Privacy, Fairness, and Respect for Individuals
Authors: Baker Dixie B. , Kaye Jane , Terry Sharon F. 
Published: April 2016

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.