by guest columnist Dr David Koepsell
It has been seven years since the US Supreme Court finally weighed in on the issue of gene patents, invalidating the practice so companies could no longer patent unaltered parts of nature. That was a great step in the right direction. But that ruling left a big gaping hole in the law about genetic data, one that commercial testing companies swept into. As a recent 60 Minutes episode exposed, the revenue for most of those testing companies is not primarily in selling tests that tell you and their other 50 million customers a bit about your heritage. Instead, they make most of their money selling aggregated data to the highest bidders: pharmaceutical companies and others doing important, basic research.
Sharing genetic data widely for use in science is essential for the genomic revolution in medicine to become fully realized. We want scientists from all around the world to access as much de-identified data as possible in order to help discover new cures to diseases, treatments for illnesses, and develop drugs that can save millions of lives. We also need it to make the idea of truly personalized medicine a reality so we can cut the costs of health care and treat individuals more appropriately. But the way the consumer genetics companies have been going about it is just wrong. Most of their users are unaware of how their data is used, the frequency or value to the testing companies of their data’s sales, nor who is buying it.
The Henrietta Lacks case, made famous by the Rebecca Skloot book and subsequent movie, makes clear that sometimes people contribute to science in tremendous ways, saving lives through the data or tissues they contribute, but injustice can result when their contributions are significant and their rewards non-existent. The next Henrietta Lacks may have already done a genetic test, and her data may save countless lives, help develop drugs that get multimillion dollar patents, or have hundreds of papers written about her, and she would never know. There are ways to avoid this. Platforms and methods exist that can keep donors of data involved, informed, and even paid for their valuable data. We should be adopting them widely and without question, to cut individuals into the direct profit stream, to help them be aware of the use of their valuable and most personal data, and to make a more equitable and just world where data sharing for science isn’t viewed as opportunistic and exploitive, but rather as a social good where everyone benefits.
There is no legal way to “own” data. The only way to mimic data ownership is by locking it up and not sharing it. But that is harmful to basic science, and the wealth and benefit for everyone in a world where de-identified genetic data is shared widely far outweighs any risks. Unless we create new laws that make us owners of our personal genetic data (which would be unwieldy and not based on any current legal theory about data) we need to adopt technologies, social behaviors, and norms that reward people for contributing to the vital science involved while protecting our values of privacy and autonomy. A number of companies and organizations are involved in creating these tools and norms, and we should, as a society, pressure the data monopolists who have been profiting through the sale of our data to be open to new models, and more equitable business plans built around data sharing and fair compensation.
David Koepsell, J.D./Ph.D.
author of Who Owns You? (Wiley, 2009) And CEO of EncrypGen, Inc.