Is Liz Parrish the world’s most genetically modified person? Why it might not be such a good thing

“Joining a long list of illustrious mavericks in medicine, Liz took matters into her own hands when she became the first person to take gene therapy to treat biological aging.

In fact, she took two gene therapies in 2015: follistatin and telomerase. The former to address sarcopenia (age-related muscular atrophy) and the latter to lengthen her telomeres.”

Follistatin and telomerase gene therapies are not proven to work for any particular desired outcome or to be safe. I’m not convinced either of these is a wise way to go.

For instance, as we’ve talked before here on The Niche, getting extra telomerase could be risky. Long telomeres are not necessarily better. Cancer cells have long telomeres, which can also be associated with other health issues. Yes, telomeres tend to get shorter as we age, but adding in more telomerase is not necessarily a safe or effective way to counter that.

Biomedical rebel?

In a video (above) related to the most genetically-modified person claim, she downplays the possible cancer connection and notes a PNAS paper where they didn’t see increased risk of cancer from telomerase. Still, I don’t feel very reassured by that.

The issue of cost also came up in the video, which remains a big challenge for gene therapies, whether inside or outside of trials.

Parrish is clearly a very bright person and compelling speaker who comes off as genuine. She notes her inspiration in part comes from her son having Type 1 diabetes.

In the video, she also invokes the idea of fighting for biological freedom, which can be a powerful idea. It’s possible that many people will see her as a brave, biomedical maverick or rebel who can shake things up and catalyze needed change.

Klotho and PGC-1α gene therapies noted by BioViva

BioViva adds more info on two other gene therapies she reportedly received:

“Parrish also took Klotho and PGC-1α gene therapies in 2020.

Klotho, the queen of anti-aging proteins, is pivotal to maintaining mineral balance, warding off vascular calcification, and protecting our hearts. Reduced levels contribute to accelerated aging and kidney disease. It also shows tremendous promise in neuroprotection and cognitive enhancement.”

Here again, in my view, there’s a lack of solid evidence that Klotho or PGC1α therapies would be safe and effective for human anti-aging or other goals. While there are lots of papers on Klotho and aging on PubMed, that database only lists one Klotho clinical trial paper. It does not seem that encouraging to me.

Parish and BioViva make various statements about these four gene therapies, like claiming a boost in IQ points. How would that work? Does the gene therapy get into the brain? If so, how?

What are these gene therapies exactly?

More broadly, what are the nitty-gritty details about the vectors and other elements of these gene therapies?

It’s not so clear.

BioViva does talk quite a bit about its CMV gene delivery approach. Did Parrish receive gene therapies based on some novel CMV approach? CMV is a very strong promoter system for high expression of genes in cells.

In my lab, if we introduce a gene expression plasmid with a CMV promoter into cells in a dish, those cells will often overexpress the resulting protein, sometimes hundreds-of-times higher than endogenous expression.

If CMV was used for these DIY gene therapies outside of clinical trials, was that safe? How did they ensure an optimum amount of each gene was expressed and in the desired cell type? Too much of any particular gene could easily be a bad thing for one’s health.

More claims on GM results for Liz Parrish

BioViva makes more claims on the results from GMs:

“Her C-reactive protein levels are extremely low, an excellent indicator of reduced inflammation. Her post-treatment blood glucose control is exemplary.

This is partially due to the follistatin gene therapy and an increase in muscle mass. The MRI below shows this has occurred alongside a reduction in marbling (fat) in her thighs. This enhancement is more than cosmetic; it has lastingly uplifted her metabolic health.

Before treatment her age — as measured by her telomere length — was 62. She was 45.”

I’m also skeptical of measuring age based on telomere length.

Gene therapies outside of clinical trials are extremely risky

Could these approaches safely do helpful things for other people? It’s too early to say. I feel like these approaches have a higher chance of doing harm than good.

Taking this all together, even if Parrish is the world’s most GM person, is that a good thing for her? Is it a positive for the world? For the gene editing and gene therapy research arenas?

Is BioViva doing regulator-approved trials? A search for BioViva on Clinicaltrials.gov yielded no results. I reached out to Parrish and BioViva to ask some questions on the claims but so far have not heard back. If I do, I’ll give an update.

More experimental gene therapy in people outside of trials is extremely risky with little upside in my view. Yes, even approved gene therapy trials can be very risky and a few people have died, but some have also been concretely helped. Doing human genetic modification outside of trials greatly ups the risks. I’m also concerned about the more recent development of clinics selling unproven RNA therapies. In addition, there have been potential connections between DIY gene therapies and stem cell clinics.

In the much larger and older, unproven stem cell and regenerative medicine space, we have already seen many people be severely injured or even die from unproven approaches. These clinics also often invoke biomedical freedom.

Overall, I believe the risks from unproven gene therapies are at least as high or higher than unproven cells.