Recently when I saw the announcement for the upcoming film The Perfect 46 in an early screening at the Consumer Genetics Conference, I was worried, I admit it. There are plenty of ways that stories about genetic testing and resulting “perfection” can go off the rails. And I say that as someone who has remaining reservations about unresolved issues on this front–privacy, quality, and misuse of information among those concerns. But I also didn’t want to see something that suggested we were creating some kind of dystopian genetic future loaded with global corporate and government conspiracies and such fictions.
So here’s good news: this film is not the Mutant Son of GATTACA.
The film that I’ll describe briefly here (without spoilers) was an early cut–this may not be the final form that goes out (heh, much like this field, actually). And it was in a conference ballroom (with no popcorn) and less-than-ideal projection. But I was really interested in the content and the overall portrayal of the science anyway, not the artistic details, so that’s what I’ll focus on.
The premise of the story is that people in many states now have access to their whole genome sequence data which is stored by the government somehow. Because of this existing data, a company comes in that offers a special type of analysis–it will tell you if you and your partner are good genetic matches and your likelihood of having “perfect” children. This service is voluntary–and they stress this several times. That was the key to my tolerance on this story. They were not matching random lab specimens together to make a super-genetic-army or Nobel-winners or anything like that. It really was much more reflective of what people can actually do right now in an early, preliminary way (such as 23andMe And Planning For A Healthy Future Together). Of course, there has always been the similar risk of biologists dating too…
And there are real-life examples of partnership matching based on genetics happening right now. In some Jewish communities, a rabbi will perform genetic testing of potential partners: A Community’s Twist on Genetic Tests. And Cyprus has dramatically reduced the incidence of beta thalassemia by testing couples for several decades now. China (with the additional layer of complexity of 1-child rules) is now implementing testing like Cyprus (1). So the foundations are not far-fetched (compared to the space travel assignments in GATTACA, for example).
So this heady start-up company drama rolls along, and happy couples with healthy children result. But things change. And to avoid spoiling the story, I don’t want to go into what happened. But let’s also say it’s not that far-fetched to imagine biotech start-up mental health meltdowns, among other outcomes for the clients. I will only note that as someone who has tested software in this field, version 2.0 gave me chills. And have parents sued for wrong results of testing and other “wrongful birth” situations that created huge anxiety and financial issues for them? Mm hmm.
Various perspectives are provided from people who are gung-ho for this service, to people who are somewhat reluctant to know what their genes might portend, to some who use the word “eugenics”. Some of this is done for dramatic effect of course. But none of them were out of the realm of discussion that already goes on in this arena. Lee Silver (who is associated with GenePeeks) was in front of me during the movie, and stayed with us at the end for a bit of discussion with the director, and he said he has had people raise this issue with him.
The screening room was full of people with intimate knowledge of this field. And there was not one giggle about goofy science, not one groan of horror over some extreme aspect, or any real discomfort that I could tell. I’ve been in screenings with scientists where that wasn’t the case, and I was listening for it. Although Lee did want the director to check the math on a couple of things.
Will the film irritate some practitioners in this field? No doubt. But it seemed to me that all of the issues raised were fair shots at this topic. And there was a real attempt to get the underlying science right to a plausible degree.
So I enjoyed it. It was like looking at a news report some years out–like those ones Carl Zimmer’s been talking about on the Retro Report. And I’m still thinking about it. So it made its point.
Good job Brett Ryan Bonowicz and your team. (PS: I’m sorry I worried you with my earlier post.) And I want to say how much I admire Brett for bringing this rough cut to this audience at the Consumer Genetics Conference. It was the lion’s den–this group could have been really harsh (they aren’t shy) and they are the main target of this movie. It was pretty brave to deliver it directly to them like this. And I think it went pretty well.
Fun trivia fact the director gave is in the chatter afterwards: the actor who plays the CEO of the company, Whit Hertford, also played the young kid in Jurassic Park who argues about velociraptors. Heh.
Film companion site: The Perfect 46 http://www.theperfect46.com/
This is a small, independent film and I have no idea if it will find wider release at some point–I hope it will find its way to some festivals. They did this with some funding from an IndieGoGo campaign, actually. If you want to know a bit more about the film and the goals you can hear Brett talk about it over there in a short video, and you can reach the team by clicking the “Buy” link on the movie companion page to get to their Facebook page. There was some coverage of it at the MIT Technology Review.
EDIT: and just to make the case, someone commented over at the MIT review with this assessment:
Update 2: I had to attach this to this post for future reference: Personal-genetics firm denies pursuit of designer babies in patent filing. Yeah, 23andMe.
(1) Hvistendahl M. (2013). China Heads Off Deadly Blood Disorder, Science, 340 (6133) 677-678. DOI: 10.1126/science.340.6133.677