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Genetic engineering and gene manipulation concept. Hand is replacing part of a DNA molecule.

Gene Therapy: IT Meets Medicine, But Who Is In Charge?

A biotechnology CEO would like to see patients have more power in determining advanced treatments

Jay Richards talked recently with Matt Scholz, Founder & CEO of Oisín Biotechnologies, about the challenges and promises of the information theory of biotech, especially as related to medicine:

The panel in which Scholz participated at COSM 2019 focused on how artificial intelligence can make a difference in medicine:

From the interview:

Jay Richards: So how would you distill this panel? It was you and Babak Parviz, formerly of Google Glass and now from Amazon (and formerly Google Glass) and Lindy Fishburne, who’s on the funding side of information technology and biology.

Matt Scholz: The panel was put together ranging from the computational side of it to the actual therapeutic side and finance. So I think that made it a pretty interesting conversation really, because, to a great extent we’re working towards the same goals, but from very different angles.

Scholz spoke about his work in gene therapy:

Matt Scholz: What I’m working on is, in some respects, the most literal amalgamation of information in life. Like we’re actually rewriting information in life; it’s gene therapy. But for the most part, I think the expertise on information and medicine is more on how do you analyze conditions and symptoms, make diagnoses, predict outcomes, that kind of thing.

Note: From the National Institutes of Heath: “Gene therapy is an experimental technique that uses genes to treat or prevent disease. In the future, this technique may allow doctors to treat a disorder by inserting a gene into a patient’s cells instead of using drugs or surgery. Researchers are testing several approaches to gene therapy, including:

▸ Replacing a mutated gene that causes disease with a healthy copy of the gene.

▸ Inactivating, or “knocking out,” a mutated gene that is functioning improperly.

▸ Introducing a new gene into the body to help fight a disease.

Although gene therapy is a promising treatment option for a number of diseases (including inherited disorders, some types of cancer, and certain viral infections), the technique remains risky and is still under study to make sure that it will be safe and effective. Gene therapy is currently being tested only for diseases that have no other cures.

Jay Richards: A lot of people ask questions about the problems of the regulatory regime in dealing with some of this new stuff. What’s your opinion in terms of, if there was a single primary impediment to real breakthroughs in this area, is it regulation? Is it just the toughness of the subject? Is it something else?

Matt Scholz: Well, I think the regulation in medicine is considerable both in the time and expense it takes, but I don’t think it’s the primary impediment to anything. In fact, I think particularly in gene therapy, the regulators have been very responsive to changes in technology.

Note: Gene therapy has shown some success with muscular dystrophy (NPR, July 27, 2020), for example, and is an approved treatment for thalassemia (LaBiotech.eu, April 6, 2019). On the other hand, a gene therapy for treatment of hemophilia has been delayed, following questions around how long it lasts (STAT, August 20, 2020) The FDA has been expecting a surge of gene therapy trials (Pharmaceutical Technology, February 5, 2019).

Matt Scholz: Building new treatments in biology is the science itself is hard and the tools we use to build it are clumsy. And so for most of human history, we use mashed up plants to treat diseases, and moving to building viruses and ex vivo cell therapies and manipulating DNA is largely uncharted territory. The regulators have been, I’d say, doing an admirable job really, trying to stay on top of those changes and interact with people building them. With that said, obviously, if you want to have a system that takes you a decade to get a drug approved…

Jay Richards: That’s what we have.

Matt Scholz: … it will cost time and money. And I think there’s great conversations that could be had about how we weigh the risk of a drug versus the risk of a disease. And the balance we’ve struck gives us the system we have today. And it’s pretty comfortable to think, “Okay, well, there’s smart people at the FDA who are making sure I don’t get things that are dangerous, but if you’re dying of a disease…

Jay Richards: The cost benefit changes.

Matt Scholz: Yeah, it’s very different. And I think it may be in some respects, less of what could be done about the regulatory environment as to what can be done to empower the patient. Because right now, the one person who has no say in healthcare is the patient. The bottom of the totem pole.

Jay Richards: It’s the same thing with the economics of healthcare. It’s a third-party payer problem, but if you’re a patient, you actually don’t know what the price of the services that you’re getting is, that’s the problem.

Matt Scholz: It’s totally wild, and I think the patient should have the right to be the arbitrator of what goes into their body and not just be subject to the winds of the system. It shouldn’t be that what the doctor says, the insurance company says, or even what the FDA says in that respect.

It’s there for a reason. We know why these things exist, but it’s easy to imagine circumstances where you would have a very different perspective on risk and reward. And I would love to see the patients get more power.

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Gene Therapy: IT Meets Medicine, But Who Is In Charge?