Thursday, December 25, 2014

Who Owns Your Genes?

Our genes make us who we are. They contain the instructions that tell every cell in our bodies what to do. Many people think that we should own the right to use our own genetic information without restriction. However, the reality is not so simple. Scientists have been hard at work over the past 20 years trying to decipher the code in our genes. This has led to important breakthroughs in identifying the genes that cause several inherited diseases, including the BRCA gene. This, in turn, has led to tests that can spot people who are susceptible, like Genea Girard, so they can seek treatment before it is too late.
Companies that invest in this work feel that they should own the information that they discover. They argue that without this reward, they could not afford to commit the resources needed to make these discoveries. Needless to say, many patients feel otherwise.

Who Owns Your Genes?

By guest blogger Robert Field:

Genea Girard tested positive for the BRCA gene, which increases the risk of getting breast and ovarian cancer. When she sought a second opinion, she was surprised to learn that no one could give her one, because the gene is patented. The company that holds the patent, Myriad Genetics, administers the test and limits its use by anyone else. She is now a plaintiff in a lawsuit against Myriad that may determine the future of genetic patents.

Our genes make us who we are. They contain the instructions that tell every cell in our bodies what to do. Many people think that we should own the right to use our own genetic information without restriction. However, the reality is not so simple.

Scientists have been hard at work over the past 20 years trying to decipher the code in our genes. This has led to important breakthroughs in identifying the genes that cause several inherited diseases, including the BRCA gene. This, in turn, has led to tests that can spot people who are susceptible, like Genea Girard, so they can seek treatment before it is too late.

Companies that invest in this work feel that they should own the information that they discover. They argue that without this reward, they could not afford to commit the resources needed to make these discoveries. Needless to say, many patients feel otherwise.

Ownership of genetic information in the form of a patent prevents anyone but the patent holder from making or using it. However, the law is still unsettled as to whether genes can, in fact, be patented. While many gene patents have been issued, the Supreme Court has yet to rule on whether they are valid. In other words, it is still unclear who has the right to own your genes.

Earlier this year, a federal court in Brooklyn ruled in Genae’s favor in her lawsuit and struck down the patent on the BRCA gene. In doing so, the judge found that all patents on genes are invalid because they apply to information about nature rather than to original discoveries. The case has been appealed and is expected to make it to the Supreme Court, so the issue of who can own our genes may finally be resolved.

Do patents on genes encourage innovation by rewarding companies that invest in research, or hurt innovation by locking up discoveries from the free market? History suggests that science advances best when information is exchanged freely and ideas can spread widely. Investments in innovation should be rewarded, but locking up medical knowledge seems like a dangerous way to do it. Patents should be reserved for actual inventions. Our genes should be our own.

Find earlier items by Robert Field here, including this examinaiton of the legal challenges of the Affordable Care Act (Obamacare).

To check out more Check Up items go to www.philly.com/checkup.

About this blog

Check Up covers regional health news and a wide array of healthcare topics from pharmaceutical happenings to patient safety. Read about some of our bloggers here.

Portions of this blog may also be found in the Inquirer's Sunday Health Section.

Robert I. Field, Ph.D., J.D., M.P.H. Professor, School of Law & Drexel School of Public Health
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