While I was aghast earlier this week that the White House struggled over whether to fly the flag at half-mast or full for the death of John McCain, and relieved that it was still the American flag, I distracted myself from the drama in Washington with other news:
Item: In Europe, there were 5,000 cases of the measles in all of 2016, 24,000 in 2017, and already 41,000 halfway through 2018, including 37 deaths, according to the World Health Organization. Globally, measles remains a leading cause of death among young children even though a safe and cost-effective vaccine is available.
Item: In the bizarre case of a convicted murdered claiming his victim wouldn’t have died had he stayed on life support, the Georgia Supreme Court rejected that argument because the patient “was basically brain dead.” [PDF]
Item: Twenty-five years later, gene therapy finally got a common-sense definition: “the intentional, expected permanent, and specific alteration of the DNA sequence of the cellular genome, for a clinical purpose.”
Bioethicists, policymakers, and clinicians tend not to lump brain death, gene therapy and the anti-vaccine movement together. And why should they? Though fate management is central to each, they are perplexing enough to the public (i.e. me) when considered separately.
And yet I conflate them, and there are some reasons why. The great promise of gene therapy is that genetic diseases can be treated and possibly eliminated, addressing the two most desirable patient outcomes: lessening suffering and saving lives.
These are also at the heart of the quandary over whether and how long to sustain a brain-dead patient, a controversy still warm to the touch half a century after it was declared settled (note the wiggle room in the Georgia court’s use of “basically”). And so effective was the vaccine for measles — a disease known for suffering and death, especially among children — that it effectively eliminated both the disease and memory of it.
But what really connects the three for me is the state of public trust and the profound challenge of winning it and keeping it.
Were there adequate trust in verifiably trustworthy science, measles would not be making a comeback, neither globally nor in a movie theater near you. There would be broader faith in the irreversibility of a brain-death diagnosis. And who knows what “anti-vaxxers” might have in store for gene therapy’s unintended consequences.
This is why the patient-centered movement in healthcare, research, and the translational space between them may hold more promise than even the most revolutionary gene therapy. If there’s a cure for distrust, it’s in engagement of the extended patient community.
“Trust imparts intrinsic value to the patient-physician relationship, but trust is also instrumentally valuable in health care, as it is critical to patients’ willingness to seek care, share sensitive information, and follow physicians’ recommendations,” Emily Largent wrote in the American Journal of Bioethics in 2015. “Likewise, trust is crucial for the proper functioning of clinical research. Relationships suffer when trust is damaged, and once damaged, trust is difficult to repair.”
Who do you trust to stick a needle in your kid’s arm and say it’s good for them? Who do you trust to determine when your loved one is irreversibly dying, when you can see the chest rising and falling? And who do you trust to manipulate your child’s DNA?
Measles may be a killer, but public distrust is complicit. And while scientists generally aren’t in the business of winning public trust, they’re increasingly in the business of losing it.
So it was notable that the Nuffield Council’s recent report on gene editing called for greater involvement by researchers in public engagement. For that purpose, the new definition for gene therapy is timely and welcome. Especially when gene therapy confronts its Andrew Wakefield, which seems only a matter of time.
The good news is that there are models for doctors and researchers who see the importance of engagement but are not naturally inclined to explain risks, benefits, or lengthy acronyms to the unruly masses.
Neil DeGrasse Tyson, who has been at it for some time, has impressively broadened his engagement to Twitter. He said it well in a recent tweet (@neiltyson): “I’m okay with a US Space Force. But what we need most is a Truth Force — one that defends against all enemies of accurate information, both foreign & domestic.”
Another model is Jen Gunter (@drjengunter), a gynecologist and fierce advocate for women’s health, reproductive and otherwise, who notably has provided consistent pushback to health huckster Gwyneth Paltrow (speaking truth to Goop, as it were).
And then there is Gunter’s fellow Canadian Timothy Caulfield, who will be bringing his ever-expanding brand of pushback and public advocacy for research to Harvard Law School on Sept. 10.
Caulfield’s books include “Is Gwyneth Paltrow Wrong About Everything?” His two-seasons-old documentary series “A User’s Guide to Cheating Death” is finding a new audience on Netflix.
And @caulfieldtim is especially adept at setting the record straight in just a few words on Twitter.
If you need more convincing, scroll the Twitter hashtags #GoScience and #PatientEngagement.
The public will reward your engagement. Trust me.