Rethinking Privacy: Data Stewardship

Data Stewardship is a holistic approach to data capture and retention. It recognizes that individual data is actually owned by the individual and that others granted access to it have responsibilities to those individuals to manage it on their behalf and in their interest. As data analysis grows more robust this is especially important because individuals may lack self-awareness of their own patterns. Data Stewardship embraces three main elements:

· The direct responsibility to users regarding a data steward’s access and use of the data.

· The secondary responsibility to users regarding access and use of the data by third parties. How does it protect data and its user’s rights once it relinquishes direct control and access of information to third parties?

· The tertiary responsibility is to the data itself. How does the provider protect the data it holds? Does it disclose risk to users? Does it encrypt data?

Let me illustrate this idea in a practical setting. Recently I visited some of my relatives who are very passionate about genealogy. At one point our conversation turned to the subject of tracing ancestry through genetics. I learned that at least four companies perform genetic analysis for customers who send in a genetic sample, a DNA swab not unlike those you might see in a police procedural. They then waxed on about all the cool things you could discover like what parts of the world you come from in the distant past. They enthused over browser plugins that let users share and compare genetic data with other like-minded users.

This was alarming. Further research yielded this Terms of Service quote from the website of one of the providers:

“What happens if you do NOT consent to <Company A> Research?

If you do not complete a Consent Document or any additional consent agreement with <Company A>, your information will not be shared or used for <Company A> Research. However, your Genetic Information and Self-Reported Information may still be used by us and shared with our third-party service providers to provide and improve our Services (as described in Section 2.a and 2.b, above), and shared as Aggregate Information that does not identify you as an individual (as described in Section 2.c, above).”

There is no responsibility to the user in this statement. Users have all kinds of reasons for obtaining and sharing information. In this case, earnest genealogists have a desire to connect to their genetic heritage and to others who might share that interest. It is doubtful that many users understand that the sample they provide while accommodating those research ends, also provide the raw information for a full range of genetic testing. Moreover, it is doubtful that the company knows or has much control over data that it is providing to third parties in the name of providing and improving services.

The degree to which the data is protected is questionable. The service provider should be taking great care of the genetic data it gleans from its customers. However, it is unclear how this is actually accomplished. Terms of Use are somewhat ambiguous about the limits of its authority over the information so shared.

Genealogy companies are not healthcare companies and are not covered by regulations like HIPPA though they are affected by other regulations dealing specifically with genetic information. Company A above notes in its security description that it employs SSL, but that is the sole technological reference. Elsewhere it notes that the genetic data it holds may be stored in other countries under different legal regimes. In light of the Snowden revelations, this sounds like an open invitation for individual genetic data to be hacked and stolen by any number of parties including states.

Holders of others’ data need to think of themselves as data stewards and be worthy of trust. Think about the gambling concept of a “tell;” an individual behavior that indicates that they are likely telling the truth or lying. If you’re gambling (competing) with someone with a known tell, you don’t tell them because you want to win. However, if you’re watching a friend play and notice they have a tell, you tell them because you don’t want them to be disadvantaged. Now consider a novice player sitting down to play poker with a group of card sharps. They pick up the tell quickly and milk the novice player for as much as they can get away with while not revealing their advantage. Data analysis provides tells. Sharing data with third parties sets the table for the individual user to be taken advantage of.

Data Stewards need to act in the interests of those individuals whose data it holds in trust rather than be one of the many seeking to take advantage of new players who may not even realize that they are sitting down at a table to play a game. At present, holders of data are for the most part, just another shark looking for an easy score. Data holders court disaster when they betray user trust.