[tri-med] Re: Can you help?

----- Original Message ----- 
From: "Glenn Hardy"
> it was not necessarily put there for parents but for professionals
> looking for info as `10 years ago the internet was not something that
> every lay person had access to.

Actually Susan you have probably hit the nail on the head. The internet was
a concept thought of back in the 60's (yes THAT long ago) and was developed
by universities, mainly within the US as a way of networking between
facilities. The first international network was between the UK and the US.

But back specifically to that web page.......

I had a look at the web page in the internet archives (did you know that if
you know the URL of a web page you can go back and look at old pages, as far
back as 1996, archived on the internet) and also did a little research.

That particular page has been up since 1998 and was last updated in late
1999. I know its been up longer than that though, because it was one of the
first pages I saw when I got on the net in 1996, and as I said a part of the
reason for starting the list (which was done in 1997) and a BIG reason for
the list web site (actually its scary to think I have been hanging out in
cyberspace THAT long!!!) it was probably at a different URL. I could check -
but it would take me a while to search old archives on disk here. (do you
know how many gigs of archives there are for these lists!!)

That page actually belongs to the home page of a book - Medical Genetics -
of which John Carey was/is an author.

I dare say thats the reason that the web site hasn't been updated. The
promotion is for the second edition of the book - and there is now a third
edition. The second edition is out of print so that web page is "obsolete".

Soooooooo as wary as I am of the benefits to all in doing this it may
actually pay to compare the two books (I haven't seen the new edition) as it
ALWAYS pays to do your research before you launch a campaign.

Then speak to the Utah SOFT folk (Debbie and Raquel) and write a snail mail
letter to the University pointing out that the web SITE (not that page but
the whole site) for the second edition of Medical Genetics either needs
updating, or removing. A hint - be nice and offer suggestions of updating or
removing don't demand) - remember the authors earn money and reputation from
the sale of their books as does the University.

I would also cc the letter to ALL the editors, not just John and make sure
that you inlcude who you have cc'ed the letter to in each letter. (that
often brings pressure to bear in itself if people know that collegues are
getting the same letter)

I would also suggest that they look at the comments made by purchasers of
the book at places like Amazon.com. Comments such as
"This book is extremely limited in discussing how these genetic disorders
manifest themselves clinically. I would not recommend this book for students
who plan to apply their knowledge in the clinical setting. Explanations of
certain genetic terms are not always clearly defined nor are certain
biologic processes such as meiosis. Overall, a poorly written book for
anyone but a graduate student of genetics."

and that comments such as this one (also from Amazon)

"This book was intended to prepare medical students to understand the basic
science principles that form the foundation of clinical genetics. It is not
intended to be a clinical handbook. It does an excellent job showing how the
clinical genetic diseases illustrate the scientific principles of genetics.
I think that it is very well written, and forms a foundation to pursue more
clinical studies."

would be beneficially added to every PAGE of any future revisions of the web
site because parents and other non-professional people accessing the
individual pages of the web site would not be aware that the photographs
were designed to be of benefit to students doing further research, and
unrealistically expect all children with the disorder to be like those in
the photograph rather then varying ends of a spectrum.

If it were me (and its not) I might also add information (very tactfully)
about how such photos without adequate explanation (eg the photo which
upsets everyone) facilitate misconceptions of the population effected by the
disorder and that such misconceptions MAY translate into internet games such
as chromosomethingy.

If you havent seen or heard about Chromosomthingy let me know. I still have
web shots of that horrific game which thanks to this list, its members and
everyones connections within the disability community has been removed from
the net.

Anyway - thats a few thoughts from me about how I would approach the
situation if I had the time :-)) but right now I am going back to my sick
bed cause my body hurts bad.

The roots of true achievement lie in the will to become the best that you
can become.
-- Harold Taylor

Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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