Ethical frameworks for hgp-write
Jonathan D. Moreno, bioethicist
Barbara Evans, University of Houston Law Center
I have an important matter that we need to resolve today. Is the W in GP-write, is it capitalized or not? Seems like the answer is no.
I teach medical ethics and history of science. I had a kind of a historical perspective I wanted to bring. We had the March for Science a couple of weeks ago. I asked myself, since I teach history of science, could this have happened a couple of years ago? I think 50 years ago it would have been unthinkable. If you said science to an American 50 years ago, they would have said the space program. My first search result looking this up was a Soviet stamp from 1957... the French had a postage stamp the same year.
We were thinking about driverless cars in Popular Science, but they were on rails. We were also thinking about Casia and the moons. Ten years later, in 1977, where was science according to google? There was a confusing period-- which direction. I do this once in a while.
What's happened in the last 50 years that we need to pay attention to in a project like gp-write? Conservative trust in science has plummetted since 1974, this only goes up to 2010 but no doubt these lines have continued. A project like gp-write needs to pay attention to this I am not telling you anything you don't know.
I was not at the first meeting, but there was a lot of ethics at the first meeting. There's a lot of scientific efforts that-- there's a lot that have not gained the trust of the public. We talk about this in my classes. A lot of it is not about science, but rather mistrust in scientists. A lot of people have never seen so many scientists in one place, except at the march.
GP-write publication had a good summary. I think the science article was pretty good. Thinking about a better future-- I think a lot of people can get behind this, I think this is a good start. I do have a couple of suggestions. These are questions raised by some of the critics from a year and half ago. I think GP-write should consider some of these or perhaps in public engagement or ethics.
What is a human genome? There are disagreements among scientists about whether we have a human genome. The published reference genome has 100s of gaps, there are several individuals as George just said, we have not published a single human genome without gaps, there's a reasonable question there. What are the benefits of synthesizing a human genome? Should the priority be given to less controversial genomes first? Let's not rush it. The cell lines only principle is a good concept, it should be re-affirmed by a panel for GP-write.
Does this policy only to human or are we going to make synthetic genomes for synthetic mmamals?
No artificial deadlines: let's do it naturally, let's see what unfolds over the next few years.
Bioterrorism is not something we talk about in a project like this. I think it's important. I read this guy's book, Regenesis, by George, and that's where he said that. I take that seriously. There are dual use research concern. Biosafety as bioethics. We do have to think abou this going forward. DURC-- dual use research concern. This tends to be top-down-- the way that the DURC--... that's not the way that a project like GP-write should go. We need a bottom-up approach, like how the Europeans and in particular the Germans do. I know this will freakout the scientists that are worried about it undermining the progress of science. The public will demand that there be a great consideration at each step of the way in a project like this.
The gp-write panels should specify a bottom-up policy.
There needs to be a regulator review maybe one of the first things to do for the project is to look at the landscape like the weapons conventions and so on, to see what's missed and what's the downstream risks, and how to make positive contributions to fill in some of the blanks. There are lots of blanks in the field such as neuroscience.
We need to think about new ways of doing public engagement. It's annoying, it takes time away from the science. It's just something we have to do. We have to do it in the next year, for the aniverssary of Frankenstein perhaps.. journalists might pick up on this, and it's the 200th anniversary of Frankenstein.
Q&A
Q: Is there precedent in history for cultural and social ascent to any kind of technological project in some kind of formal a priori way?
A: Good question. Do you have a semester? It takes a while for people to adjust to new ideas.
Q: Advice for public engagement?
A: Next question. I think Barbara Evans will be the person to ask that question to. There are ways of doing this. There are lots of models out there. I think people being able to see the scientists themselves on social media talking about their work-- it's a venue we have now, that we did not have 10 years ago, we should take advantage of it. We should use social media, that would be really good. I know some people that can help with that.
Q: Why do you think public dialog is a pain? This is a scientific community-- it's the responsibility of all scientist to explain and engage. We are publicly funded.
A: Scientists sometimes don't want to leave the laboratory or talk in public. Pardon the facetious approach. We are not Francis Bacon. It comes with the territory, thank you.
Barbara Evans
Who is ELSI? For those of you who don't know-- this is an iconic milk advertisement image. Knowing the importance of IP rights in this space, I want to make this image use fair use. So I need to give you scholarly commentary-- wouldn't ELSI look better in pearls?
ELSI was a program at NIH. This was "The ethical, legal, and social implications program of the national human genome research" ... I was not able to access the article yesterday, first I hit a $96 paywall. As a sophisticated user, I thought I would go to the NIH library and try to get a copy-- but then I got there and was told that i was blocked for "possible abuse". But then the accusation was not meant to imply any maliciousness.. I never got to the article.
A proposed pledge for GP-write ethics: ethics should never be behind a paywall. I found this article on the NIH website about the article I was blocked from reading.
https://www.genome.gov/27557801/reflecting-on-more-than-two-decades-of-the-elsi-experiment/
I am not sure if this is the right context for GP-write ethics effort; we probably don't want to outsource our ethics to professional ethicists. We want to be our own conscious, that's what the goal should be. As to anticipating problems before they arise, ... asteroid heading to the earth, 35 year interception effort; but with ethics, you don't need 35 years first, you can just be ethical when problems come up. You need to address problems when it's time to address them. GP-write, as I understand it, is looking at basic foundational science to develop tools and technology that will have many future potential uses. It's not responsible to jump ahead to what might be done with that technology in 100 years and debate whether we should do this step because someone might come out in 100 years with something dramatic.
Also, scientists should do responsible communication. Stop claiming that this will cure cancer next year. We need clear transparency and clear goals, and then we can respond to timely ethical issues at that point, but only those that are timely.
I have three modest proposals: Citizen science heralds a new citizen-driven bioethics. So instead of ELSI maybe it should be people-driven ELSI. If science wants public trust, then trust the people. It's a two-way street. We should assume that the public has wisdom and can make at least some reasonable decisions about science. We need responsible communicatio about what the risks and benefits are. We need more participation by the public. I like this notion of seven dimensions of participation from Kelty JAIST 2015.
Educative dividend of participation
Control or ownership of resources produced by participation
Voluntary participation and capcaity to exit
Effectiveness of voice
Use metrics to understand/ealuate participation
Collecive, affective experience of participation
What legal issues are of interest to people? IP issues are extremely important, but they might not be the foremost issues that people care about. How does this effect my job? Will the regulatory process be so cumbersome that we will have to wait forever to get the benefits? We need people involved in this and not quite the ELSI agenda.
There was a recent study by National Academy of Science, preparing for future products of biotechnology (2017) -- that regulators will be strained to understand all the advancements. They have to prepare for what might be coming, and develop regulatory science tools for risk analysis and help have a frontdoor for regulators so they know which regulators to go to so that benefits can move to people more quickly.
Q&A
Q: I study human genetics. People think I'm making x-men. Everyone's minds immediately go to designer babies. People think that we're saying we can understand it well enough right now to make scary things. As a PhD in genetics, I can say we're not really close to what people are afraid of. So how do we communicate what we don't know? Communicating what you don't know, isn't something that scientists focus on. Do you think being relatable in terms of what we don't know, would make people more scared or make them think scientists are more relatable?
A: That's an important point. I think transparency means telling people the limits of your knowledge, as well as prospects ofr knowledge. We don't know, we haven't tried it. It might comfort the public.