Re: Registry comment

["E. Jack Savely" <mats@xxxxxxxxxxxx>]

At 23:24 10/13/96 -0400, Rita Weeks wrote:
>Now that several of you have commented about your distrust of government
>agencies and privacy invasion with regard to the Registry of PD patients in
>NE.............please check your original copies of the Udall Bill.  I think
>you will find that one of the mandates of the original bill included a
>Registry of PD patients at the national level.
>


        I agree with Rita. However, I too am from the midcontinent State
        of Kansas where we are perhaps somewhat naive.

        I don't see how we can expect to obtain help from a government
        that we cannot trust. All of us were disappointed that the Udall
        bill didn't get passed this year but most of us are going to try
        to get it going early in 1997. If we can't trust the government
        entities with our name, address, age and SSN then we need to
        forget about drivers licenses, home ownership, voting privileges
        and Yes, the Udall bill passage.

        In my opinion, Rita's comments were right on the mark.

        If the registry can help rid us of Parkinson's Disease by providing
        solid evidence for research projects, I'm willing to submit all
        the data necessary to make it happen. I just can't imagine worrying
        about the government doing something bad with my name or SSN. What
        the government COULD do, relative to that which Parkinson's WILL do,
        is a like comparing a flea to an elephant.

        I thought I was a pessimist but now conclude I am a cockeyed
        optimist.

        Good work in NE, Rita!

        ......Jack