In September 2000 a worker at
a storage facility in Halifax made a gruesome discovery.
The lease on a storage space had expired, and on opening
one of its boxes he found human organs in a plastic bag.
They turned out to be from an eight-year-old girl.
Soon after, an arrest warrant was
issued for Dr Dick van Velzen, a Dutch pathologist and
former head of pathology at Halifax's IWK Hospital until
being fired in 1998. It quickly emerged he was facing
charges for removing organs from hundreds of dead children
at a UK hospital without the parents' permission. On
December 15, British prosecutors announced that, after
a lengthy police investigation, they could not charge
him because they couldn't prove which organs came from
As for the Nova Scotia case, Dr
van Velzen admitted to the charge of improperly storing
body parts removed from the girl after having conducted
post-mortem tests at her parent's request. He was convicted
in July 2001 and given 12 months probation.
In both the Canadian and British cases, Dr van Velzen
has always claimed that he only ever removed and stored
organs for research and educational purposes. This incident,
and similar ones in Ireland and the US, has fuelled
debate in hospitals and research institutions about
whether the use of removed human tissue for research
purposes requires consent from the patient. Is a removed
tumour still the property of the patient? What about
a spleen or a limb?
"Consent issues are more and more
on people's minds," says Dr Gordon DuVal, from the University
of Toronto's Joint Centre for Bioethics. "Privacy legislation
has made everyone sensitive about these kinds of issues."
Canada's Interagency Advisory Panel
on Research Ethics, which sets out the parameters for
any human research in the country, holds that "Researchers
shall provide, to prospective subjects or authorized
third parties, full and frank disclosure of all information
relevant to free and informed consent."
This is clear when a physician
or researcher knows ahead of time that they wish to
use their patient or their removed tissue in a research
project, but clarity can be lost when it comes to removed
and discarded tissue researchers may wish to use after
the fact. Is this material part of the patient's informed
The policies of Canadian hospitals regarding this issue
vary, according to experts. And the fact that Canada
lacks a clear national policy further complicates the
issue. But coming up with one carries its own complications.
After its organ retention scandals,
Britain drafted a comprehensive human tissue bill. But
many research bodies there are critical of its stringent
controls, saying the red tape will set research back
in that country. "It's like using a sledgehammer to
crack a nut," said Lord May, president of Britain's
Royal Society, in an address to the scientific academy.
"No distinction is made between tissue samples taken
during routine diagnostic tests at one end of the scale
and the removal of organs during post-mortem at the
other." He went on to say the added bureaucracy involved
in getting consent for every tissue sample could hamper
advances in several fatal diseases.
Another British body, the Nuffield
Council on Bioethics, thinks the matter could be simplified
by a view that consent is consent. In its report "Human
Tissue: Ethical and Legal Issues," it recommended that,
"when a patient consents to medical treatment involving
the removal of tissue, the consent should be taken to
include consent also to the subsequent disposal or storage
of the tissue and to any further acceptable use provided
that this is regulated by appropriate ethical, legal
and professional standards."
But in the absence of consensus here and abroad, Dr
Randi Zlotnik-Shaul, a bioethicist at The Hospital for
Sick Children in Toronto, advises doctors and researchers
err on the side of caution, but adds that maybe we need
to tweak our system for obtaining consent. "In terms
of the ethics of it, a lot of people would argue that
within a regular consent form for surgery there should
be something included saying that waste may be stored
or used for research or educational purposes," she says.
"Some say there should be an opt-out clause for patients
so they will be able to say 'I don't want any discarded
tissues used for research'."
Dr DuVal adds that in the case
of fetal tissue or stem cells some patients may have
strong convictions regarding their use, making detailed,
informed consent even more critical. "I wouldn't accept
the argument that [this tissue] was discarded or had
been intentionally abandoned when the person didn't
know that it could be used for research or be valuable
in somebody else's hands," he says.