This is an amazing article written by Rebekah Skloot, author of ‘The Immortal Life of Henrietta Lacks’, demanding consent and trust.
Rebecca is right—-the only way Americans will trust researchers is when they are treated with respect and their rights of consent for use of genomes and genetic information is restored.
The public does not yet realize that they have no control over ALL sensitive health information in electronic systems. We have NO idea how many hundreds of data mining and research corporations are collecting and using our blood and body parts. We ALSO have no control over our sensitive health information in electronic systems violating hundreds of years of privacy rights.
This week the many stories about CVS showed employers can force employees to take blood tests, health screenings, and be forced into “wellness” programs–all of which REQUIRE collection of sensitive health information—which employees cannot control.
We have NO map of who collects and uses personal health data—Henrietta Lacks family was NEVER asked for consent to use her genome.
Contribute to build a map to track the thousands of hidden users of health data at: www.localhost:8888/pprold
Attend or watch the 3rd International summit on the Future of Health Privacy (free). Register at: www.healthprivacysummit.org