The gist: Today, most Americans have their tissues on file somewhere. These tissues come from routine medical tests, operations, clincal trials and research donations -- they're often used in research without our knowledge, and can be worth vast sums of money. Some experts believe this violates people's rights, skews how tissues are used in research, and jacks up the cost of drugs and diagnostics (patients supply the tissues and tax dollars that make the research possible, they don't share in profits, then pay steep fees for the products derived from their contributions). But at this point, the law isn't clear on whether you have the right to own or control your tissues. When they're part of your body, they're clearly yours. Once they're excised, things get murky.
Scientists, ethicists and policy makers are in the midst of a heated debate over (a) whether scientists should have to ask permission to do research on your tissues or turn them into commercial products, (b) whether you should have any control over your tissues once they're removed from your body, and (c) whether you deserve a cut of the financial action in the form of payments or affordable heath care. My latest article tells the story of this debate -- of cells worth billions, of patients who've fought the system and won, others who've lost, and the important science that comes from all of it.
This story is part of a larger project: For nearly nine years, I've been working on a book about the history and ethics of cell and tissue culture research. It's called The Immortal Life of Henrietta Lacks, about the first human cell line ever grown in culture. Those cells (called HeLa) were taken from a woman named Henrietta Lacks in the 1950s without her knowledge. They became one of the most important tools in medicine, and are still used in laboratories around the world. Those cells have done wonders for science, but they've also had dramatic and troubling consequences for her family. You can read excerpts of their story on my website; the book will be published by Crown in 2007.