The HeLa line had its own male-dominated issues, ie: denying her family a right to any money from the use of her genetics ... which, once rectified, led to a signing away of any rights for people who have an interest in helping advance scientific and medical knowledge and/or treatments.

I know this because I was asked to become part of a study, but after reading the contract that clearly stated I (and my family/descendants) would be shut out of any and all financial compensation, I declined.

While I agree with this if/when a government agency or university developes treatments or cures, I do not agree with it when the info is given freely to for-profit big pharma for them to make trillions from.

[–] jarfil@beehaw.org 2 points 9 months ago* (last edited 9 months ago)

her genetics

Honestly, I don't see how any person is entitled to the ownership of info that's shared with 99.9% of humanity, and which neither them nor any of their ancestors had any hand in creating.

It's not like anyone has any custom handcrafted genes (yet). Other than a handful new mutations, even a possible copyright of "until death + 75 years" would have expired a long time ago.

Big pharma copyrighting and patenting the results of their investigations, makes more sense in this case; they've at least done something.

I was asked to become part of a study

You should have the right to get compensated for participating in a study, or for allowing them to associate the info with your name. I just think the info itself is part of the public domain.

Like, if you freely leave a fingerprint somewhere public, and someone decides to extract the DNA from that, then proceeds to use it to develop a treatment, cure, bioweapon, clone you, or test the safety of some extra wings genetic augmentation... then good for them.