Governance

Apr 12 2023

Emerging Technologies, Human Subject Research, and the Common Rule: High level overview of the 2023 OHRP Research Community Forum

Earlier this month, WPF attended a joint conference focused on the shifting dynamics of how the Common Rule that governs human subject research in the US will be interpreted amidst new technological shifts such as AI. The department of Health and Human Services is seeking to define what the next steps and new policy frameworks should be to ensure the Common Rule protects individuals in current and future research environments. Details on the presentations, conversations, and key takeaways in the post.

Oct 03 2022

WHO Health Data Collaborative Meeting: high level overview

Last week, the World Health Organization held an in-person meeting of its health data collaborative leadership, its first face-to-face meeting of this group in four years. WPF attended as a constituency co-chair. Attendees included: members of the Ministries of Health and partner representation from Kenya, Malawi, Cameroon, Botswana, and Nepal; regional institutes’ representatives from KEMRI Welcome

May 16 2022

ISPI Forum on Digital Transformation, WPF speaker

The Italian Institute for International Political Studies (ISPI) will be holding a High Level Forum on Digital Transformation in connection with OECD. The event will be held 16 May 2022 in hybrid format. WPF will be speaking about what risks exists for consumers arising from illicit use of their personal data, and also approaches for

May 11 2022

OECD Going Digital Horizontal Project: news and event

WPF’s Executive Director Pam Dixon will be presenting at an upcoming OECD Workshop on the topic of data stewardship, access, sharing, and control in regards to national data strategies. WPF will be speaking as a organizational member of the formal civil society stakeholder group at OECD (CSISAC). The topic of digitalization is one that OECD

Apr 27 2022

The neglected intersection between poverty and privacy in the United States

WPF is pleased to announce a new project examining the intersection between poverty and privacy in the United States. In the United States, the prevailing discussions about privacy rarely contemplate the poor, or how — or where — the poor or financially stressed may experience privacy challenges. This is also true of many legislative discussions regarding data governance, data protection, and privacy; there is generally not routine scrutiny of the intersection and impacts of proposed statutory language or approaches regarding those who live at or below the poverty level.

National IDs Around the World — Interactive map

About this Data Visualization: This interactive map displays the presence...
Report: From the Filing Cabinet to the Cloud: Updating the Privacy Act of 1974

This comprehensive report and proposed bill text is focused on the Privacy Act of 1974, an important and early Federal privacy law that applies to the government sector and some contractors. The Privacy Act was written for the 1970s information era -- an era that was characterized by the use of mainframe computers and filing cabinets. Today's digital information era looks much different than the '70s: smart phones are smarter than the old mainframes, and documents are now routinely digitized and stored and perhaps even analyzed in the cloud, among many other changes. The report focuses on why the Privacy Act needs an update that will bring it into this century, and how that could look and work. This work was written by Robert Gellman, and informed by a two-year multi-stakeholder process.
COVID-19 and HIPAA: HHS’s Troubled Approach to Waiving Privacy and Security Rules for the Pandemic

The COVID-19 pandemic strained the U.S. health ecosystem in numerous ways, including putting pressure on the HIPAA privacy and security rules. The Department of Health and Human Services adjusted the privacy and security rules for the pandemic through the use of statutory and administrative HIPAA waivers. While some of the adjustments are appropriate for the emergency circumstances, there are also some meaningful and potentially unwelcome privacy and security consequences. At an appropriate time, the use of HIPAA waivers as a response to health care emergencies needs a thorough review. This report sets out the facts, identifies the issues, and proposes a roadmap for change.