Gurney: Thank you, David. So we had the honor of sitting in on each of the panels and thought we’d come back and just have a very short discussion so that everybody could gain from the collective wisdom of each of the panels and some of the stories that we found pretty interesting. So thank you to the panelists for letting us sit in the front rows and frantically scribe our notes as we were doing it.
I’ll start with the policy panel. And I thought it was a very well constructed panel, it was super interesting because we had two test cases that we started with. Question one is, if you design and create a glowing plant, so a plant that glows, that’s all it does, what does it take to get that approved for sale in the US? What is it going to take to make that happen?
The second test case was, if you want to create a lab that people can drop in, amateurs can drop in and just do some genetic engineering on the side when they get home from work, what does it take to get that regulated? Is that allowed? Is it legal and what happens?
So two really interesting test cases. I think the conclusions that we came up with from the panel were, number one, regulations are pervasive, you know, as you said in biotechnology everything is regulated and there was a real alphabet soup. It was pretty funny, the moderator had to stop her panelists every two seconds and say, “What does that acronym stand for? And what does that acronym stand for? And which agency is that? And which agency is that?” So it’s extremely complex and it’s obviously not surprising the regulations, which sometimes have been designed 20 years ago or 30 years ago, were not designed to handle these kinds of questions.
At the same time we talked about how regulations are important. I mean, an unregulated world, as nice it would be if you’re the one being regulated is actually a pretty scary place to be. The regulations do exist for a reason and when they’re especially difficult it’s usually because of some glitch that’s happened.
We talked about the thalidomide glitch or hip implants or every time that there are problems everyone then points to the regulations and say they need to be stricter. So there really is this tension in the definition and creation of the regulations.
So regulations are pervasive, regulations are important, and the third big take away in the session, which was kind of on an optimistic tone for us here in the U.S., is the U.S. agencies are actually doing quite a good job of adapting to all of these new technologies and making things work.
Yes, the regulations are pervasive and they’re hard, but most of the agencies are actually working with the innovators to educate them about the regulatory pathways, what they need to do, and how to get these products on the market, which compares very favorably with places elsewhere in the world. There’s the example of the glowing plants, to sell those in Europe is going to require an act of Parliament or a parliamentary vote to actually get those approved. So talk about a high regulatory burden.
And I think that the last set of points that I just thought were super interesting, I was taking notes, is we had a wonderful representative on the panel from the FBI who’s a kind of a liaison to these groups—that was Ed, thank you for being on the panel—was talking about the types of things that don’t get enough attention in terms of what should be scaring people.
We often go immediately to, well there’s pathogens and there’s health risks of genetic engineering and there’s privacy concerns with a lot of these different areas. But then he took it to the next level to some really scary things like, if you’ve got biomonitoring devices that are keeping track of all of your metrics the cloud is going to know if you’re having an affair, the cloud is going to know if you’re doing bad things, and that mean that there’s extortion risk. You never know if you’re going to get blackmailed or extorted based on your biodata that’s sitting there. The idea of designer yeasts that can create heroin or other drugs just by adding sugar to them is kind of this wild idea that you could imagine just could explode.
So if you ever want to be scared and intimidated about what the use of these technologies actually could be used for you should have a long conversation with Ed. So anyway, that was the gist of our conversation on the policy, and to continue the food puns, we want to give you a bit of a flavor for what we heard and that’s what we heard in the first session.
Leclerc: Thank you, Paul. So my panel was around science, fear, and the communication game. So it closely related to yours in a sense. We really talked about the tension between the complexity of scientific communication and relatively lack of education of the general public, particularly on biotech, and the risk that it entails.
So all of the debate and in the panel actually we spent quite a bit of time talking about the GMO debacle as well as the vaccine issues and sort of what’s going on with vaccines in the US today. And on the GMO debacle we sort of, one panelist actually sort of rightly highlighted the George Church saying, “Listen, we could have done a better job and we could have gone to battle, it would be better that we did,” to explain actually the risks and the benefits of GMO.
In the vaccine debate, and we talked quite a bit about it as well, we probably know that 99% of the scientific community is actually pro-vaccine. Even then the general public seems to have, at least a certain proportion of the general public is actually very reluctant to use vaccine today. And the discussion went on to sort of highlight how easy it is to manipulate the fear of general public on this concept. Even though, we should say actually, sort of when we actually polled people typically on science people actually thought very positive about science and about scientific change in general, but as soon as you highlight the few risks you can actually sort of easily manipulate them.
So we ended up with five points to highlight in terms of how to win the battle or at least actually mitigate some of the effects of miscommunication.
- One, was obviously around a source of information and the fact that if you let the big companies quote, unquote sort of manage the communication typically that will actually elicit some resistance from the public and so we need to find actually a better source for the information.
- The second one, was the notion of a balanced perspective and people talked about highlighting the benefits as well as of course the risks and being very open about it from the get go.
- Third, was there were actually sort of a lot of energy from the audience on education and how to educate the public starting in preschool and all the way to university.
- And fourth, was actually this notion of the power of emotions. Genetically modified is not necessarily actually something that actually sort of appeals to people and so there’s this notion of thinking about what words are you going to use, what branding or how you’re going to essentially elicit the right emotions when you talk about technology is going to be actually sort of quite important.
- And finally, actually sort of we finished on a lighter note saying we’re still missing the Steve Jobs of biotech. Someone who can actually make tech more accessible to people. Biotech is not there yet and so we’re still looking for that illusive Steve Jobs I guess.
Kulkarni: All right, thanks, Olivier. Hi everyone, my name is Sam Kulkarni. I’m a partner at McKinsey, do a lot of work in the healthcare space. So I sat in on the panel, “Who Owns Your Genetic Data” and it was a wonderful rich discussion. And I’m not going to pretend to be able to encapsulate all the richness in five minutes here so please go and watch the videos.I think they’re going to be uploaded later of the entire panel but let me try to at least give you a gist of that panel.
To me it felt like “Fifty Shades of Grey.” The question of who owns your genetic data is not one black and white question and when I sat in on the panel I realized the richness of that question. What kind of data? Is it all full genome data? Is it SNIP data? Who sees the data? Is it for research purposes? Is it for some other purpose? Is it identified, not identified? And I learned a new word, deidentified.
So there’s many different layers of that answer and there’s no straight answer to the question of who owns your genetic data. But what the panel did do—I think I was expecting old school western standoff with Hank and the rest of the panel in terms of who should actually own the data or not.
I think the panel agreed on one thing, which is, there’s a lot of benefit from taking that data and putting it out there for research. In fact, one of the panelists had a child who had a very rare disease who has tremendously benefited from having that data out there for researchers to actually analyze and come up with therapies for it. So the benefit is there. It’s there for cystic fibrosis, it’s there for a number of rare diseases and other major diseases.
The question is, “Does the patient own the data?” One of the examples that Hank used was, so if you have data and you have a twin now do you own your twin’s genetic data because it’s the same data? So I think there’s no easy answer or policy that’s going to say this is what genetic data should be, where it should be owned, or where it should be kept, but I think what I was struck by was what Elissa Levin, who’s a genetic counselor, who said, “How do you responsibly share data?” How do you responsibly share data?
And this has a lot of different ways you can do it. One, is do you have counselors who explain to consumers and patients what the data means? What does it mean if your risk from a BRCA mutation makes you at a 12% risk versus 11% risk? What should you do? Should you go get a mastectomy or not, right?
Those are important decisions for these consumers and patients, and you have to responsibly explain to them what the data means. You have to give them the choice that’s more than a yes, no. In fact, when I got the new IOS on my Apple I was so happy to see that some apps I can say, “Only track GPS when I use the app.” Before it was yes and no and here you need 20 different layers, right? Use my data for research purposes? Great. Use my data for other big companies? Maybe not, right?
As a consumer you need to have that choice of what happens with your data and that’s an important thing that technology can enable, policy can enable, and communication can enable.
And lastly, one of the other panelists said, which is, “Let’s spread the word out there. Let’s get Hollywood involved, let’s get the media involved, let’s get the intelligent press involved. Let’s create a more engaged and knowledgeable genetic consumer and that’s what will solve the problem.” Great panel, please watch the video. Thank you.