It sounds like something out of science fiction. And, a few years ago, it was.
In the 1997 sci-fi movie "Gattaca," Ethan Hawke and Uma Thurman lived in a society where the government could predict everything about its citizens — their health, their intelligence, their career potential — using their DNA, and would assign them their role in society accordingly.
Thanks to recent advances in genetic prediction, the future is here, at least on the scientific front. Jason Fletcher, a professor in the University of Wisconsin-Madison's La Follette School of Public Affairs, Sociology, Applied Economics and Population Health Sciences, has studied the intersection of genetics and social sciences for years.
In his new book co-authored with Dalton Conley, "The Genome Factor," Fletcher looked at the implications of those advances in genomics, both positive (medical breakthroughs, targeted genetics treatments) and negative (discrimination in employment or health insurance based on genetics).
Fletcher talked with the Cap Times about how public policy needs to catch up with science, what sorts of remedies should be in place, and what the average person should consider.
Why was this the right time to write this book?
I’ve been co-organizing a conference that brings together psychologists, economists and social scientists who are working in this area. I’ve done it once a year for the past eight years in Boulder, Colorado, called Integrating Genetics and the Social Sciences.
After many years, myself and others, including my co-author, Dalton Conley, a sociologist, wanted a moment of reflection on how we’re getting to be where we are now, and what’s to come. One thing that we’ve been so impressed about with the conference is how quickly things have moved. We check back in once a year and see how the field is emerging, and both the disciplines represented have changed a lot and grown, and the number of people interested has grown.
This book is a reflection of what we’ve seen happen in the last five years, but also thinking about what’s coming, and asking how the public is going to take some of the privacy issues that are emerging, and some of the predictive capacities. How is that going to spill over into public policies?
As you say, the science is moving so fast that if you don’t grab that moment of reflection now you may never get the chance.
We finished the book about a year ago, and are realizing how much we’ve already missed and how the technology and the data are moving much more quickly than we thought at the time.
When you talk to groups, do you get the sense that they are aware of what’s going on, or how far it’s gone?
I think people read or see in the news that there are a lot of genetic discoveries happening that really matter. There are medical treatments that take advantage of genetic differences. But also, a lot of people, either they or someone in their family, have contributed DNA to a site like 23andMe. And they wonder, “What have I done?” They don’t realize how permanent that decision might be.
A lot of people contribute their DNA thinking about their genealogy, their own past and their parents, not realizing that they’re contributing to a larger research endeavor to do some of these predictive exercises with advanced statistics, like the findings about genetic variance related to whether you go to college. Some of those data sets are 23andMe data sets.
So I want to paint two parts of a picture. One is there’s a lot of enthusiasm about advances and new treatments and new discoveries. But also understanding that we need some policy frameworks in place to get our priorities straight about what we want to do with genetic information as it leaks out either through a data breach or our own interactions with our insurance companies and our employers.
The revolution that you talk about are not the facts about genetics, which haven’t changed in many years. It’s the refinement and acceleration of these predictive capacities?
It’s that, and just who is contributing their DNA. It used to be that it was so expensive that nobody could actually do it. Now anybody can do it. And those two things feed on each other. They used to have really small data sets. Now they have really big data sets.
When I saw you speak at the Wisconsin Science Festival, there was a lot of talk from the audience about “doom and gloom.” One person called it the “Department of Dystopia.” Is that a fair reaction to what you’re talking about?
I focus a little bit on what this dystopia is, because that's where the policies are that we want to have in place. We don’t want to guard against the good things that could happen. The main thrust is, "What are we not thinking about in terms of putting guardrails or a legal infrastructure to not allow what we might not want to happen?" My own claim is that we’re a little bit late to be thinking about that, so I put that front and center.
The remedies that you’re thinking of are legal protections and preparing for a data breach in DNA information, which you say is inevitable.
We have to decide what we want to protect and what kinds of discrimination are going to be okay with us.
That’s a provocative sentence.
Discrimination is a very loaded word. But if step back, in discriminating about the type of treatments, there's both positive and negative. Discrimination as in, "You can’t go to this school or can’t live in this home," we have a history of that very bad kind of discrimination. But we also discriminate positively in that people with certain genetic traits are given certain treatments because they would be most likely to benefit from them. In a sense, we discriminate toward them.
Obviously, environment plays a role as well. Is there a worry that there might be a self-fulfilling prophecy at work? If parents are told their child is more likely to be a genius, then he gets all the advantages, because he’s steered more toward an academic future than another child who might not get the same prediction?
Absolutely. That’s this question of how much we are willing to discriminate early on. These are imperfect predictions. They will always be imperfect predictions for social outcomes. The environment is always in play and, also part of the social remedy is to change people’s environments. We need both in play in order to think about these issues.
What should the average well-informed person do?
The decisions that an average person has is whether to contribute their own DNA to a company. That’s their first and foremost decision, and I would consider it close to a permanent decision. And when you contribute your DNA, you’re in part contributing your family’s DNA. Information that’s elicited from that DNA is predictive of your children’s outcomes, and your parents' and your brother’s and sister’s.
For policy, I think (we need to be) thinking about these issues of discrimination and where the average person stands on what ways we are willing to use this information for positive or negative discrimination for employment or health care settings. There’s a lot of potential benefits and upsides, but a lot of problems that we need to face.