Talking parrots, cursing Sumatran orang utans, accidental gene therapy on your family, biotech industrial espionage through cell line contamination, body-snatching, legally-enforced tissue sampling by bounty-hunters, illegal human-chimp hybrids etc. etc.
These are some of the plot-points in ‘Next‘, Michael ‘Jurassic Park’ Crichton’s new book. Of late, Crichton has turned away from the straight techno-thriller to issue-based thrillers. His last book, ‘State of Fear‘ tackled the politics of climate change. In this book, the focus is the ethical dilemmas raised by the rapid progress made in the area of medical genetics.
Crichton needs a vent for his polemic and many of the characters in the book are merely poorly fleshed-out mouthpieces for his beliefs - a disappointment from the creator of ER, an accomplished character ensemble piece. In fact, Crichton’s fundamental anger at scientists and the ramifications of modern genetics clouds the book to such an extent that the only protagonists that the reader can begin to empathise with are of the non-human variety: the aforementioned wise-cracking African grey parrot and the faeces-tossing human-chimp hybrid! The human characters, especially the scientists, are portrayed as unscrupulous, money-grabbing, self-aggrandising monsters.
The very first page sets the scene for the pervasive criminality and moral bankruptcy among the scientists (and had particular resonance for me!):
“It wouldn’t be the first time a postdoc got tired of working on salary. Or the last.”
Now scientists are of course prone to all human frailties but Crichton tends to forget a) some might be doing their job because they believe it will do some good b) medical science has actually made tangible contributions to the modern world. He prefers to concentrate, Mary Shelley-style, on scientists as destroyers of the natural order or devious prospectors in a genetic goldrush. One gets the impression that Crichton has cut and pasted the merciless personalities of lawyers or financiers from his previous thrillers straight into this book.
His need to get his concerns across has meant that ‘Next’ is a book of two halves. In the first half, numerous bizarre vignettes and press clippings serve to dramatise the ethics of human genetic research and commercialisation. These are mixed with a multi-strand plot set-up for the latter half of the book, which follows a much more conventional, if rather weak, thriller structure. As such, Crichton tests the patience of the reader looking for the filmic flowing story that he normally produces.
However, if you can get beyond Crichton’s leaden writing style and sensational plotting, there are some interesting opinions to be found which have particular relevance to the research work carried out in psychiatric genetics. This is especially evident in a tagged-on chapter at the end in which he proposes five main changes which he believes will save medical genetics from itself (see below).
But before I discuss that, Crichton has some explaining to do…
Generally Crichton knows the science (he is a Harvard medical school graduate and directed ‘Coma’ which shares similar themes), although he does make a few howlers. These include the laughable (although perhaps suitably sensationalist) mislabelling of a transgenic chimp as a ‘transgender’ chimp and a misconception that human-chimp homology refers to genes rather than nucleotides (’humans have 500 different genes compared to chimps’)! But, more importantly, has Crichton chosen the right medium to voice his concerns? The problem I have is that the lay reader is ill-equipped to make the distinction between the outrageous actions of the portrayed scientists (the thriller) and the author’s calmly reasoned arguments set out in the book’s post-script. The former appears to be used as justification for the latter. Neither the standard procedural controls on scientific research nor the the typical motives of scientists are presented to the reader. Real research involving experimentation of any sort is regulated ad infinitum. In the UK for example, if you want to carry out an animal experiment you would, quite rightly, need a personal license, a project license and a site license…then you would have to convince a funding body that your research was ethically justifiable….all before you started…and then your procedures are monitored throughout: including vet inspections. In terms of real-world motives, scientists in UK academia are within a nation-wide pay-scale, with any consultancy work negotiated through (and capped by) the University. Aside from setting up spin-off companies, there are no opportunities for amassing vast personal wealth through fair means or foul. Scientists really want publications and money for research and that is the basis for much commercialisation of their findings…as leverage for funding from industry. In ‘Next’ we have scientists accidently taking viral gene therapy materials home in the car and infecting family members….impossible. We have scientist carrying out an apparently unfunded and unauthorised human-chimp hybridisation experiment as some sort of sabbatical afterthought…..in the full knowledge that it would be utterly unpublishable: in the Real World there would be no point, quite aside from the illegality of the procedure. So Crichton’s fiction and fact approach is a little dishonest if entertaining.Apart from the attempt by a character to forcibly genetically test his wife for Bipolar Disorder as part of a custody battle, it’s not until the sober manifesto at the end of the book that there is much to debate for those working in psychiatric genetics. Readers should be aware that Crichton is writing with respect to US law and practice but there are many crossovers into more universal problems. His five points are:
- Genes should not be patented
- Tighter regulation on the use of human tissues
- Full disclosure of gene therapy/drug testing data to the public
- Remove all bans on particular aspects of genetic research (e.g. stem cells)
- Rescind the Bayh-Dole act (reducing the ties between academia and industry….a US issue)
The first two points are particularly interesting. Crichton has issue with speculative gene patenting….as epitomised by Myriad Genetics’ actions. He presents some compelling examples where patents have hindered the pace of research relating to important public health issues. However, Crichton sees gene patenting as some sort of ‘people ownership’: the removal of some innate freedom of the individual. Not mentioned is the astronomical cost of new drug development and testing - a burden that only industry can realistically carry. It is simple economics that they want to protect that huge investment, and gene patenting is the first step to safeguarding intellectual property along the length of the pipeline leading to the new therapy. In this light, patenting can be thought of as advantageous to the individual - it’s the only viable model for the production of new medicines. Moreover, gone are the days of vague gene patents…now experimental evidence and a precisely defined scope is required to persuade patent assessors that a gene patent merits granting.
Tissue/patient samples are cause for concern because Crichton believes that the ‘ownership’ of the samples is not clearly defined in law: does the patient retain rights, the clinician or the academic body? Should the patients’ permission be sought if samples are to used for different research purposes. Crichton touches on the implications for family members should an individual be found to be genetically compromised. This point is going to be very important for psychiatric genetics in the next decade as a multitude of discovered genetic risk factors are identified and converted into diagnostic reagents. Who within and without the family circle should be privy to such information?
Given the public exposure of this book, scientists should be prepared not only to answer questions arising from it but also engage in the ongoing debate over changes in regulations and laws.
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Posted by: 402300572 | 12/17/2011 at 06:42 AM