Sunday, April 16, 2006

Who owns your tissues? What are they being used for? And how come you don't know?

My article about the little-known world of tissue research ("Taking the Least of You"), is on the cover of this Sunday's New York Times Magazine. Be sure to pick up an actual copy so you can see Marcel Dzama's incredible artwork illustrating it (left). In the meantime, you can read it online. (After this story went to press, there was an interesting development in one of the cases I cover -- check back Sunday for a detailed post updating the story.)

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.

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Anonymous Paul said...

I think your article should have made two points more clearly:
(1) Current regulations allow researchers to use your tissue without permission only if it is done anonymously with no possibility of tracing back the donor's identity. Otherwise your consent is required.
(2) Adding to the regulatory and administrative burden of clinical research--which requiring consent for anonymous use of samples would do--is a decision that has real costs. As it is, much clinical research is done outside the US because of the existing regulatory burden, and increasing this burden will increasingly weaken the standing of the US research enterprise relative to the rest of the world.

There are a lot of HORRIBLE things going on in the world of medicine: thousands of patients dying each month because too many people fail to list themselves as organ donors; inequalities in access to care; misplaced priorities in health care spending; and profit motives taking precedence over patient well being. Do you really think that failure to compensate patients for their valuable tissue samples even approaches the seriousness of these other problems?

1:07 AM  
Anonymous Anonymous said...

Liked the article. I think this brings up the broader question of whether or not a scientist should be allowed to patent a living thing or a gene. It took considerable ingenuity to make the discovery. But doesn't it belong to everyone? Especially when you consider that in most cases the discovery was made using tax dollars.

I think the story about the prostate cancer doctor/scientist highlights this problem the most. He genuinely seems to care about helping people. He didn't seem concerned about making a buck and consequently he wasn't business savvy. Now the university he worked for is holding information and tissue from his patients hostage because they think that they are entitled to any money that comes from any discovery related to those tissues. I think that is bunk! The scientist brought prestige and millions of dollars in federal grants to the university. Probably more than his salary.

As to what the poster above is saying. I think it's true there are lots of problems in health care. But I think greed is probably the biggest. What kind of mentality justifies squeezing sick people for thousands and thousands of dollars that they don't have for drugs that were invented or whose development was funded using tax dollars? Why should we pay twice?

11:18 AM  
Anonymous M. Zottola, PhD said...

Yes, this article is chilling. It’s researched and executed well enough that the two arguments (and all the grey matter between them) clash in a way that elevates the issue to a new level of consciousness. But as the true nature of research, capitalism and human rights become exposed during the battle, and as the three forces collectively search for legal harmony, one thing remains pleasantly shocking—how impossibly adorable Rebecca Skloot actually is. Don’t tell me you’re not all thinking that. I mean look at that picture! –M. Zottola PhD.

12:09 PM  
Anonymous Anonymous said...

Liked the article and the way it makes the point that scientists, universities, doctors, bio banks, big pharma, etc. all treat the tissue as a valuable commodity and profit from it, yet they want to deny the person from whose body it came the same rights. Of course they do. Let's say a company developed a perfect artificial kidney and made it available for $10,000. Nobody would object, and in fact most would probably applaud this scientific advance. However, many doctors would continue to use a "donated" kidney because it's free. The transplant operation would cost the same, but the doctor's profit is greater because his raw materials are free. What other trade or profession has managed to convince us that we should give them the raw materials for their profit making activities and then pay again when we purchase those services. And many times we've already funded their research efforts with taxpayer dollars. The Trifecta!

The first poster is missing the point. The research institution says it owns the tissue and can do with it as it wants. Period. If the patient has a problem with disclosure of personal information he must pursue his remedies under the informed consent rules and show damages from the disclosure. The tissue and all profits arising from it still belong to the institution.

Also, the argument that the U.S. is falling behind in clinical research, even if true, doesn't justify the failure to compensate the providers of tissue any more than the failure of U.S. manufacturers to compete with the Chinese justifies the return of the sweat shop.

6:01 PM  
Blogger Bella Stander said...

Great article. Where's the update?

Now I'm wondering where my tonsils ended up. I had them out (as an adult) 25 years ago at Beth Israel Hospital in NYC. As soon as I came out from anesthesia and while still in the O.R., I asked to see them. I was told I couldn't because they were "already down in Pathology." Hmmm...

12:27 PM  
Blogger Rebecca Skloot said...

Hi Bella -- The update is there now, as is info about one of the radio shows. The other is the Michelangelo Signorile Show on Sirrus, live from 4:30 to 4:50 tomorrow afternoon (eastern time) ... enjoy!

9:38 PM  

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