Henrietta Lacks died of cervical cancer, but cells taken from her body have been used to create vaccines (yes, THAT vaccine) and have made Big Pharm untold riches. She, nor her family, have ever received a penny. Tissue is still being taken without Informed Consent, utilized for research and profit generated, despite changes in the law since Lacks.
Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania, said most are unaware of the issue.
“If you go to the hospital, they take out your appendix, they give you a form saying we are removing these tissues, we may use this for research, is that OK with you? And do you renounce any claims to any commercial discoveries we may make?” Caplan said.
“Ninety-nine percent of people sign that form without a second thought — they probably don’t read it. Most people don’t really care what happens to their appendix afterward. You’re sick, you’re trying to get treatment, you’re not trying to get into a commercialization fight with your prostate cancer doctor.”
How does this apply to living donors?
Well, a would-be recipient could be involved in a clinical trial and the living donor has no legal right to know about it. Paired kidney donation and kidney chains require living donors to have their kidney transplanted in a stranger instead of their intended recipient, yet they have no right to know about that recipient’s health status, compliance with treatment history, etc. In fact, once an organ is removed from a living donor, a surgical team could be guilty of gross negligence in how it is transplanted into the recipient, but the living donor has no rights or legal recourses thereof. The living donor must go through life permanently compromised and at higher risk for hypertension, cardiac problems and kidney failure but have no claim for compensation.