Hi Paula,

I also am advocating against private research but have my advocation centered on DNA. Patients are signing away their right to know their DNA information to private companies when participating in research. There is absolutely no rational reason why the patients cannot be told this very personal information to make better decisions about their health care.

If a patient knows his DNA mutation, he can focus on researching for research or participate in research specifically focused on his or her known mutation. I can understand a patient not being told until after a study whether he has received a experimental drug or placebo. When information is collected by taking blood samples from patients, then forcing the patient to sign away the right to personal information, then in turn make a profit of off the DNA string by copyrighting it and forcing other researchers to purchace the right to study the DNA for other diseases is wrong. Small research companies will not be able to afford the cost for the right to study the DNA which could apply to other neurological disorders.

The blood drawn is no more than information. The private company simply puts the information into a easily accessed form using a computer and then makes a hefty profit from information that cost them nothing to collect. The least they can do is allow the patient to know the results of his blood draw. It will not change the result of the study, and will only help the patient.

Private Research Companies are most definitely taking advantage of the patients.

Vicky