TransplantInformers Book Club: More thoughts on Donor by Ken McClure
I just finished blazing through Donor by Ken McClure. We introduced this book to you earlier this month, and now having completed it, I thought it would useful to provide a guide to some themes in the book that are most pertinent to donor outreach/education stakeholders. If you’ve already read the book, this may give you some new perspectives to consider. And for those poised to dive in, you’ll hopefully be more attentive to these themes when you take the plunge.
Warning: things get slightly spoilery from here on out, but I assure you it doesn’t diminish the value of reading the book. It might even increase the value!
Written like a scientist
Throughout the text, there are ways that McClure sets up the plot, and the mystery to be solved in very much the same way a scientist might approach their data. In fact, an anomaly in the data that could not be attributed to mere coincidence is what sets of the investigative route that Steven Dunbar (the central “detective” of the book) takes. There’s a passage in the book where he thinks through how he can prove there is something amiss:
‘Medical researchers are trained scientists, meticulous people, precise in all things. Facts and Figures are of paramount importance to them’
…’They must have kept records for all the experiments they’ve done, what went right, what went wrong, what their conclusions were, what they’re going to do next’
Part of what McClure does well is take his background in biology, and translate the scientific reasoning to the investigation of criminal activity. The parallel between a sleuth’s discovery of the truth and the scientific quest for knowledge is interwoven throughout and channeled through McClure’s descriptions of Steven Dunbar’s thought processes.
This echos his own experience, where the author has said:
I’ve noticed over the years that people imagine medical research is carried out by selfless individuals who co-operate with each other in the struggle to overcome disease. This is not so. Research is carried out by competing teams of people, desperate to win whatever race they’re in because there are no prizes for second place. Anyone taking a shortcut or cheating in the race will be ruthlessly exposed and ridiculed so there is tremendous pressure on researchers to make sure that everything claimed can be backed up and verified. I was a researcher for over thirty years so taking ‘meticulous care’ was a way of life for me. Even when I’m writing fiction I make sure that everything I claim could – at least in theory – happen.
Public vs. Private
An important theme in the book is the inequality of dual public and private health care systems. The NHS(the UK’s National Health Service) is mentioned several times throughout. In the same interview cited above, McClure himself had this to say about the NHS:
I worked in the NHS for eight years before I joined the Medical Research Council and my wife was a nursing sister for many years. Many of our friends still work in the NHS so I’m very familiar with the state of it and what goes on. We live in an age where image triumphs over substance and the NHS is not immune to this. Politicians continually come up with schemes which give the image of caring but there’s nothing behind it.
Targets do not benefit patients: they create jobs for administrators who are good at manipulating numbers and waiting lists to make it appear that targets are being met. Monitoring and reporting the performance of surgeons only ensures that surgeons avoid high risk surgery and concentrate on the easy stuff to ensure a good score. I do my best to expose this nonsense whenever I get the chance.
The idealized conditions of privatized care versus the ideals of public care, comes to the fore in one character’s desperation:
‘I’m reduced to sitting here praying that some private hospital is going to take my daughter on as a charity case. Me!…veteran of a hundred campaigns to defend and support the NHS. Jesus! What a fake!’
‘You’re just a father trying to do his best for his daughter,’ said Kate softly. ‘There’s no shame in that.’
And a discussion early in the book about public care and private health care as two tiers of transplant availability lays the groundwork for highlighting these inequities.
‘Amanda might conceivably get her transplant quicker at Medic Ecosse [private hospital] than here in the unit, and in her case time is of the essence’
‘But how, if there’s an international register and a waiting list?’ asked Kate.
…’I suspect there may be several international registers, not all of them available to NHS-funded hospitals…I’m afraid that where there’s any kind of demand there’s always a supply based on currency rather than need,’ said Turner.
Without giving more away, there is a twist at the end of the novel that once again reinforces the notion that schemes to provide transplants, indeed as it is true of any scarce resource, often result in populations/patients without the means or social advantages to obtain the best care or quality of life being on the losing end of the bargain, with those having the resources benefiting from their ability to foot a bill.
Again, with transplantation, the risk and fear of exploitation recurs throughout. In many ways these narratives are calls against injustice of exploiting vulnerable populations, which are certainly at the forefront of bioethical debates, not least in regard to organ trafficking and donor incentives. One of the most powerful aspects of thinking about worst case scenarios, or the extrapolation of plausible yet horrifying possibilities, is that it engages in future bioethical brambles before they might happen. The relationship between imagination and conscience are constantly at play in fictional works, mapping unchartered territory for the orienting the moral compass. However, in the same stroke, fears are more often aggravated by these narratives more than they are allayed. No doubt something that a donor recruiter must face.
Confidentiality: a double edged sword
This book was written when the internet was emerging, and McClure does a nice job of using it and computer technology in the narrative. These days, information is supposedly even more readily available as the internet has become more ubiquitous. But McClure’s foresees freedom of information–or lack thereof– as a persistent issue in the biomedical world, and this is another important theme in the book. One of the major roadblocks to transparency in the private hospital around which the story is centered, is the claim to confidentiality.
For donor recruitment, lest we forget that is a key aspect of TransplantInformers coverage, confidentiality is a double edged sword. In Donor, the reader cannot ignore that the side of privatization, as represented by Medic Ecosse and their informational gatekeeper, the character Ingrid, constantly stressing confidentiality as a reason for providing limited information to Dunbar, who they believe is investigating them as an accountant. But it’s highly likely they suspect he is hunting for more, as Dunbar himself is well aware. It is clear the from the protagonist’s viewpoint in the book, confidentiality is a roadblock to the truth, a way to shroud dubious activity and skirt accountability.
While confidentiality can often be used in this way, it isn’t always the bad guy in donor recruitment. Donor is a novel that implores us to consider confidentiality as it is an excuse used by the privileged, or a protective shield for the corrupt. However this is not always the case for transplantation. For example, confidentiality of the identity of donor and recipient in unrelated (i.e., non-family) bone marrow transplants are protected for at least a year after the transplant. There are many reasons this is done, primarily to prevent any coercion of the donor and maintain the altruistic nature of the donation, but to also prevent feelings of remorse should a patient not survive. Part of the bargain of becoming a donor depends on your willingness to accept confidentiality, something that an investigator like Dunbar in Donor is constantly circumnavigating.
In donor recruitment, ensuring confidentiality of information is also a concern that potential donors may have. It is important to reassure donors that the information (from contact information to their genetic tissue typing to their ethnic background) will be used for only certain purposes. Some donors at drives are concerned about privacy policies, so having a clear idea of this and how to express it in a way that allays fears is important. When reading Donor, one becomes acutely aware of the many ways confidentiality can be a deflecting shield, and from the donor outreach and education perspective, it is one avenue for critically thinking about how confidentiality can be used as a maneuvering tool that cuts both ways.
So what are you waiting for? Pick up Donor and and drop off a comment here and let us know what you thought of the book.