Disclosure and truth

Over this past weekend, on September 8, 2018, the New York Times revealed that a senior Memorial Sloan Kettering cancer doctor had not filed disclosures of financial connections to his research – even for articles in a journal of which he was at the time an editor. Sloan Kettering for its part initially said that such disclosures were the responsibility of the scientist and not of the institution, but the next day, September 9, it effectively revised this position and issued a reminder to all its staff of "do[ing] a better job" of complying with these rules.

Well, they are rules and so as a matter of general principle they should be complied with. No one is immune from financial temptation and in fact a lot of money is in play in cancer research and treatment, so there is good reason to require the disclosure of the movement of that money from corporate sponsors to individual scientists. (It has to be said, also, that the disclosure system as described by the Times does not incorporate very strict enforcement procedures; being obliged to meet disclosure rules still does not seem to be accepted by the medical community as truly integral to their work.)

But complying with these rules is not just a matter of avoiding financial problems and temptations. The fact is that a lot of medicine depends on truth. Doctors are expected to give their patients accurate statements of their situation; there may be exceptions to this rule but they are controversial exceptions, not the rule. And on the other hand patients are expected to be truthful with their doctors. That’s partly a matter of self-interest: the patient who doesn’t tell the doctor about drugs she is taking, or behaviors she’s engaged in, is risking her own health being damaged by unanticipated side-effects of either one.

But not all disclosure by patients is directly for their own good. Clinical trials carefully select the patients whom they will admit for treatment. A patient who reveals a disqualifying fact has just lost his best, possibly his only, opportunity to get an experimental treatment. Why is this sacrifice exacted? For the sake of science: the experimenters need to know who they are treating so they can measure the significance of the results that they get. 

The patient’s sacrifice is all the greater if the clinical trial design is not truly motivated just by science, but instead is part of a carefully calibrated effort to generate results that will in turn lead to the approval of some use of the experimental medication that the trial sponsor will market. Then the patient’s truth telling may in practice have as much benefit for the health care company's profits as for scientific understanding. But we live in a world where private motives of one sort or another have a lot to do with the generation of knowledge; this world is imperfect but productive, and so we apply the duty of truth to patients seeking admission to the trials that our imperfect world generates.

What we have, really, is a social contract that means to call on all participants in the health care system to act truthfully. But a social contract that only one side honors is a flawed contract. (I suspect some patients decline to honor their side of the contract too; their need is more immediate and personal than the doctors', and there must come a point at which the individual’s desire for life outweighs his or her obligations to the social contract, but in principle patients too are bound by this mutual agreement.) Physicians and patients need each other’s adherence to this contract, and that means the duty of disclosure and truth runs both ways.