Can a personal genome sequence get a creative commons license?

The short answer is no. There is a long essay waiting to be written here. But for now, I can say that the reason it will not work is because there is no clear legal foundation to build a license on top of when it comes to sequence data. Creative Commons licenses have copyright to build on. Material Transfer Agreements (MTAs) have good old fashioned property law to build on (turns out important things still exist outside of the bitsphere). A personal genome sequence is, well, just bits. (Update: Or lifebits? I love the term)

If we could, why might a CC-like license for personal genome sequences be useful to an individual? A CC-like license might reduce transaction costs associated with giving permission to use a genome sequence for specific pre-approved purposes. My sequence is more or less useless to the scientific community if I require each and every scientist to ask permission to use my data. At the same time, I may not want to give blanket permission to the entire research community to use my data for all purposes. What about research that I find ethically or morally objectionable? A person might want to reserve some rights in these situations, but they might also want to give blanket permission for research on cancer for example. An efficient compromise might be for me to use a CC-like license to pre-approve the use of my sequence data for some purposes, but not for others. There might be other conditions I would want to place on the use of data. For example, I might require all researchers who use my data to publish in OA journals (kind of like the CC share-alike clause).

The emergence of creative commons licenses was motivated in part to provide a mechanism to offset copyright protections that are too protective in some situations. Copyright is granted to content producers automatically, it just sort of falls out of the sky the moment a pen is lifted from paper (or a cocktail napkin or matchbook or whatever the medium). By default, everyone gets “all rights reserved” whether or not they really want all those rights. With CC licenses, a person can explicitly give up some of those automatic rights while maintaining others. This can reduce the transaction costs between content producers and consumers to zero and allow information to flow more freely, while still being able to reserve some rights.

I think this type of control is important for personal health information, but its unclear to me whether there is a legal leg to build it on. It might be possible to develop something similar in spirit to a CC-license via privacy waivers, since the bits representing a human genome sequence might be considered Protected Health Information (PHI) via HIPAA.

License or no license, its easy to overlook the fact that bits in general are unruly and tend to reproduce like rabbits, as Jeff Jonas recently pointed out with this quiz::

Care to guess how many copies of the data [about you] are out there now?

* No copies You better hope not
* >10 copies Almost certainly
* >100 copies Very likely
* >1,000 copies Quite possible is certain settings
* >100,000 copies Sometimes
* >1,000,000 copies Not out of the question

I’m reluctant to believe that sharing the bits representing my genome sequence or my medical data is an all or nothing situation. I would like to think that some fine-grained control is really possible. “All rights reserved” is too much protection. Sending the bits out into the world with no license at all feels like too little protection.

CC licenses emerged because copyright was overprotective of rights in some circumstances and created transaction costs that were unnecessarily high. CC-like licenses for personal genome sequences (or other health data) might be nice in order to introduce some friction in areas where bits would otherwise run free, while keeping transaction costs low or zero for pre-approved uses. Its not clear there is a legal framework to build such licenses though. Ideas?

For more discussion on data licenses, there is a good discussion happening elsewhere via Deepak Singh, David Wiley, and Peter Murray-Rust.


2 Responses to “Can a personal genome sequence get a creative commons license?”

  1. Trackbacks on March 23rd, 2019 9:25 am

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