing provisions of the 21st Century Cures Act, aims to facilitate patients’ use of their own medical information in an economy providing novel services and new choices for care.
Journal Article
US policy requires immediate release of records to patients
Patients and clinicians should embrace the opportunitiesOn 5 April a new federal rule will require US healthcare providers to give patients access to all the health information in their electronic medical records without charge.1 This new information sharing rule from the 21st Century Cures Act of 20162 mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, on request.The US is not alone in providing patients with full online access to their electronic health records. In Sweden, patients gained access to their records between 2012 and 2018.3 Estonian citizens have had full access since 2005.4 The sharing of personal health information isn’t without precedent in the US: around 55 million people already have access to their online clinical notes,5 and many more have access to laboratory results and other parts of their records. But for some US clinicians, the new rule may feel like a shock.6To patient groups, however, it is the culmination of 25 years of advocacy and relationship building with clinicians, researchers, and policy …
Journal Article
Health Research with Big Data: Time for Systemic Oversight
To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features (adaptivity, flexibility, monitoring, responsiveness, reflexivity, and inclusiveness) and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders acquire a common substantive orientation.
Journal Article