I love the spectacular symbiosis of my vegetable garden as harvest time approaches. Beanstalks spiral up cornstalks, their tendrils teasing nearby tomato…
A few weeks ago, I noticed a surprising metric when posting my weekly DNA Science blog – at year’s end, I’d hit #500!
That got me thinking. Looking back, which blog post was the most important? The answer came to me quickly – but it’s not what I would have expected when I began more than a decade ago.
The Birth of DNA Science
When St. Martin’s Press was about to publish my book about gene therapy in 2012, my agent urged me to start blogging. I needed to widen my audience beyond college students forced to buy my textbooks and readers of the articles I’d been cranking out since the 1980s.
The book that kickstarted DNA Science was The Forever Fix: Gene Therapy and the Boy Who Saved It. It’s a history of gene therapy told through the voices of the patients, families, researchers, and clinicians behind the first FDA approvals, which didn’t come until 2017.
I launched a website and blog, “Genetic Linkage,” through the Author’s Guild. Soon, an editor at Public Library of Science asked me to post Genetic Linkage at PLoS. We renamed it DNA Science.
Before 2020, many posts continued chronicling the experiences of families battling single-gene diseases. I had no idea I’d abruptly begin writing almost exclusively about a new infectious disease that would soon take over the world. COVID posts number more than 100.
I am grateful to PLoS for giving me this voice for more than a decade, and free reign to cover anything that even remotely involves DNA or RNA.
Was I Overly Hopeful About Gene Therapy?
In the final chapter of the Forever Fix I was wrong to predict that gene therapy would have a huge impact on health care, and expand rapidly beyond the rare disease world. FDA has approved only a handful. The field has certainly had its ups and downs.
People with the form of retinal blindness at the center of the Forever Fix can see thanks to the gene therapy Luxturna, sometimes spectacularly so. Topical gene therapy for dystrophic epidermolysis bullosa/, a severe skin-peeling disease of children, works, as does gene therapy to treat a condition that affects the brain’s white matter, metachromatic leukodystrophy.
But gene therapy for Duchenne muscular dystrophy has shown only tiny improvements, and one boy in a clinical trial recently died, although deaths in clinical trials can be due to the condition being treated.
Results can vary. Gene therapy approved in 2019 to treat spinal muscular atrophy has had spectacular success in enabling some children to move – untreated, most die in infancy. A video of a little girl dancing after receiving Zolgensma made headlines – her sibling had died very young of the disease. More recently, an infant who had received the $2.25 million one-and-done gene therapy in 2021, by eight months of age, could only hold his head up for a few seconds. Another gene therapy, Glybera to treat a pancreatic condition, although successful, failed in Europe because it was simply too expensive.
Gene therapy delivers functioning gene copies – it doesn’t replace mutations. Ironically, the year I wrote The Forever Fix, 2012, CRISPR was invented, a technology that can swap in a new version of a gene, ousting the malfunctioning one. (See A Conversation with CRISPR-cas9 Inventors Charpentier and Doudna). FDA just approved the first CRISPR-based gene treatment, for sickle cell disease.
And Then Came COVID
Infectious diseases involve genetics too, because they introduce foreign, or “non-self,” genomes into our bodies – even those as tiny as the 30,000 or so RNA bases of the genome of SARS-CoV-2, the virus that causes COVID.
The first DNA Science COVID post was from January 23, 2020: The Wuhan Coronavirus Inspires a Look Back at the Discovery of Viruses. As the pandemic unfurled and we learned more about the changeling coronavirus, DNA Science revisited the history of viral diseases often. My third COVID article was perhaps the most cited, from February 20 of that first year, COVID-19-vaccine-will-close-in-on-the-spikes. I’d return to the topic of vaccines often, as for many people like myself they spelled a profound relief, while angering others, for reasons not apparently based on understanding the science.
Covering the news changed, as COVID revved things up. Traditional scientific publishing gave way to a new legitimacy for what we once called “preprints,” and many journalists turned to medRxiv for the latest health-related findings and bioRxiv for more science-based reports. But as one-on-one interviews with news sources became impossible – everyone was simply too busy – zooms for journalists featuring a diversity of experts became vital. And as the virus mutated, I was thankful for my background in genetics.
At first, Conversations with Dr. (Howard) Bauchner, then editor of JAMA, was my favorite zoom. I will never forget his interview in March 2020 with Maurizio Cecconi, of Humanitas University in Milan. He showed a video of hearses, so many hearses, moving down a main thoroughfare. At that time, we in the U.S. still had a sense of “that can’t happen here.” But of course, it did.
Dr. Bauchner interviewed Rochelle Walensky before she headed the CDC and gave Anthony Fauci a place to speak as freely as was possible under the constraints of the Trump administration. Alas, Dr. Bauchner was canned for approving of, and commenting on, JAMA’s publication of an unfortunate essay that denied the existence of racism in health care.
Fortunately, the Massachusetts Consortium on Pathogen Readiness (aka MassCPR) formed in March 2020. It provided a compelling monthly platform featuring experts from the eclectic disciplines that had come together to combat COVID.
My COVID posts focused mostly on the science. But the pandemic became personal when I tried to convince a new friend to get vaccinated – and failed. She died terribly, in the hospital, two weeks after she got sick. She inspired Sandy from the Mountains Dies, Leaving a Message to the Unvaxxed, from December 23, 2021.
Dissecting the Motives Behind Vaccine Refusal
Sandy’s death two years ago from preventable COVID led me to reprint what I think is the most important DNA Science post, from 2014: Vaccine Memories: From Polio to Autism. Perhaps one reason for vaccine hesitancy today is that many people have no direct experience with the vaccine successes of the past – ironically, because the diseases they conquered are no longer here. This is the case for “the diseases of childhood.”
My younger sister and I straddled the introduction of a vaccine against measles. I was very sick for a month. Three years later, my sister, shrieking, received shots of the new vaccine in both arms. She never got measles. We also received polio vaccines, much to the relief of our parents who recalled the terror of that disease in the 1950s. First came injections, then pink-stained sugar cubes handed out in the elementary school cafeteria. I remember lining up to get it.
I suffered through measles, mumps, rubella, and chickenpox. My three daughters didn’t, thanks to vaccines. And we’ve all had flu shots. Now vaccines protect against a new roster of pathogens: HPV, RSV, hepatitis, shingles, and of course COVID.
What is an Acceptable Risk for Vaccination?
Vaccine hesitancy is increasing, despite past successes. According to CDC Vaccination Trends from December 15:
“The percent of the population reporting receipt of the updated 2023-24 COVID-19 vaccine is 7.8% for children and 18.3% for adults, including 37.4% among adults age 65+.”
For flu, it’s 43.3% for kids and 42.2% for adults, and just under 70% for those 65+. RSV uptake is 17% among those over 60.
Reasons to refuse vaccines range from a health-related contraindication, misinformation, fear, inconvenience, and thinking vaccines aren’t necessary for a non-life-threatening infection. That might be the case for COVID, which has mellowed as new mutations have merged into new viral variants that cause much less severe symptoms for most people. The need for a vaccine was more urgent when leaving one’s home could lead to miserable death in an ICU.
Back in the early days of COVID, the theoretical concept of herd immunity as an altruistic reason to be vaccinated – to protect others – arose, but never had a chance. It soon became clear that too many people would refuse to be vaccinated or take other preventive measures, like wearing masks, for it to even be within reach. Ever.
Then, inevitably, as more people were vaccinated, adverse effects began to be reported – as will happen with any medical intervention. And that’s when the idea of acceptable risk became important.
The first serious adverse effects associated with the mRNA-based COVID vaccines were two types of heart-related inflammation, mostly among young men. Myocarditis affects the heart muscle and pericarditis the outer lining. Both cause shortness of breath, chest pain, and fluttering, fast, or pounding heartbeat. After millions of people had received COVID vaccines, the incidence of myocarditis was found to be 0.001% and pericarditis 0.0004%.
A second type of serious adverse effect, associated with COVID vaccines that use adenovirus as the vector, is cerebral venous sinus thrombosis with thrombocytopenia – a blood clot in the brain. A study in Stroke identified the condition in 22 of 91,727 patients – that’s 0.02 percent.
For me, these risks of adverse effects associated with COVID vaccines are low enough, and the risks of becoming very ill from COVID because of my age high enough, to justify continuing to receive COVID vaccines. But that’s just me. The choice to be or not to be vaccinated should remain up to the individual.
If DNA Science is around for another decade, I hope I will not have to report on another pandemic!