In what will likely be source material for somebody’s brief in the Myriad Genetics case over BRAC gene testing, the journal Genetics in Medicine has published an article about the effect of patents and licensing on access to genetic testing (H/T The Scientist). The authors, all researchers at Duke University, examined genetic tests for Tay-Sachs and Canavan diseases. The comparison of these two diseases is useful because genetic testing matters for diagnosis for one disease (Canavan) and not the other. It’s also a good comparison because the diseases have significant overlap in terms of who usually contracts them.
The researchers concluded that because patient advocates connected with Canavan’s disease were able to control access to the testing – via a lawsuit – and keep the cost of the tests lower than anticipated, that an access problem was avoided. Ultimately, in their minds,
“patents matter, but they are tools, not ends in themselves. How they are used matters as much or more than whether they exist at all.”
Whether the courts in the Myriad case approach the issue the same way, and what that means for the case, remains to be seen.