Good grief, it's amazing that the Denver police would even need to be fought over such a thing!

I'm personally thankful to the ACLU for fighting against gene patenting!

I have a rare genetic condition called Pseudoxanthoma Elasticum (PXE), and a power-hungry woman in Massachusetts patented the gene despite doing NOTHING to contribute to it's discovery! Well, "nothing" isn't accurate. She purportedly stole research material from Dr. Berthold Struk when he was a graduate student at Harvard and sent the information to the University of Hawaii (involving a professor who later got in trouble for academic fraud over something else) and got her name attached to their later publication.

She supposedly took the patent to prevent others from doing it, but it was pretty clear that she wanted all PXE researchers to go through her. That became blatantly obvious when the ACLU fought to end all patenting of genes and that woman fought them over it.

She always insisted that her name be attached to their publications too, despite the woman having NO education in science! (She had a theology degree and used to be a nun!)

Maybe now there will be more research since scientists won't have to be "creeped out" dealing with that woman anymore!

They still have Sharon Terry listed as the discoverer.
Her two children have PXE.

There used to be just one major PXE organization in the USA called NAPxE, with Dr. Kenneth Neldner from Texas Tech at the forefront. He's the one who requested blood samples from around the country and had them sent to Harvard to help identify the gene mutation(s) responsible for PXE. Although he was only a graduate student at the time, the person who did most of the painstaking work was Berthold Struk from Germany.

Terry wanted to be in charge of NAPxE but she never won the votes. She eventually founded her own group.

She visited Struk at his Harvard lab and later, about the time that Harvard published their results, researchers at Hawaii (coming out of nowhere) published similar results. Struk accused Terry of stealing data and sending it to them, but I don't think it was ever proven.

Terry never discovered anything herself. She was never a scientist!

Upon getting the patent, which flabbergasted many people, there was a natural tendency for researchers to seek permission from her due to the patent. I don't think money was ever involved, but Terry's name often appeared on their various research papers thereafter.

The most appalling aspect of it all was that she long argued her main reason for seizing the patent was to prevent others from exploiting it for financial reasons. Well, if NOBODY could hold a patent as the ACLU argued, then that wouldn't be a problem. Yet Terry argued against the ACLU position. That revealed her desire to maintain the patent and it showed her previous "explanation" was a lie.

I certainly don't think she's all bad! I give her major kudos for promoting greater awareness of PXE (and now other genetic diseases), her organizational skills and her money-raising efforts, but it was pretty ugly how everything transpired.

NAPxE still exists, but it's on life support. The (blind) President of that group allowed their old web page to expire, and supposedly Terry quickly bought the rights to it before NAPxE realized the oversight... like she was hovering around awaiting the opportunity. So there's some persistent vindictiveness if that's true. NAPxE then created a new web page, but it doesn't get updated very often anymore.

EDIT: It's also not in my best interest, as a person with PXE, to dissuade people from donating money for research into the disease, so I wouldn't want to modify the Wikipedia page for that reason too.

Interesting story.

This country is sick !!!!!

None! Zero! Fuck them all. Good cops, bad cops! Fuck all of them!

I'm sure a few "good" cops did this as well!

you can't have 'GOOD' cops when they cover up or turn the cheek so to speak with corruption amongst their peers. Honestly, if there was a cop that I knew that was doing this shit, I would have been announcing that shit to the press.

are terrorists.