Autism Data Privacy

Supreme Court Grants DOGE Access to Social Security Data

The Supreme Court issued two rulings favoring the Department of Government Efficiency (DOGE). First, it permitted DOGE access to sensitive Social Security data for fraud detection and system modernization, despite concerns about a potential fishing expedition and privacy violations. Second, the Court temporarily halted a lower court order requiring DOGE to release documents under a transparency law, narrowing the scope of the disclosure while leaving the possibility of some future release open. These decisions, met with dissent from the Court’s liberal justices, represent significant victories for DOGE amidst ongoing controversy surrounding its data handling practices and transparency. The rulings have significant implications for future cases involving DOGE’s access to government data.

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Trump’s Palantir Database: A Dystopian Surveillance State?

Following the largely secretive consolidation of citizen data under a previous government efficiency initiative, Palantir Technologies has received over $113 million in government funding since the Trump administration began, a figure projected to increase significantly with a recent $795 million Department of Defense contract. The company’s data analysis tool, Foundry, is already utilized by several agencies, facilitating White House data aggregation. Discussions are underway to expand Palantir’s reach to agencies such as the Social Security Administration and the IRS. This expansion has occurred despite prior legal challenges to similar data collection efforts.

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Illinois Governor Blocks Federal Autism Data Access

Illinois Governor JB Pritzker issued a groundbreaking executive order prohibiting state agencies from sharing residents’ autism-related personal health data with the federal government, a move directly opposing a plan by HHS Secretary Robert F. Kennedy Jr. This action, unprecedented nationwide, prioritizes the privacy and dignity of individuals with autism, shielding them from potential discrimination and misuse of their information. While Kennedy claims adherence to privacy laws, concerns remain regarding the potential for future data breaches and the inappropriate use of such sensitive information for identifying the causes of autism. The executive order covers state agencies, contractors, and vendors, ensuring comprehensive protection of personal data.

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RFK Jr.’s Autism Database Plan Sparks Outrage Over Privacy Concerns

The NIH, in collaboration with CMS, will create a database using Medicare and Medicaid data to research autism’s causes. This “real-world data platform” will link insurance claims, medical records, and data from wearable devices. The initiative aims to identify the root causes of autism and other chronic diseases, with autism serving as the initial focus. However, concerns regarding data privacy and potential misuse have been raised by privacy experts and the autistic community. Despite assurances of data protection, anxieties persist given past instances of data breaches and the HHS Secretary’s history of promoting unsubstantiated claims about autism.

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Pritzker Signs First-in-Nation Order Protecting Autism Data, Defying RFK Jr.

Governor JB Pritzker will sign an executive order prohibiting the mass collection and sharing of Illinois residents’ autism-related data. This action directly counters recent statements by the U.S. Health and Human Services Secretary advocating for extensive research into autism’s causes, including exploring environmental factors. The order mandates that state agencies and their contractors can only collect or disclose such data when legally required for care, compliance, or program eligibility, prioritizing data privacy and anonymization. Illinois will be the first state to enact such protective measures, prioritizing the dignity and rights of individuals with autism.

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