[Re: https://www.hifa.org/dgroups-rss/what-do-you-authors-think-about-partial... ]
Hi Erica,
You raise a really interesting debate here, about how we can defend what I would describe as 'human' rights - own our own intellectual property - and individual medical and genetic identity - and the contractual nature of it's wider dissemenination (publication).
I have long argued, that we need harmonisation and legal protection of such rights, across all sectors, from the creative industries to science and technology. In my opinion, we need global recognition and protection of personal individual rights to thought / images /biomedical data, to protect us ALL from gross exploitation, misrepresentation, and abuse.
Whilst I wholeheartedly support the need to disseminate health information at a global level, in the interests of human life, I believe we urgently need to prioritise such individuated rights protection, before we even get to the 'how/where/what' of publishing such data.
And I would say, that it is the LACK of such clarity, which continues to perpetuate the exploitation of writers, by publishers, which you describe. Great topic for debate! Thanks for raising it!
Best Wishes, Fiona
HIFA profile: Fiona Branson is director of a therapeutic/educative theatre company, NutCase Theatre Limited, UK. Professional interests include the promotion of education, equality and understanding worldwide. Theatre, music, art, human rights. fiona.branson AT btopenworld.com