David Nicholl: Bodies revealed but with consent for what?

David NichollThe Human Tissue Act (HTA) arose out of the Alder Hey scandal when hundreds of deceased children’s organs were retained without seeking consent from their relatives between 1988-1996 in Liverpool. After the HTA was implemented in 2004, it became a criminal offence to even have a DNA sample, with the intention of having it analysed, without the consent of the person from whom the tissue came—so called “DNA theft.” Yet, there are significant loopholes in the legislation.

In 2010, the Lancet called for the legislation to be amended as the act does not require consent for imported tissues. The issue was raised by the then MP (and retired doctor) Richard Taylor in parliament but nothing happened. Why does this matter? It matters as there are a number of commercial exhibitions of plastinated body parts which tour major Western countries. Thus the basis of consent is fundamental as to whether these exhibitions are ethical or not.

In 2010, 70 doctors wrote to the Daily Telegraph raising concerns over exhibitions of Chinese corpses at one such exhibition, Bodies Revealed, in Birmingham. The Human Tissue Authority satisfied itself solely on “the origins of the tissue based on an affidavit in Chinese.” The Mail on Sunday noted that the organisers of the Birmingham 2010 exhibition, Premier, a US based company, had paid more than £15 million for the bodies from the Chinese authorities. Dr Roy Glover, from Premier, told me in a phone conversation that they had consent for “education and research” but was unable to answer that they had consent for a public commercial exhibition. One charity, which had previously supported Bodies Revealed, withdrew support as “the organisers had not been able to give her an ‘unequivocal’ guarantee that the bodies had not been victims of execution or torture.”

Why the controversy? At a 2008 exhibition that Premier organised in New York, the New York Attorney general forced Premier to put a disclaimer on the exhibition that stated the following:

“This exhibit displays human remains of Chinese citizens or residents which were originally received by the Chinese Bureau of Police. The Chinese Bureau of Police may receive bodies from Chinese prisons. Premier cannot independently verify that the human remains you are viewing are not those of persons who were incarcerated in Chinese prisons.

This exhibit displays full body cadavers as well as human body parts, organs, fetuses and embryos that come from cadavers of Chinese citizens or residents. With respect to the human parts, organs, fetuses and embryos you are viewing, Premier relies solely in the representations of its Chinese partners and cannot independently verify that they do not belong to persons executed while incarcerated in Chinese prisons.”

Remarkable though this statement is, it is worth noting that no such statement has ever appeared on any of Premier’s exhibitions in the UK—indeed neither the 2010 Birmingham “Bodies Revealed” nor the current Liverpool “Bodies Revealed” exhibition even mention the country of origin on their website.

Other countries are less sanguine—last month, the Israel Supreme Court forced the premature closure of a Premier exhibition in Tel Aviv calling it a “violation of human dignity including the dignity of the dead.”

The organisers of the Liverpool exhibition have tweeted that the New York and Tel Aviv exhibitions are different from the Liverpool one, even though all three were organised by Premier. In 2008, ABC’s 20/20 documentary tracked down the source of Premier’s bodies to Dalian in China. The programme included allegations that bodies of executed prisoners were used; this was denied by Premier. A subsequent legal dispute between various plastinating companies resulted in the main witness recanting the allegation.

This is a far cry from the original intent of the Human Tissue Act—a piece of legislation that is, in fact, so weak that we still have no idea who the bodies in Liverpool are, what they died of, what educational purpose they consented for, or what the research question was to which they consented to. Given that an online petition and the measures listed above have failed to move parliament, it seems unlikely that the HTA will be amended. Perhaps a better way forward is for the European Parliament to look at this topic. This year, there have been attempts at public exhibition of plastinated body parts in Glasgow as well as actual exhibitions in Dublin and Slovakia. Since the European Union has an absolute ban on the death penalty is it not time that such exhibitions are properly regulated as the corpses concerned almost invariably come from countries with poor human rights records?

Clearly if one was to amend the legislation, one would not want to affect legitimate exhibitions, eg of archaeological tissue. Nonetheless, I remain optimistic that if worded correctly, for example, to block imports of plastinated tissue from those countries that use the death penalty, such legislation, at a stroke, could improve the ethical standards of this unregulated industry.

Are there any implications for pathology in general? One of the unattended consequences of the Alder Hey scandal and the Human Tissue Act has been the plummeting rates of hospital post mortems—far less than 5% in most hospitals. Yet the public needs to see beyond the “Yeugh factor” and realise that without good quality, and ethical, autopsies conditions such as variant CJD and many other neurodegenerative diseases would remain to be discovered. The role of the pathologist, working with proper informed consent, should be celebrated and the public truly educated about this important medical specialty. The Bodies Revealed exhibition however is no such thing.

David Nicholl is a consultant neurologist at City Hospital, Birmingham. He acts as an expert advisor to the European Commission assisting with the review of the measures against torture laid down in Regulation (EC) No 1236/2005.