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Submission Type

Commentary/Editorial

Keywords

Participant governance, health information technology, patient involvement, privacy

Abstract

Introduction: Individuals have a moral claim to be involved in the governance of their personal data. Individuals’ rights include privacy, autonomy, and the ability to choose for themselves how they want to manage risk, consistent with their own personal values and life situations. The Fair Information Practices principles (FIPPs) offer a framework for governance. Privacy-enhancing technology that complies with applicable law and FIPPs offers a dynamic governance tool for enabling the fair and open use of individual’s personal data.

Perceptions of Risk: Any governance model must protect against the risks posed by data misuse. Individual perceptions of risks are a subjective function involving individuals’ values toward self, family, and society, their perceptions of trust, and their cognitive decision-making skills.

The HIPAA Privacy Rule Puts Some Governance in the Hands of Individuals: Individual privacy protections and individuals’ right to choose are codified in the HIPAA Privacy Rule, which attempts to strike a balance between the dual goals of information flow and privacy protection. The choices most commonly given individuals regarding the use of their health information are binary (“yes” or “no”) and immutable. Recent federal recommendations and law recognize the need for granular, dynamic choices.

Building a Governance Framework Based in Trust: Avoiding Surprises: Individuals expect that they will govern the use of their own health and genomic data. Failure to build and maintain individuals’ trust increases the likelihood that they will refuse to grant permission to access or use their data. The “no surprises principle” asserts that an individual’s personal information should never be collected, used, transmitted, or disclosed in a way that would surprise the individual were she to learn about it.

Fair Information Practices Principles: The FIPPs provide a powerful framework for enabling data sharing and use, while maintaining trust. We introduce the eight FIPPs adopted by the Department of Health and Human Services, and provide examples of their interpretation and implementation.

Reducing Risk through Consumer Engagement: Privacy risk and health risk can be reduced by giving consumers control, autonomy, and transparency, and by engaging them in managing their own health. Explicit “consent” may not always be necessary – the FIPPs offer multiple ways to engender trust and avoid surprises. Platform for Engaging Everyone Responsibly (PEER) We describe the Platform for Engaging Everyone Responsibly (PEER), a technology solution that enables individuals to govern the access to and use of their health information, within an environment that espouses the FIPPs and “no surprises.”

Conclusion: Fair and effective governance recognizes the individual’s moral claim to maintain control over the contribution and use of their health and genomic information. Maintaining individuals’ trust in an environment of transparency is essential to assuring continuing access to their data for safe and effective health care and biomedical knowledge advancement.

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

DOI

10.13063/2327-9214.1207

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