ACLU Comment on Congressional Move to Allow Internet Providers to Sell Consumer Data Without Permission

WASHINGTON – The American Civil Liberties Union, the Autistic Self Advocacy Network (ASAN), and 80 other disability rights, civil rights, and public health organizations sent a letter to Secretary of Health and Human Services Robert F. Kennedy, Jr. today raising significant concerns with the National Institutes of Health’s (NIH) proposal to create a national autism “registry.” The registry was detailed during an April 21 presentation by NIH Director Jay Bhattacharya, which he described as a “real-world data platform” for “developing national disease registries, including a new one for autism.” The Department of Health and Human Services (HHS) has since claimed it is not creating an “autism registry,” but the department has failed to engage with autistic people and advocates, exacerbating the lack of clarity. “Instead of engaging with the communities this proposal would impact most, federal health agencies have taken every opportunity to shut disabled and autistic people out of the conversation, leaving unanswered questions, a sense of alarm, and deepening mistrust,” said Vania Leveille, ACLU senior legislative counsel. “Trust in federal health data requires affirmative, good faith engagement with autistic people, appropriate safeguards for privacy, and ensuring any proposal helps – not hurts – the communities impacted.” The letter outlines the many unanswered questions left by NIH’s data platform proposal, including what data it will collect, what sources it will rely on, how it will anonymize and secure the data. It also highlights the increased risk of surveillance, stigmatization, and marginalization from data collection, particularly for disabled people – who have a long and troubled history with government efforts to find and track disability for the purpose of eliminating it. “It’s no secret that this proposal has created a lot of fear and confusion in the autistic community.” said Colin Killick, executive director of the Autistic Self Advocacy Network. “We continue to advocate and support research into autism that autistic people want conducted, but it is critical that autistic people’s private data not be shared without our consent. We hope the administration answers our questions to shine light on how autistic people and our rights will be protected.” The letter also establishes three key steps NIH and HHS must take to establish trust in its proposed data platform: Meaningful communication with autistic people and advocates; fundamental privacy safeguards to prevent misuse and abuse; and ensuring the data platform advances the well-being of autistic people, people with disabilities, and the public health while minimizing potential harms. The letter is here: https://www.aclu.org/documents/letter-to-hhs-secretary-robert-f-kennedy-jr-on-concerns-with-proposed-autism-registry

WASHINGTON — The American Civil Liberties Union today urged the U.S. District Court for the District of Columbia to grant a preliminary injunction and order expedited processing of a Freedom of Information Act (FOIA) request sent to the Social Security Administration (SSA). The FOIA request, originally filed in February, seeks urgent transparency about the so-called Department of Government Efficiency’s (DOGE) secretive efforts to access and analyze Americans’ sensitive personal information controlled by the Social Security Administration. In its FOIA request, the ACLU asked for any records that reveal whether DOGE or its representatives have sought or obtained access to databases containing personally identifiable information, financial records, health care data, or other sensitive government-held records of Americans. The request also sought information on DOGE’s use of artificial intelligence (AI) to analyze government data. Despite the urgency of the situation, the SSA declined ACLU’s request for expedited processing and has so far failed to respond to the ACLU’s appeal. Also concerning is the recent news that DOGE has already started removing some protections around personal data, such as Social Security numbers, birth dates, employment history, disability records, and medical documentation. “Today’s filing marks a critical step in uncovering the full extent of DOGE’s access to the U.S. Social Security Administration’s database,” said Michelle Fraling, Skadden Fellow with the ACLU’s Center for Liberty. “Recent reports that DOGE intends to consolidate federal data into a centralized system only heighten the need to obtain this information. The public has a right to know, now, who is accessing their Social Security numbers, financial records, and medical history.” This comes amidst DOGE’s obsessive race to build a single centralized database with vast troves of personal information about millions of U.S. citizens and residents, a campaign that seriously implicates individuals’ privacy rights. One major concern is that the data consolidated by DOGE could be used against political foes or for targeted decisions about funding or basic government services. There is also concern about the risk of exposing data to hackers and other adversaries. A new report from the ACLU analyzes the vast array of surveillance, privacy, and cybersecurity risks of data consolidation, and the technical issues and legal implications those efforts pose. “As DOGE embarks on unprecedented efforts to consolidate federal data, the American people have a right to understand exactly what it is they are doing,” said Cody Venzke, senior policy counsel at ACLU. “For decades, agencies have been required by federal law to give access to our data only if it was necessary for federal employees to carry out their duties. Failure to meet those requirements increases the risk that our data will be mishandled, misused, or exfiltrated in a data breach.”

Today, Human Rights First, the American Civil Liberties Union (ACLU), and the New York Civil Liberties Union (NYCLU) filed an amicus brief with the U.S. District Court for the Eastern District of New York, in support of Democracy for the Arab World Now’s (DAWN) efforts to block an individual sanctioned for violence in the Israeli occupied West Bank from accessing information about DAWN’s advocacy for sanctions against him. The brief argues that various protections, including the First Amendment and reporter’s privilege, bar the court from granting the discovery requested in this case. The brief also emphasizes how such discovery requests, if granted, would put civil society groups at serious risk of irreparable harm and chill their vital advocacy work on human rights and corruption issues. In August 2024, Isaac Levi Pilant was sanctioned by the U.S. government under the West Bank sanctions program, for attacking and forcefully expelling Palestinians from a West Bank settlement. At the time, human rights groups, media outlets, and witnesses had documented Pilant’s alleged role in violent attacks against Palestinians, and DAWN had publicly recommended that the U.S. government impose sanctions on him and others for such violence. The sanctions against Pilant were lifted in January 2025, after President Trump effectively terminated the West Bank sanctions program. Pilant then filed an application against DAWN and its executive director, Sarah Leah Whitson, pursuant to a U.S. law that provides a mechanism for foreign litigants to obtain discovery from people and entities in the United States.The application seeks a court order for information related to DAWN’s investigation of Pilant and its sanctions advocacy efforts. Pilant says he seeks the information for use in a possible future defamation case in Israel against an Israeli human rights organization. The brief explains how the U.S. government has established frameworks and processes to encourage nongovernmental organizations (NGOs) to share sensitive information that can assist it in more effectively implementing various human rights and corruption sanctions and visa restriction programs. Undermining the protections for NGOs to securely and confidentially share this information would not only impact the ability of the U.S. government to use such tools to hold human rights abusers and corrupt actors accountable, but it would also put NGOs, victims of abuse, and others in civil society in jeopardy by opening them up to retaliation and harassment from people they accuse of human rights violations. “Human rights and corruption sanctions are impactful tools of accountability because they threaten the reputations and financial interests of abusers. Forcing NGOs to share information about their sanctions advocacy would put them at grave risk of violence and retaliation from repressive governments and powerful private individuals,” said Amanda Strayer, Senior Counsel for Accountability at Human Rights First. “U.S. courts should not become a forum for sanctioned actors to harass and seek retribution against civil society groups that advocate for measures to hold them accountable.” The brief also argues that Pilant’s broad discovery request implicates information protected under the First Amendment and the reporter’s privilege, which provide grounds to reject his request under the Section 1782 statute. Supreme Court precedent requires the Court to give weight to the serious First Amendment and policy considerations before granting such a request. In this case, these considerations should result in the Court denying Pilant’s discovery request. “It is the nature of human rights reporting that it often draws the ire of accused human rights violators. But the law is clear that such individuals cannot coopt U.S. courts in an attempt to harass and endanger human rights organizations and the victims of abuses whose stories they safeguard. That’s why this is an easy case, and we hope the court has no trouble concluding that the First Amendment protects DAWN’s rights to free speech and association, and bars enforcement of the meritless request for intrusive discovery,” said Nathan Freed Wessler, Deputy Director of the ACLU Speech, Privacy, and Technology Project. “NGOs can play a critical role in providing accountability for human rights abuses, and the Constitution protects them from being forced to reveal certain confidential aspects of that work,” said Bobby Hodgson, assistant legal director at the New York Civil Liberties Union. “DAWN is being targeted by a foreign litigant implicated in serious human rights violations in an effort to weaponize our court system to silence critics. We urge the court to reject these requests and recognize that the discovery process does not create an end run around the First Amendment.”