Friday, October 14, 2011

Challenging Bioethics of Organ Transplantation: ‘The Book of Jobs’ Raises New Moral Lessons

Gods of Technology Burden Us with Tough Moral Questions

In an uncharacteristic shift from the remote third-person voice of our typical posts, I want to begin by saying that my husband strongly advised me not to write this particular blog. Observing that Steve Jobs was being lionized, almost deified, by the press and public, he warned that no good could come of advancing the view that Steve Jobs’ transplant two and a half years ago, presumably after a Whipple resection, might potentially be a waste of a perfectly good liver.

Which is why, as I type this, I am fingering my adored iPhone (which I actually consider to be a vital organ of my own) like a protective talisman. At least I’m not writing on an iPad.

Even in a society that reveres digital technology, it is rather surprising how delicately, almost timidly, the entire topic has been handled in the press, and how little editorial cross-talk there has been among bio-ethicists, medical professionals, and cultural commentators. There is clearly fear of inviting discussion about the medical or social merits of the case for transplant when the patient is one of society’s most important members as well as one of its most wealthy. In a Medscape commentary from the Cleveland Clinic, John Marshall used the topic as an opportunity to laud our growing ability to differentiate among different kinds of tumors, consigning the transplantation debate to a small parenthesis.

Transplantation, though life-saving in many circumstances, is clearly fraught with practical and ethical issues – most especially, the appropriate role of market forces in rationalizing distribution of scarce resources, and the complex social value calculus associated with selecting deserving recipients. Transplantation is a cumbersome, limited solution to grave medical problems. Thus, finding alternatives to conventional whole organ transplantation, such as promising new methods of pancreatic cancer treatment, remains a crucial and challenging frontier in medicine. Unfortunately, it is not one medical frontier but many: multiple diseases for which other curative approaches would be preferable to organ transplant, and multiple approaches to improved organ viability and transplantation success. And on the ethical side, we are still struggling to figure out who goes to the head of the line, among other equally tough questions.

A Parable of Two Innovators

Circumstances surrounding Jobs’ liver transplant and what he had to do to get one are still veiled by deft PR and legitimate patient privacy considerations. The spotlight has remained firmly fixed on Jobs’ commendable efforts to help rebalance supply and demand by calling vivid attention to the need for organs and lobbying successfully to add a donation question to the CA driver’s license application, as some other states have done. What is not happening – or, at least, not happening broadly enough and loudly enough – is the open, awkward scrutiny of transplant ethics and economics that this situation invites. Presumably, no one wants to have to state explicitly that it was more important to give Jobs a few more years of life so that he could steward the development of iPhone four and a half than to extend – potentially even save – the life of someone else. We all revere our sacred digital devices.

Meanwhile, in a parallel news story one could hardly have scripted, Ralph Steinman died during the same week of a different type of pancreatic malignancy, just days before winning the Nobel Prize (posthumously) for ground-breaking work in cancer immunology. His achievement – the discovery of dendritic cells – led to development of the first commercially available cancer vaccine, Provenge, which came to market just last year. Steinman used his intellectual resources in pursuit of personal life extension and medical advance by treating himself with his own experimental technology. Of course, his particular malignancy (a more pedestrian and more lethal form of pancreatic cancer than the type Steve Jobs had), would not have qualified him for any form of transplant – even if we admired the heroes of biomedical research half as much as we idolize wizards of technology. Jobs had a much slower-growing neuroendocrine tumor. Still, there’s no escaping the irony. And the poignancy.

Honoring Steve Jobs by Shouldering the Burdens of Innovation 

We need to see the "Story of Jobs," a man who accepted no limits, as an invitation to think and talk openly about transplantation: what’s wrong with the medical technology, what’s wrong or right with the system that distributes it, and how we need to change the world to solve these problems. That requires thoughtful discussion of what we value – on many levels.

Those who believe that ability-to-pay is an appropriate basis for distributing organs need to be prepared for the implications: Rupert Murdoch could have gamed the same system by buying up just as many “lottery tickets.” And those who prefer, instead, to use a “meritocratic” social value scale need to keep in mind that the contest is rarely between Steve Jobs and some unrepentant scoundrel. It is often between ordinary people with value only to their families and friends.

Ask most Americans to name who invented penicillin and they will not be able to tell you, but by almost any reckoning, penicillin saved more lives in a year than Apple technology will save in a decade. Even on the day the Nobel Prize was announced, most people didn’t even register the names of the people who won it or what their contributions have meant for the rest of us. Citizens of the Western World see immortality as their due and they are angry at the pharmaceutical industry in no small part because drug companies can’t ultimately fix everything that ails us, even at premium prices.

We have a right to ask whether one of the things missing from this equation is a respect for the heroism of medical research. As we face hard choices in the next decade over how to spend our money and how to harness our technological resources and ingenuity, we had better teach people whom else to lionize.

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