Quote:
Originally Posted by vlhperry
The problem I have with the release of the information is not the fact that it is my personal information, but information gathered from patients with the same gene mutation, gathered by their consent, then sold to a private company to earn income from and they can sell it to another private company to earn income from. I do not fear for my personel information, but then I am naive as I believed them, when I was told my genetic material would be assigned a number and would be untracable to me.
My requesting the information to be open and shared to any research company to be used was to prevent companies from buying a patent to certain genetic lines, preventing the information that was bought from being used for other illnesses. One mutation line may effect other genetic processes as well. Rather than speed the process up for all, it will start a series of lawsuits by companies, and prevent the growth of smaller pharma companies who will not have access to genetic mutations to continue their work.
The government NIH genitics grant program is like a drug cartel using their power to decide who the big players are and who are not.
|
Vicky,
I believe that genetics really will eventually be the driving force in developing novel drug therapies, so the ethical questions that you raise are very sobering and certainly we should all educate ourselves on. I recall feeling a little wary when reading the fine print on 23andme- they were very clear on the fact that the info they collected may not always stay anonymous.
This is a brave new world, and we really do need to be aware of where our information ultimatelly ends up. Based on what you are saying, you participated in genetic research with the understanding that it would be pooled together as sort of one large research base for many potential researchers or pharmas to build on? In reality, then you think that our genetic information will be sold and held by bigger pharma thus creating a monopoly? Is there any oversight on this through regulation or trade laws?
Thanks for bringing to light the business side of it all. I always find it difficult that my health is nothing more than a commodity.
Laura