Should DNA Data Belong to Private Companies? The Genetic Alliance Fights For Open Access

Imagine you’re feeling ill. You go to visit the doctor. He runs some tests. He phones you a few days later. You expect a diagnosis, along with some sort of advice for treatment. If you just have the flu, then this is fine. But it's not fine. Your illness is something far more serious: A genetic disorder that could impact you for the rest of your life. Perhaps doctor has a file of your genome. Your doctor sequenced it, isolating the places where he recognizes a disorder. But he doesn’t hand this information over to you. He even refuses to share his research into potential treatments.

After her two children were diagnosed with a rare genetic disorder, Sharon Terry became frustrated with the communication of research.  She wanted her own copy of her children’s sequences to compare them with current research, but the doctor running the tests would not comply. When this happened to Terry, she fought back. She founded Genetic Alliance, a nonprofit health advocacy organization. It's website Geneticalliance.org allows patients and medical researchers to share genetic sequences and suggest treatments for genetic disorders. Terry believes that our DNA does not belong to the scientists running tests and using it for their own scientific projects. It belongs to us.

The debate over who owns your DNA is only one facet of an ongoing controversy about the privatization of science. While many projects are publicly funded, research typically takes place behind closed doors. Data remains a secret. Analysis is often published in a small number of highbrow, industry journals. Results may take years to reach the average citizen. Movements like Terry's to make science less expensive and more accessible are pushing back.

As genetic analysis becomes cheaper and more widespread, a number of ethical issues arise. Pages of data on nucleic acids don’t mean much in the hands of the average American. But at the same time, those nucleic acids—subunits of a much larger genome—are the personal property of that individual. They're like test results from the SAT, or your car’s emission exams. Why shouldn’t you be allowed to access a blueprint of your own genome? 

This problem is particularly important if your genome is being sequenced for a potentially lethal disorder. Creating a public library for genetics—democratizing the information sharing process—seems like a completely reasonable solution. In her video on the Genetic Alliance website, Terry compares the movement to iTunes, which revolutionized the music industry. Individuals could look for treatments to their own disorders using the public database. Additionally, they could use the structure of their own genome to select a treatment that worked for someone with a similar DNA structure.

The problem with this public sharing is liability. A doctor’s treatments have been clinically tested and researched for years. Searching the genetic banks on the internet may lead to half-finished projects, or papers with small sample sizes. The legitimacy of a paper is difficult to judge without some formal training in the sciences. Physicians fear that patients may begin taking a supplement or diagnosing themselves without alerting them first, or considering the potential side-effects.

Today there’s no simple way to compare an individual’s genetic data with current lab results of a particular disorder. That's because the definition of what is “current” in science is a bit fuzzy. Is a current result one that has been formally published in a journal before submission to the online database? Or is it the most recent results from a lab? Is it a dataset that has not yet been reviewed by others? Take, for example, the after-hours experiment from Anthony Holland and Jonathan Brody, who tried to target and kill cancerous cells using specific sound frequencies on a machine built by Holland. The project shows promise, but by pharmaceutical standards, it is nowhere near ready for use as a treatment. If public sites like Genetic Alliance become more popular, this experiment could be at the elite end of the spectrum featured on the webpage. 

Genetic Alliance offers an opportunity to involve the public in medical research. It could inspire donations, foster support and generate a host of other effects that we can’t predict just yet. But in our letigious environment, a misdiagnosis could trigger a lawsuit. Liability issues pose steep restrictions on the use of medical information. Publicizing genetic and research results, therefore, will force users to take responsibility for their own medical choices. This isn’t familiar territory for the U.S. legal or medical community.

Carl Zimmer wrote a piece in the New York Times about the potential to use bacteria to treat illness. Bacteria from a patient’s nose, that is. According to Zimmer, just because your nose provides the ideal environment to harvest a million-dollar cure, there’s no clause stating that you would deserve a portion of the profits. The entire question reads like a present day Gattaca. Who does your DNA belong to? It seems it won’t be long before someone would scarcely need your permission to sequence your genome. It could come from a hair, a fingernail, or even feces. Publicizing genetic research might seem to be a logical way out of the Gattica problem, but we need to be wary of how we use that information, and the judgments that can form when one reveals something as personal as a genome. No one can be fully certain of what secrets are concealed in each sequence, in each genome.

Photo Credit: Wikimedia Commons