educating patient advocates. She
says if patients know about the
promise of research that requires
donated tumors, they may be
more likely to donate.
“They have to get excited that it
means something to the research
and therefore future patients,” she
says. “Most cancer patients I know
are pretty altruistic. They would
prefer it helps them, but if it can’t
help them, it could help someone.”
CR | Page No. 38 | Summer 2009
Research wants to standardize
these practices.
Some biobanks have already
adopted the guidelines. Now,
Compton’s office is planning
a national resource called the
Cancer Human Biobank, which
will give investigators access to
large numbers of high-quality
tumors and other tissues that
have been collected and stored in
consistent ways.
THE DECISION TO DONATE
Like all biobanks, the Cancer Human
Biobank will depend on willing
donors, and donors begin with
consent forms. Informed consent
is supposed to give people enough
information about research for
them to make an educated decision
about whether to participate.
In the case of tumor donation,
however, informed consent can
be complicated. Specific details
about future research that could
make use of the donation aren’t
usually known at the time of
surgery, so patients may be asked
to sign a consent form that gives
an investigator broad permission
to use the tumor.
Tumor donation issues will
probably be the last thing on a
patient’s mind, says Mary Lou
Smith, a two-time breast cancer
survivor who has donated tissue
to both the Susan G. Komen for
the Cure Tissue Bank, located
at Indiana University’s Simon
Cancer Center in Indianapolis, and
the tissue bank at Northwestern
University’s Robert H. Lurie
Comprehensive Cancer Center in
Chicago.
“When you’re diagnosed, you
really do get put in a different
mind-set very quickly,” Smith says.
“When my doctor said, ‘We have a
tissue bank here, and my nurse will
give you the informed consent,’ I
knew about it already. If I hadn’t,
I don’t know that I would have
been in a great frame of mind [to
consider donation].”
Smith helped found the
Research Advocacy Network,
an organization dedicated to
WHO OWNS A DONATED TUMOR?
The issue of tissue ownership
immediately comes into play as pen
hits the informed consent form.
In the body, as unwanted as it is,
a tumor is clearly owned by the
person whose body it inhabits. But
the picture blurs after surgery. The
answer to “Who owns a tumor?”
depends on whom you ask.
“Patients ultimately own their
own tissue,” says pathologist
David Rimm, the gatekeeper of the
tumor archive at the Yale School of
Medicine. “If they request access
to the tissue, we will give them the
block [containing the tumor].”
Rimm’s sentiments echo
those of many pathologists, who
believe that hospitals and other
institutions are the custodians of
a person’s tumor. But pathologists
don’t write the law. So far, tumor
ownership has been tested only a
few times in court, and there are
no national laws on ownership.
As legal cases arise, individual
courts have to forge a new path. So
