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Recent Newspaper & Online Columns by Kate Scannell MD

Who really owns your spleen?

By Kate Scannell MD, Contributing columnist Bay Area News Group
PUBLISHED IN PRINT 08/08/2010

BELIEVE IT or not, parts of your own body might not always belong to you.

Tony Bennett may have famously -- and figuratively -- left his heart in San Francisco. But with much less fanfare -- and, quite literally -- people routinely leave behind parts of their organs and tissues in hundreds of cities across the country every single day.

They leave biopsies of skin, breast, liver, prostate, bone marrow -- you name it -- to doctors, hospitals, and diagnostic centers. Sections of their colons, lungs, and limbs are removed during surgeries, sent to labs for pathologic examination, and ... then what?
It turns out that those discarded tissues are often stored -- for indefinite periods of time -- in public or private "biobanks." Some of those storage facilities are regulated, others are not. And the eye-widening fact is that these biobanks house tissue specimens from the majority of American citizens.
Serious questions about the fate and ownership of these stored specimens have skyrocketed recently. At stake in this "tissue issue" are billions of dollars in research and commercial markets, million of lives, and however many philosophical riddles dance on the head of a pin.
The relevance of this issue for us everyday folks was highlighted last week in a widely publicized story concerning a 37-year old woman dying from a brain tumor. As The Philadelphia Inquirer reported: "All Niki Perry wanted was pieces of her own brain, and she got angrier by the day as she tried to get them. She needed samples of her brain tumor this spring to enter clinical trials she hoped might save her life."
As reported, Perry had fully expected that her frozen tumor samples would be made available by the hospital where she'd undergone surgery. In fact, anticipating that "she might want to enter a European cancer vaccine clinical trial or seek genetic testing that would require frozen pieces of her tumor" she had explicitly asked her surgeon to "freeze some just in case."
But when Perry arrived at the hospital to secure those samples, the freezer was empty. Her hoped-for "chance of a lifetime" melted away. The hospital had no comment.
Like Niki Perry, patients are increasingly demanding access to their own stored tissues and the right to decide how they are used. But this demand frequently conflicts with the research and commercial interests of hospitals, academic centers, pharmaceutical companies, and the biotechnology industry -- all of whom depend upon human biomaterials for scientific discovery and product innovation.
This heightening patient demand has arisen for several reasons. Foremost among them is the burgeoning era of "personalized medicine" -- in which a patient's treatment is tailored to his unique genetic or personal characteristics, rather than a "standard" of care based upon population studies and group characteristics.
For example, some oncologists now routinely perform genetic profiling on various cancers, hoping to develop treatments targeting the specific genetic mutations. And with some cancer vaccine trials, scientists aim to create vaccines uniquely concocted from cancerous tissue, one patient at a time.
Though the "promise" of personalized medicine largely remains a "promise" currently, its muscular momentum is sweeping through health care and consumer marketplaces.
Last year, PricewaterhouseCoopers estimated that the U.S. market for personalized medicine already registered $232 billion.
Another basis for patient interest in stored biologic materials rests on dollar signs. Millions of them. Patients have watched researchers profit from products developed through experimentation on their discarded tissues, and many feel entitled to a share of the revenue. In a landmark legal case, California courts denied a patient named John Moore the property rights in a lucrative cell line that had been developed from his spleen -- but granted those rights to the UCLA surgeon-researcher.
This fraught issue concerning tissue ownership and patenting authority is compellingly explored in a current bestselling book -- "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. This true story tells us about the woman from whose biopsy a multimillion dollar "HeLa" cell industry was launched -- all the while that her surviving children struggled financially, often unable obtain basic health care. When her children finally learned about the commercial profiteering from their mother's tissue, their distrust of the research establishment escalated beyond its already-heightened level fueled by racial, class, and gender issues.
These last two stories provide further rationale for growing public interest in biobanked materials: frayed trust of the research establishment. Neither John nor Henrietta knew that their body parts would be used to generate commercial products that would someday appear in glossy biomaterial catalogs or on lab shelves throughout the world. Moore and the Lacks family felt violated -- personally, physically, and psychologically.
Such mistrust has inspired groups of people to challenge the current system. Last year, for example, parents sued Texas health officials for storing infant blood samples without parental consent. They later learned that the officials had been selling samples to biomedical companies and handing others to the federal government to help it create a massive DNA database.
Concerns about privacy and confidentiality also stoke the budding "tissue movement." Because DNA within stored biomaterials remains specific to an individual, there exists a potential for undesired revelation or disclosure of someone's identity in future medical, family, or forensic matters.
In light of current public trends, it is unlikely that the research establishment will be able to continue "business" as usual involving human tissues. It will need to improve offerings of communication, transparency, and informed consent if it hopes to renew the public's trust -- upon which it depends. And it will need to understand and respect the many ways that people value the parts of their sum.
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Kate Scannell is a Bay Area physician and syndicated columnist. Her new novel is "Flood Stage."

Copyright Kate Scannell 2010