The Michigan Department of Community Health (MDCH) stores almost 4 million dried blood spot specimens (DBS) in the Michigan Neonatal Biobank. DBS are collected from newborns under a mandatory public health program to screen for serious conditions. At 24 to 36 hours of age, a few drops of blood are taken from the baby’s heel and placed on a filter paper card. The card is sent to the state public health laboratory for testing. After testing, MDCH retains the spots indefinitely for the personal use of the patient and also, pursuant to a 2000 law, for possible research.
Integrating ELSI questions into pilot studies will help NBS programs to better understand the potential impact of screening for a new condition on newborns and families, and make crucial policy decisions aimed at maximized benefits and mitigating the potential negative medical or social implications of screening.
A major factor explaining government actors’ failure to mitigate or avert the Flint, Michigan, water crisis is the sheer complexity of the laws regulating how governmental agencies maintain and monitor safe drinking water. Coordination across agencies is essential in dealing with multiple legal arrangements. Public health legal authority and intervention mechanisms are not self‐executing. Legal preparedness is essential to efficiently navigating complex legal frameworks to address public health threats. The Flint water crisis demonstrates the importance of democracy for protecting the public's health. Laws responding to municipal fiscal distress must be consistent with expected norms of democracy and require consideration of public health in decision making. ContextThe Flint, Michigan, water crisis resulted from a state‐appointed emergency financial manager's cost‐driven decision to switch Flint's water source to the Flint River. Ostensibly designed to address Flint's long‐standing financial crisis, the switch instead created a public health emergency. A major factor explaining why the crisis unfolded as it did is the complex array of laws regulating how governmental agencies maintain and monitor safe drinking water. MethodsWe analyzed these legal arrangements to identify what legal authority state, local, and federal public health and environmental agencies could have used to avert or mitigate the crisis and recommend changes to relevant laws and their implementation. First, we mapped the legal authority and roles of federal, state, and local agencies responsible for safe drinking water and the public's health—that is, the existing legal environment. Then we examined how Michigan's emergency manager law altered the existing legal arrangements, leading to decisions that ignored the community's long‐term health. Juxtaposed on those factors, we considered how federalism and the relationship between state and local governments influenced public officials during the crisis. FindingsThe complex legal arrangements governing public health and safe drinking water, combined with a lack of legal preparedness (the capacity to use law effectively) among governmental officials, impeded timely and effective actions to mitigate or avert the crisis. The emergency manager's virtually unfettered legal authority in Flint exacerbated the existing complexity and deprived residents of a democratically accountable local government. ConclusionsOur analysis reveals flaws in both the legal structure and how the laws were implemented that simultaneously failed to stop and substantially exacerbated the crisis. Policymakers need to examine the legal framework in their jurisdictions and take appropriate steps to avoid similar disasters. Addressing the implementation failures, including legal preparedness, should likewise be a priority for preventing future similar crises.
The multiplicity and age of state confidentiality laws often stymie the flow of public health data. De‐identification promises a solution to this problem, but is shadowed by the specter of re‐identification attacks. This article examines de‐identification's efficacy and legality – ultimately concluding it is a safe and effective data liberation tool.
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