Lawsuit Filed Over Familial Dysautonomia Genetic Patent

Genetics

By Nadja Spiegelman

Published August 11, 2010, issue of August 20, 2010.
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A lawsuit now working its way through federal court is adding an interesting twist to the heated debate over genetic patenting.

Two scientists from Fordham University are suing Massachusetts General Hospital over a patent on the gene that causes the rare Ashkenazi recessive genetic disorder familial dysautonomia. The two sides are each aligned with groups working to prevent and combat genetic disease in the Jewish community.

The Dysautonomia Foundation, whose board of directors consists primarily of parents of those afflicted with FD, funded the defendants’ research on the gene. It currently holds the license to the patent.

Dor Yeshorim, which provides confidential carrier screening in the Orthodox community, helped fund the plaintiffs’ research on the FD gene. It would presumably gain control over the license to the gene should the plaintiffs win in court.

While neither organization is named as a party to the lawsuit, both say that they want to hold the patent only to ensure freedom of access for those doing carrier testing and research.

“It’s a shame that the parties involved are spending money on legal costs when that money should be spent on funding research and testing,” said David Brenner, the Dysautonomia Foundation’s executive director.

Dor Yeshorim did not respond to requests for comment.

At the heart of this legal battle are two almost simultaneous applications for the genetic patent.

In the late 1990s, Dor Yeshorim, in association with Fordham University, funded the research of Berish Rubin and Sylvia Anderson. At the same time, the Familial Dysautonomia Foundation funded the research of James Gusella and Susan Slaugenhaupt at Massachusetts General Hospital.

In December of 2000, the Fordham researchers submitted an article to The American Journal of Human Genetics that detailed their findings on the gene’s sequence. They included with their manuscript a letter requesting that it not be sent for review to other researchers working in the field, specifically citing Gusella and Slaugenhaupt, among others. According to the plaintiffs, the journal nevertheless sent “the manuscript, or a summary of its critical aspects” to Gusella.

In a court filing, MGH said that Gusella had received, unsolicited, “a document that purported to be an abstract” of the article and that he did not review it. But MGH denied the plaintiffs’ claim that Gusella or his colleagues had incorporated elements from the article into their patent application.

Shortly before the article’s publication in January 2001, Gusella and Anderson applied for a patent on the FD gene. Soon after, Rubin and Anderson filed for the same patent. In 2008, after both claims went through the U.S. Patent and Trademark Office’s lengthy review process, the patent was awarded to MGH and Gusella and Anderson. MGH made the Dysautonomia Foundation the patent’s exclusive licensee.

In January 2009, Rubin and Anderson brought their lawsuit against MGH, claiming that the information in the patent was drawn from their then-unpublished article. A ruling is not expected before 2011.

Lawyers for sides in the case did not respond to requests seeking comment. The scientists involved in the dispute either declined to comment or did not respond to queries.

Currently, the Dysautonomia Foundation does not charge royalties to researchers studying the gene or to nonprofit organizations that wish to conduct carrier testing for the gene, according to Brenner. The foundation does, however, charge a nominal fee to two large commercial companies that provide carrier screening, with the resulting revenue channeled exclusively to FD research, he said.

“Our motivation is to cure our own children, and anybody who can do that, including these researchers at Fordham, we’d be very enthusiastic about them making progress,” Brenner said. “The reason we sought the patent was so that it would always be available to researchers — and to make sure that no other families would go through the same thing we’ve gone through.”

Dor Yeshorim has also maintained that its motives for seeking the patent are not profit-driven. “If Dr. Rubin wins, our organization and he will not charge anything for anyone to use the IP,” Dor Yeshorim spokesman Avrom Eliyahu wrote in a June 25 e-mail to Bloomberg news, using an abbreviation for “intellectual property.” Dor Yeshorim seeks control of the patent “only to stop anyone from charging for its use,” he wrote.

Dor Yeshorim has in the past signaled its opposition to genetic patenting. In a 2004 interview with New Scientist magazine, Dor Yeshorim’s founder and director, Rabbi Josef Ekstein, stated: “Patenting can threaten the entire genetic prevention system. Yes, a small royalty should be paid to companies or individuals who make the discovery. However, patenting can destroy all the advantages made from a discovery, and prevent developments from benefiting mankind.”


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