To who does genetic information belong, the individual or the family? Is this information private or collective? Can genes and their functions even participate in any ownership debates?
Surprisingly, The U.S. Patent and Trademark Office has granted thousands of patents on human genes – in fact, about 20 percent of our genes are patented. A gene patent holder has the right to prevent anyone from studying, testing or even looking at a gene.
In the U.S. Myriad has the patent on the BRCA (1 and 2) gene, and is the only address available for those wishing to test for a mutation. Once a test has been done, who owns the results? At the moment Myriad still follows the ethical code of leaving it to the carrier to decide whether to tell.
But could Myriad one day decide to use this information as its own? As the patent holder for the gene could it use the test results for personal marketing and contact all of the carrier’s family members with special offers on the $3,000 BRACAnalysis® tests?
As disturbing as Myriad’s ownership of BRCA is, there is something interesting in taking this issue out of the family sphere and into commerce. Could companies taking over actually free the family from difficult disclosure dilemmas? Could they be used to take the role of the “villain” uniting the family against a common enemy rather than directing blame at each other? And can I sue Myriad if my BRCA gene is defected?
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