FPF Submits Comments to NIH on the NIH-Wide Strategic Plan for Fiscal Years 2021-2025

Earlier this month, the Future of Privacy Forum (FPF) submitted comments to the National Institutes of Health (NIH) on the NIH-Wide Strategic Plan covering fiscal years 2021-2025. In the letter, Health Policy Counsel Rachele Hendricks-Sturrup and Artificial Intelligence Policy Counsel Sara Jordan propose the addition of a cross-cutting theme to NIH’s strategic plan as well as opportunities for collaboration between the two organizations.

Overall, FPF prompts the NIH to: 

1. Consider “balancing health data privacy with data access and use” as an additional cross-cutting theme. By adding this additional cross-cutting theme, a balance might be achieved between the NIH’s drive to advance health and preserving the privacy of individuals who offer their data for the development of new medical procedures, products, pharmaceuticals, and devices.
2. Support research resources and infrastructure with ethical review models. In particular, the NIH should consider adopting or working with FPF to refine our ethical review tools, which could help the NIH identify, consider, and mitigate privacy risks raised by the terms of use and re-use of data held in the NIH repositories; and
3. Foster a culture of good scientific stewardship around consent to data use. Consent may be an appropriate mechanism for protecting the privacy and data rights of research participants in many cases, but not in all cases, especially given that health data is no longer exclusively generated or processed by health care providers and insurers.

Read the Full Letter