A public database is necessary to help effectively diagnose mutations in genes and prevent cancer from developing in patients. Dr. Robert L. Nussbaum, chief of the division of genomic medicine at the University of California, is one of the genetic researchers leading the movement to collect all of Myriad's data. Dr. Nussbaum has collected the information on over 1,000 mutations so far, yet he estimates this to only be about 1.5% of the total data in Myriad's database. Dr. Nussbaum offers incentives for clinics to send in their Myriad reports, such as small amounts of money for each variant, or an iPad mini for over 200 variants. The project will take a long time, but progress towards a public database is being made every day. The hope that Myriad Genetics will give in and make their information available to the public is something that will continue to drive researchers like Dr. Nussbaum.
Saturday, April 13, 2013
Project Hopes to Make Company's Gene Database Public
Myriad Genetics, a molecular diagnostic company, owns the largest database in existance that tells the meaning of particular mutations in genes. An article in the New York Times, describes how some genetics researchers have started a project to collect all of the available Myriad data and make it public. The data is currently in the hands of doctors and patients across the globe, and the organizer's of the Myriad project need their help to amass the data. Myriad previously allowed its data to be viewed online by researchers until 2004, when the company discovered their data was being used by other doctors to diagnose patients.
A public database is necessary to help effectively diagnose mutations in genes and prevent cancer from developing in patients. Dr. Robert L. Nussbaum, chief of the division of genomic medicine at the University of California, is one of the genetic researchers leading the movement to collect all of Myriad's data. Dr. Nussbaum has collected the information on over 1,000 mutations so far, yet he estimates this to only be about 1.5% of the total data in Myriad's database. Dr. Nussbaum offers incentives for clinics to send in their Myriad reports, such as small amounts of money for each variant, or an iPad mini for over 200 variants. The project will take a long time, but progress towards a public database is being made every day. The hope that Myriad Genetics will give in and make their information available to the public is something that will continue to drive researchers like Dr. Nussbaum.
A public database is necessary to help effectively diagnose mutations in genes and prevent cancer from developing in patients. Dr. Robert L. Nussbaum, chief of the division of genomic medicine at the University of California, is one of the genetic researchers leading the movement to collect all of Myriad's data. Dr. Nussbaum has collected the information on over 1,000 mutations so far, yet he estimates this to only be about 1.5% of the total data in Myriad's database. Dr. Nussbaum offers incentives for clinics to send in their Myriad reports, such as small amounts of money for each variant, or an iPad mini for over 200 variants. The project will take a long time, but progress towards a public database is being made every day. The hope that Myriad Genetics will give in and make their information available to the public is something that will continue to drive researchers like Dr. Nussbaum.
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While I understand Myriad's financial stance stance, this data could be extremely beneficial in the medical world and make diagnosing the mutated genes. Preventing any kind of cancer exceeds any kind of financial benefit that can be gained from it. Still I feel that the government or some other organization should reward Myriad for their work instead of just stealing their work, which Nussbaum kind of is doing.
ReplyDeleteMy first thought is if this is legal. If Myriad pulled the data offline, this tells me that they have some ownership over it & clearly are not a fan with putting it online. By having a third party put its data online, it makes me wonder if they have Myriad's permission (probably not) and/or if Myriad will sue them (I think so). On the flip side, if these genes or data aren't patented (and I got a feeling they might not be patented), I don't think there is much legal discourse that Myriad could do. After all, this 'rebellion-database' is created from actual reports.
ReplyDeleteI'm also worried that if that this could discourage future research, if other research companies look at this and think on how they might not be able to profit off their research ideas due to the actions of Dr. Nussbaum and so forth. I'm hoping a happy compromise can be made between the two parties so everybody can make money but also get access to the data in a reasonable manner.