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 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 21 st century were 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 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

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

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

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

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 childrens 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 childrens 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 cant 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 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

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

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 Womens reluctance to donate eggs because of risks of OHSS SCNT researchs 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, arent 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 publiclike the human genomebecomes 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 womens bodies have been made objects We need new models of regulation and law