Download Body Shopping: The Economy Fuelled by Flesh and Blood

Body Shopping:
The Economy Fuelled by Flesh
and Blood
Donna Dickenson
Emeritus Professor of Medical Ethics
and Humanities, University of
London
Who owns your body?
• Of course I own my body—don’t I?
• Not in law: once tissue has left the body, the
common law presumed we had no further
interest in it, if it was diseased
• But in 21st century we’re witnessing a new
Gold Rush, whose territory is the body
Is your body just a consumer item
like any other?
• Can your genes and tissue be processed,
sold and turned to make a profit?
• They most certainly can, and any number of
interested parties have their eyes on them,
in ways that will probably never have
occurred to you
• Body Shopping will alert you to some of
them, although they change daily
How has this happened?
• The first legal case establishing that we
don’t own our bodies involved John Moore,
a 31-year-old patient with hairy-cell
leukaemia whose spleen was removed in
1976 for clinical reasons
• Moore’s doctor, David Golde, also asked
him to return many times to donate blood,
sperm, bone marrow and other tissue
Why was Moore’s tissue so
valuable?
• Unbeknownst to Moore himself, his tissue
produced unusually large amounts of Tlymphocytes (white blood cells controlling
production of lymphokines, proteins that
regulate the immune system)
• If researchers could isolate genetic codes
from Moore’s tissue, they could make cell
lines of T-lymphocytes in huge quantities
What happened next?
• Seven years after his surgery, Moore began
to suspect the ‘consent’ forms he kept being
sent (‘I do/do not voluntarily grant all rights
I or my heirs may have in any cell line or
any other potential product developed from
the blood/ bone marrow obtained from me’)
• Finally refusing to sign, Moore then
discovered what had really happened
Patents and patients
• Dr Golde and the U. of California had taken
out a patent on the ‘Mo’ cell line, by then
valued at $3 billion
• In 1984 Moore brought a lawsuit claiming
lack of consent and interference with his
rightful property (‘conversion’ in law)
• Aimed mainly to vindicate his own dignity,
not to make a profit
Property in the body
• Moore could only succeed if the courts
recognised there was such a thing as
ongoing property in excised tissue
• But Moore was found not to own his body,
although he won on lack of consent
• Law says excised tissue is ‘waste’—but a
$3 billion cell line is some junk!
How much work does it take to
make a spleen?
• Labour and skill, said the Moore court, are
what create property rights in bodies,
including patent rights
• Should Moore have been rewarded for
undergoing an operation that benefited his
health? Should he be financially lucky
because he just happened to have unusually
potent T-cells?
Research and property rights
• Court held that there would be a chilling
effect on research if patients had to be
compensated for the full final value of their
tissue
• But doesn’t granting property rights only to
corporations and researchers also lead to
defensive patenting and high drug prices?
A dissenting opinion
• ‘Recognising a donor’s property rights
would prevent unjust enrichment, by giving
monetary rewards to the donor and
researcher proportionate to the value of
their respective contribution. Biotechnology
depends on the contribution of both patients
and researchers.’—Justice Mosk in Moore
Greenberg: ‘the contribution of
both patients and researchers’
• The Greenberg case is even more shocking
to most people than the Moore judgment
• Donors or dupes?
• Case involved parents who had lost two
children to Canavan disease, a degenerative
genetic disease, where parents can be
carriers without knowing it
Background to Greenberg case
• Debbie and Daniel Greenberg were both
carriers of Canavan disease, one of a group
of inherited neurological disorders,
including Tay-Sachs disease, which impair
growth of myelin sheath insulating nerves
• Children with CD cannot walk, crawl, sit or
talk; may develop seizures, paralysis and
blindness; most die before puberty
The parents’ contribution
• After deaths of their two children, who had
both inherited the two recessive genes,
parents contacted Dr Reuben Matalon and
asked him to develop genetic test
• Greenbergs provided own children’s tissue,
found 100 other parents willing to do same
• Formed Canavan database and gave money
‘All the time we viewed it as a
partnership’
• Although Greenbergs viewed their work
with Matalon as a partnership, he and his
employer hospital took out comprehensive
patent without their consent or knowledge
• Patent covered diagnostic screening
methods, kits for carrier and antenatal
testing, and gene coding for Canavan
disease
Benefits or blockages to research
• Hospital claimed it needed to recoup outlay
on research, but actually Greenbergs and
other parents had provided that
• Patent enabled hospital to charge fees for
testing, meaning that free testing previously
offered by Canavan Foundation was no
longer affordable for many parents
The court case
• Canavan families and charities filed lawsuit
alleging breach of informed consent,
fiduciary duty and unjust enrichment
• Like Moore, they won on breach of
informed consent but lost on other claims
• They were found to have no ongoing
property in their children’s tissue
Patents and research
• The only favourable aspect of the
Greenberg decision is that the court
recognised that restrictive patents could
actually impede research and therapy
• Some researchers and diagnostic
laboratories were exempted from having to
pay license fee or royalty, in exchange for
agreeing not to challenge patent
But as a rule…
• Other biotechnology companies have been
allowed by US courts to charge diagnostic
fees for genes on which they hold patent
(BRCA1 and BRCA2, held by Myriad
Genetics)
• Drugs which target particular genes are
patented along with the genes (Herceptin);
competitors can’t develop cheaper drugs
How can you patent life?
• Patent taken out on cloned version of gene
created in laboratory, not gene in your body
• Yet diagnostic test is performed on gene in
your body, not gene in laboratory
• Corporate ‘players’ design genetic research
strategy around genes that would be most
profitable to patent, not necessarily diseases
most needing cures
Patents in stem cell research
• Patent application may possibly be granted
even if science behind it is flawed
• Hwang Woo Suk had filed patent related to
eleven tissue-matched stem cell lines he
falsely claimed to have created
• Patent applications still pending on method
A piece of Science fiction
• Hwang’s 2004 and 2005 publications in
Science were greeted with universal acclaim
• Few commentators asked where the
necessary human eggs for his somatic cell
nuclear transfer research had come from
• Subsequently transpired that he had used
2,200 eggs to create precisely zero lines
Another example of body
shopping
• Hwang’s research is another example of
body shopping, because he bought many of
these eggs from a commercial broker
• Others were ‘given’ (not so freely?) by his
junior research colleagues, in violation of
Helsinki Declaration
• Many women developed ovarian
hyperstimulation syndrome, which can kill
International markets in eggs
• Egg market for IVF in US is highly
stratified by ‘desirability’
• European market developing in Spain and
Cyprus, involving Eastern European women
• But for SCNT research, phenotype of seller
is irrelevant
• Third World women will be cheapest sellers
International Society for Stem
Cell Research guidelines (2007)
• Differentiate between egg ‘providers’ (in
IVF context) and egg ‘sources’ (for SCNT
research), who can be given much lower
remuneration and fewer protections
• Risk of exploitation and inducement
(McLeod/ Baylis 2008, Dickenson 2001)
Cybrids and ‘human admixed
embryos’
• UK Parliamentary debate over use of
‘human admixed embryos’ (using animal
eggs) must be understood in context
• Women’s reluctance to donate eggs because
of risks of OHSS
• SCNT research’s huge demand for eggs and
lack of proven results so far
The global scale of body
shopping
• Markets in tissue like eggs, as well as
patenting system, extend beyond any one
country
• Global in another sense: all kinds of tissue
have become objects of intense commercial
interest
• Example of private umbilical cord blood
banking
My body, my capital?
• One way of understanding this new
phenomenon is in terms of the body as
entering the global marketplace: my body,
my capital
• But is this necessarily a good thing?
• Sellers of kidneys in India, impoverished by
tsunami, aren’t using their bodies to create
further wealth--the definition of capital
The global genetic commons
• An alternative idea is suggested by the US
law professor James Boyle
• We can understand the way in which the
body has become an object of trade by
likening it to the agricultural enclosures
• That which was previously public—like the
human genome—becomes privatised
Why we all have female bodies
now
• Boyle is right to liken our lack of property
rights in our bodies to the way poor
peasants lost entitlements under the law
• But female tissue is of particular value
• All bodies are ‘open-access’, just as
women’s bodies have been made objects
• We need new models of regulation and law