Showing posts with label genetic privacy. Show all posts
Showing posts with label genetic privacy. Show all posts
Tuesday, January 3, 2012
The Question of Digital Human Rights
The issues of personal data autonomy need to be addressed for personalized medicine to succeed.
Monday, March 8, 2010
Government Subsidy of the Genetic Information Marketplace
One of the more recent major government investments in the genetic information marketplace is the $25 million grant awarded to Kaiser and UCSF http://bit.ly/735YKt . In this model individuals altruistically donate their DNA to Kaiser and have it mined with their medical records. As a non-profit with an excellent reputation for providing quality care... Kaiser is a good steward for this type of study. However, as far as I can tell, Kaiser and UCSF appear to have all rights to monetize the data with no information transparency to either participants or researchers outside of Kaiser and UCSF.
In our current genetic information marketplace US taxpayers pay for genetic research with often private entities retaining most all the economic rights associated with the data. This model has its place as a form of government subsidy of industry … but do we really want this to be the dominant genetic research model moving forward? What the heck… why not have the government subsidize direct to consumer genome services instead? Then patient advocacy groups could organize around populations to facilitate genetic research and the “patents” around genetic interpretation could then be owned in part by those non-profits which serve the population most impacted by a particular disease. Wouldn’t this model result in lower overall costs for both personal genetic information and health care in the long run? Another model would be for consumers to pay upfront for their raw genetic data, manage it separate from their medical records and be compensated for sharing in the risks associated with developing genetic research http://www.dnaguide.com , http://www.dnaclassifieds.com . Such a model might seem out of control but in fact it’s more consistent with an actual genetic information marketplace.Perhaps all the arm waving regarding direct to consumer genetic testing has more to do with the fight over how genetic information will be subsidized and monetized rather than genuine concern over actually protecting consumers and their genetic information. Alice RathjenCEO, Founder DNA Guide and DNA Classifieds
Posted via web from DNA Guide
Sunday, November 22, 2009
Technology Regulating Genetic Privacy
How can genetic privacy be regulated?
The answer is fairly easily! Genetic data is by its very nature unique code – making it possible to identify and remove from any database.
Entities that store genetic data within the US should probably just plan on eventually being audited, at some point, to prove their genetic data storage is authorized.
It's also just a matter of time before educated consumers will demand that entities storing their genetic data agree to third party audits (for security and authorized use) prior to allowing their genetic information to be stored. I can imagine consumers requiring they retain the right to remove any and all of their genetic data from any entity.
Consumers will also likely want the right to revoke consent to the use of their genetic data since the interpretation of genetic data is subject to change (and markers currently not considered to be sensitive information may become so in the future).
The process of performing audits could easily be done based on a unique user account “token” created from various combinations of values within each individuals DNA sample. Such DNA tokens could exist in a variety of versions for each individual – some linked to their medical information … other’s stripped of all identifying information (containing only enough DNA to identify their sample along with specific instructions regarding authorized use).
Are there any lawyers out there working on this stuff? The software for managing genetic data is well on its way http://www.dnaguide.com
Alice Rathjen
DNA Guide http://www.dnaguide.com
DNA Classifieds http://www.dnaclassifieds.com
The answer is fairly easily! Genetic data is by its very nature unique code – making it possible to identify and remove from any database.
Entities that store genetic data within the US should probably just plan on eventually being audited, at some point, to prove their genetic data storage is authorized.
It's also just a matter of time before educated consumers will demand that entities storing their genetic data agree to third party audits (for security and authorized use) prior to allowing their genetic information to be stored. I can imagine consumers requiring they retain the right to remove any and all of their genetic data from any entity.
Consumers will also likely want the right to revoke consent to the use of their genetic data since the interpretation of genetic data is subject to change (and markers currently not considered to be sensitive information may become so in the future).
The process of performing audits could easily be done based on a unique user account “token” created from various combinations of values within each individuals DNA sample. Such DNA tokens could exist in a variety of versions for each individual – some linked to their medical information … other’s stripped of all identifying information (containing only enough DNA to identify their sample along with specific instructions regarding authorized use).
Are there any lawyers out there working on this stuff? The software for managing genetic data is well on its way http://www.dnaguide.com
Alice Rathjen
DNA Guide http://www.dnaguide.com
DNA Classifieds http://www.dnaclassifieds.com
Government Regulation of Direct to Consumer Genetic Testing
The Privatization of Genetic Data
The US government has done a decent job funding genetic research and creating an infrastructure for scientists to research genomes. Now what’s needed is funding and policy to facilitate the privatization of genetic data.
Current debate on personal genomics has focused heavily on the need to protect consumers from direct to consumer genetic testing companies. Although on the surface this seems a legitimate concern it’s really a secondary debate. The first issue is whether or not the US government will recognize personal genetic information as the private property of the individual. The issues of rights and responsibilities regarding the use, interpretation, and financial gains/losses regarding personal genetic data stem from the initial determination of ownership.
If the US government forces personal genetic data into a person's medical records to “protect” consumers….then they've effectively given away the individuals rights to their DNA to their health provider and insurance company. To say the individuals right to genetic privacy can be negated because of a lack of infrastructure for managing the flow of information regarding the interpretation of personal genetic data is short sighted. Issues of security, methods and processes for assessing the interpretation of genetic data as well as who’s qualified to transmit and receive information can be mitigated. What’s needed is a government investment in public policy and the infrastructure necessary to facilitate the privatization of genetic data. More of what that may look like later….
The government’s primary role is to identify legal ownership of genetic data – and then protect it as private property. Hopefully the privatization of genetic data in the US will results in my genetic data being treated as my private property. Otherwise… I’ll just put my genetic data on a server outside the US.
Good luck to us all.
Alice Rathjen
DNA Guide http://www.dnaguide.com
DNA Classifieds http://www.dnaclassifieds.com
The US government has done a decent job funding genetic research and creating an infrastructure for scientists to research genomes. Now what’s needed is funding and policy to facilitate the privatization of genetic data.
Current debate on personal genomics has focused heavily on the need to protect consumers from direct to consumer genetic testing companies. Although on the surface this seems a legitimate concern it’s really a secondary debate. The first issue is whether or not the US government will recognize personal genetic information as the private property of the individual. The issues of rights and responsibilities regarding the use, interpretation, and financial gains/losses regarding personal genetic data stem from the initial determination of ownership.
If the US government forces personal genetic data into a person's medical records to “protect” consumers….then they've effectively given away the individuals rights to their DNA to their health provider and insurance company. To say the individuals right to genetic privacy can be negated because of a lack of infrastructure for managing the flow of information regarding the interpretation of personal genetic data is short sighted. Issues of security, methods and processes for assessing the interpretation of genetic data as well as who’s qualified to transmit and receive information can be mitigated. What’s needed is a government investment in public policy and the infrastructure necessary to facilitate the privatization of genetic data. More of what that may look like later….
The government’s primary role is to identify legal ownership of genetic data – and then protect it as private property. Hopefully the privatization of genetic data in the US will results in my genetic data being treated as my private property. Otherwise… I’ll just put my genetic data on a server outside the US.
Good luck to us all.
Alice Rathjen
DNA Guide http://www.dnaguide.com
DNA Classifieds http://www.dnaclassifieds.com
Subscribe to:
Posts (Atom)