The digital age manifestation of this tension is apparent very clearly in the medical field involving human subjects. On the one hand there is the ethical and legal obligation to protect the privacy, security and dignity of human subjects. But on the other hand, there is an increasing realization that accessing vast amounts of information with the help of today’s computing power can unearth insights that are otherwise not possible.
Stymied by legal hurdles and requirements, and confounded by complex ethical considerations, researchers and clinicians are prevented from sharing and accessing quality and timely information that could be instrumental in diagnosing and finding cures to stubborn or even newly discovered diseases. In the United States itself, by one measure, there are upward of 2000 separate local, state and federal privacy-related legislations and requirements that govern the packaging, storage and publication of patient information. Guaranteeing unconditional and unstinting privacy is not only tremendously expensive and mostly futile, as 100% privacy is very likely impossible, it also makes sharing and accessing information for legitimate and laudable purposes greatly onerous. On the other hand, veer toward easy sharing and access, and the chances become very high of unauthorized leaks and potentially damaging misuse of information.
For one, we need technological solutions that can balance the needs of privacy with the desire to share information. We also need technical standards for semantic interoperability made possible by detailed and useful metadata. Of course, where applicable, we need to harmonize legal differences to account for differences in regimes. But we also need norms of expectation and behavior girded by both written and unwritten agreements that set the obligations of both the citizen, the source of information, as well as the researcher, the user of information. This aggregate of agreements is what I term as social contracts.