Every February, to help celebrate Darwin Day, the Science section of AIPT cranks up the critical thinking for SKEPTICISM MONTH! Skepticism is an approach to evaluating claims that emphasizes evidence and applies the tools of science. All month we’ll be highlighting skepticism in pop culture, and skepticism *OF* pop culture.
Today, bioethicist Kevin T. Keith looks at a complicated, real-world issue hidden in a bombastic Marvel event.
In a prelude to Dan Slott’s Amazing Spider-Man “Clone Conspiracy” story, Peter Parker and J. Jonah Jameson clash over the safety and advisability of a novel genetic treatment from New U Technologies, and whether it should be used on Jonah’s father, Jay. New U claims they can genetically modify diseased organs and cure patients by changing their DNA in situ. In fact, New U promises not only to remove the cause of genetic disease, but to install its own vision of genetic “perfection.”
This would certainly seem like a miracle to any patient facing serious disease. But should speculative developers be prohibited from offering unproven treatments to desperate patients, or should patients have the freedom to choose even high-risk treatments of their own preference?
“The Clone Conspiracy” highlights one particular aspect (among many) of such grandiose promises to terminally ill patients: anything touted as a miracle cure, with the cachet of prominent scientists, universities, and media figures behind it, will be seized on by those in need, who do not have the expertise to evaluate it, and whose judgment is clouded by their worry and pain. A person will often choose options that are too good to be true, or are promoted only to enrich their sellers.
Jameson himself notes “there’s always a catch,” but then endorses the New U treatment, and demands it for his own father, before definitive clinical trials are finished. (The parallel to recent experience with untested, even bizarre, treatments for COVID-19, promoted by public figures with questionable motives and no scientific knowledge, is unmistakable, but the demand for unproven treatments is a familiar sight.)
This creates a conflict between the need for regulation of new treatments for safety and efficacy, and the desire of patients to try anything they think might help. Patients have the right, grounded in moral autonomy, to control their own treatment – to reject treatments offered by their clinicians, and perhaps even to select treatments that are unproven if, in their judgment, those choices best reflect their own needs and values. But the society that provides the context, funding, and resources for medical research, and operates to safeguard its citizens against common threats, has an obligation to make sure that healthcare is grounded in safe and effective science, and that clinical professionals act responsibly.
This conflict has generated the rubric of the “right to try”: the proposed moral principle that because autonomous agents have a right to control their own treatment, including the right to reject any treatment they disapprove of (a position most medical ethicists strongly endorse), they also have a right to choose any treatment at all, which is violated when the government prohibits unproven or dangerous treatments (a position most ethicists are at least somewhat skeptical of).
This argument seems an ironic reversal of much of the progress of modern medical ethics, which has sought to protect patients from abuse or manipulation by erecting strict protocols for medical research and stringent safety testing for new treatments, and by elevating “patient autonomy” to a central place in medical ethics, putting patients ahead of clinical professionals in deciding what choices will be made for them.
Now, as the “right to try,” patient autonomy is being appealed to as a moral principle allowing patients to be exposed to the kinds of risky, unproven, possibly dangerous experimental protocols it was originally intended to protect them from. Jann Bellamy at the “Science-Based Medicine” blog notes how the principle has been seized on by libertarian and right-wing activists as a tool for undermining governmental regulatory authority in general. David Gorski, also at SBM, documents how the federal right-to-try bill passed during the Trump administration essentially creates an end-run around to the FDA’s drug-safety testing process, while passing all costs and potential harm onto the patient.
Jameson wants his father (now also Peter’s uncle, after marrying his Aunt May) to try the experimental genetic-engineering protocol. Peter’s skeptical, saying, “It’s experimental, and there are good, established treatments. I just don’t want to do anything we can’t undo.” He’s urging caution, given reasonable hope with the existing treatment and unknown probability of harm from the new one.
Jameson is more concerned with what will happen if they don’t try something new: “I can’t do this anymore! . . . Can’t you see you’re prolonging his suffering? And torturing your own aunt?” Jameson is overwhelmed by the suffering the patient is already undergoing, grasping at anything that will offer a way out, implicitly ignoring the probability of harm from an incompletely tested treatment.
Jay is conscious and mentally competent, so the final call is his to make. The medical establishment has not proven the safety of the new treatment, and thus not endorsed it as valid. If Jay wants to roll the dice with this uncertainty, it has to be not on grounds of proven medical knowledge, but of his right to exercise his autonomy in opposition to safety protocols and expert opinion.
In the end, Jay, influenced by Peter’s scientific caution, rejects the unverified treatment, accepting the fact that his prognosis with conventional treatment is still poor. But we find out later in “The Clone Conspiracy” that everyone who does take New U’s experimental treatment turns into zombie-like creatures, the result of the Carrion virus that also infects them. Their “right to try” led them into unforeseen side effects, exactly the thing standard testing and safety protocols are intended to prevent. Like zombies.
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