Body Shopping: The Economy Fuelled by Flesh and Blood

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Body ShoppingThe Economy Fuelled by Flesh and
Blood

• Donna Dickenson
• Emeritus Professor of Medical Ethics and
  Humanities, University of London

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Who owns your body?

• Of course I own my bodydont 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 were witnessing a new Gold
  Rush, whose territory is the body

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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

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How has this happened?

• The first legal case establishing that we dont
  own our bodies involved John Moore, a 31-year-old
  patient with hairy-cell leukaemia whose spleen
  was removed in 1976 for clinical reasons
• Moores doctor, David Golde, also asked him to
  return many times to donate blood, sperm, bone
  marrow and other tissue

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Why was Moores tissue so valuable?

• Unbeknownst to Moore himself, his tissue produced
  unusually large amounts of T-lymphocytes (white
  blood cells controlling production of
  lymphokines, proteins that regulate the immune
  system)
• If researchers could isolate genetic codes from
  Moores tissue, they could make cell lines of
  T-lymphocytes in huge quantities

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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

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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

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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 wastebut a 3
  billion cell line is some junk!

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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?

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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 doesnt granting property rights only to
  corporations and researchers also lead to
  defensive patenting and high drug prices?

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A dissenting opinion

• Recognising a donors 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

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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

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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

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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 childrens tissue, found
  100 other parents willing to do same
• Formed Canavan database and gave money

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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

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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

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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 childrens tissue

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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

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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
  cant develop cheaper drugs

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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

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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

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A piece of Science fiction

• Hwangs 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

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Another example of body shopping

• Hwangs 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

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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

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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)

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Cybrids and human admixed embryos

• UK Parliamentary debate over use of human
  admixed embryos (using animal eggs) must be
  understood in context
• Womens reluctance to donate eggs because of
  risks of OHSS
• SCNT researchs huge demand for eggs and lack of
  proven results so far

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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

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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, arent using their bodies to create
  further wealth--the definition of capital

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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 publiclike the human
  genomebecomes privatised

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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 womens
  bodies have been made objects
• We need new models of regulation and law