Crowson MG, Tan JZH, Dunn J, et al. The need to develop health data transaction disclosure requirements to balance transparency, privacy, and progressive use. Lancet Digit Health. 2026;8(2):100947. doi:10.1016/j.landig.2025.100947
This viewpoint examines the growing importance of transparency, accountability, and ethical responsibility in the collection, sharing, and commercialization of health care data. As health data becomes increasingly valuable for advancing patient care, research, and artificial intelligence (AI) development, the viewpoint emphasizes that these benefits must not come at the expense of patient autonomy, privacy, or dignity. The authors highlight concerns surrounding opaque data-sharing practices, particularly the use of default opt-out systems for AI training, which may undermine informed patient consent. Additionally, there are risks associated with biased and unrepresentative datasets, especially in the context of large language models and generative AI. Without the proper clinical and sociodemographic context, health data can be misinterpreted, leading to inequitable outcomes and a decline in public trust. To address these challenges, the authors recommend adaptive recruitment methods, culturally tailored engagement practices, multilingual support systems, and regular dataset audits to improve representation and accountability. The authors also call for standardized reporting frameworks for health data transactions, including clear disclosures about what data is shared, who receives it, and how it may influence patient care or privacy. Transparency measures must also prioritize accessibility by providing information across multiple platforms and languages. Ultimately, transparency, innovation, and privacy protection can coexist if supported by collaborative action. Health care organizations, regulatory agencies, community groups, and policymakers should work together to establish enforceable standards that promote ethical data governance, strengthen public trust, and ensure that advances in health technology benefit all populations fairly and responsibly.