12 Aug What’s a SynBio Public Policy You Wish Existed?

I recently applied to a synthetic biology public policy fellowship to better understand how to structure policies and implement them in the synthetic biology sector.

Turns out, I have a very strong opinion on a public policy that I’d love to come into effect. It concerns patient’s access to affordable new-age therapies like gene therapies.

I’m sharing the (slightly) modified short essay that I submitted as part of my application: to document my thoughts but also to encourage discussion/debate on this policy (e.g. its feasibility). Questions and opposing points are always welcome! The more questions I get asked, the more I am able to refine my idea.

But before we get to my essay, tell me, what’s a synbio public policy that you would like to see in the world?

SynBio Public Policy Essay

In response to being asked how they priced a particular gene therapy reducing loss of eyesight that costs $1 mil, the CEO of Spark Therapeutics responded saying:

The above answer makes me terrified about what it means for the larger public, if we don’t focus on accessibility and affordability policies in parallel to health innovations by breakthrough technologies like CRISPR.

Everyone, even if they have a very limited understanding of this technology and its applications, has an opinion on CRISPR. That’s the power of putting the words ‘gene’ and ‘editing’ together. And CRISPR is going to fuel the synbio revolution further.

Emmanuelle Charpentier and Jennifer Doudna’s Nobel Prize winning work on CRISPR is nothing short of monumental and these two scientists will go down in the biology history books alongside greats like Franklin, Avery, Watson and Crick. However, their innovation runs the risk of never reaching large swathes of society by virtue of the fact that these are very likely going to be not covered by insurance and/or they come at a price tag of $1-2 million a dose.

Whether we are ready for it or not, the wildest innovations of the decade will be made using synbio, and hence, there are many ethical debates currently. There are many parts of society that are hesitant to synbio, but in my view, the root fear of all these concerns (e.g. playing god, being unnatural, cosmetic applications like ‘designer babies’), is not about human power, nefarious leaders or immorality. It’s about accessibility.

The root fear and hesitancy is that if all the utopian applications promised by synbio were invented, it would not reach most people. This fundamental fear is the biggest concern that I have regarding synbio, because not addressing this means this field has the ability to exasperate existing inequalities.

The issues we faced during COVID regarding patents, price hikes, miscommunication and who got access to vaccines first is a prime example of what could happen with synbio/CRISPR innovations. Especially if public funding is used to drive these innovations, patients should be able to share in the upside.

Hence the fellowship topic I would like to pursue is: How do we create a public policy that ensures the public has access to affordable new-age therapies (driven by CRISPR)?

In response to Spark’s CEO’s initial question at the start of this essay, I do have an answer.
The value of sight in a child is not $1mil dollars. It’s every single cent, tear, sweat and blood that a parent has to offer to ensure their loved ones live a healthy life.

Big Pharma plays a key role in accelerating innovation, but we cannot accept any kind of predatory and exclusionary behaviour, especially in the name of science, innovation and business.

This is why this public policy topic is important to me. And why it should be important to you too.