What’s ‘Next’ for human Genetics

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:

1. Genes should not be patented
2. Tighter regulation on the use of human tissues
3. Full disclosure of gene therapy/drug testing data to the public
4. Remove all bans on particular aspects of genetic research (e.g. stem cells)
5. 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.