When ICIJ began discussing how to write a story about the untraceable global trade in human tissues, our intent was not to propel readers to toss out their organ donor cards. Our intent was to shine light on deficiencies in the hope of improving a donation system that can improve and in some cases even save lives.
But reader comments in our partner publications have me concerned. Many sound like this man:
"I have been listed an organ donor since about 1975, when it first was initiated in my state. I did not realize it had morphed into a "for profit" gig, and will be amending my driver's license until this is sorted out."
After eight months of research, I have learned a lot that might turn me off tissue donation. Many tissue bank executives bring in big salaries, and that might seem to go against the spirit of the law, which expressly outlaws buying and selling human tissue. But tissue banks – both for profit and nonprofit – are allowed to charge fees for the recovery, processing and distribution of tissue.
The money is justified by the industry because of the real costs involved. Making implants out of human flesh isn't cheap. And tissue banks need to be able to attract talented people away from other sectors.
"We think of charities as being small. But American Red Cross, the international charities, those are huge," says Christina Strong, a lawyer for nonprofit organ and tissue banks. "They pay real money to hire people to do real good work."
Some tissue banks may appear disrespectful of the gifts they receive, tossing around terms like "gutter" tissue when referring to material that doesn't meet transplant standards but is then used for research on developing new products. Tissue banks overseas have allegedly taken tissue without consent.
And the tissue banking industry largely reacts to our reporters' questions in an opaque "circle the wagons" sort of way – similar to the way the Food and Drug Administration handled our inquiries. That certainly raises an eyebrow for a transparency fanatic like me.
But in spite of all that, I'm still an organ and tissue donor. My sentiments align more with those of this reader:
"I rather like the idea that some of [my tissue] could be put to good use to help someone still living who has a real need for a ligament or a retina or a valve or skin for burns."
That's not to say I may not tailor my donation. Some states in the U.S. allow donors to specify what tissues can be taken and where it goes. A good resource is Donate Life America.
Some states allow donors to specify whether their tissue can go to a for-profit company, be used for cosmetic purposes or be shipped overseas. But others do not.
For example, I'm a donor in the state of New Hampshire. When I signed my donor card at the Department of Motor Vehicles, I was agreeing to give my organs and tissue for transplant or research.
But I can alter that choice to some extent. I can specify if there are tissues I do not what to donate, or if I object to my tissue being used either for research or transplantation.