After the death of her father, Danish author and neurobiologist Lone Frank turned to genome profiling for insight into herself and her family. Today's gene tests scan a person's DNA sequence for various single-nucleotide polymorphisms, or "snips"—basically, specific markers associated with certain conditions. For around $1,000, established tests can, for example, identify a person's genetic risk for Alzheimer's or breast cancer. Frank also participated in research conducted at the University of Copenhagen, hoping that a new form of genetic personality test might help to explain her family's struggles with depression. In My Beautiful Genome, Frank—who speaks at Montreal's Paragraphe Books on November 9—shares her experience with the rapidly evolving science of personal genomics.
Eric Mutrie: You strike a great genre balance with this book; a biological memoir. Your genome is a part of this book, but so is the actual story of your life. What's your reflection on the classic nature vs. nurture argument in terms of one's biography?
Lone Frank: Nature vs. nurture is a dead discussion: it's neither either-or. So many people will still ask "Is it environmental?" or "Is it genetic?" but it's both.
EM: Do you think that there's a place for biology in every biography?
LF: I'm sure there is. We're never just our stories. People talk about their psyche or the way that they are, but that's halfway made up by biology. Your biology plays a role in who you are, no matter how your biography turns out. Biology is the start of it. Our personality and our psyche is a filter that everything has to go through, and that is a biological filter. The way that the brain is wired is at least partially genetic.
EM: The genome testing you participated in at the University of Copenhagen studied variants that predispose you to things like anxiety and depression. When you first got the results back, they were, admittedly, bleak. But you investigated your "highly sensitive personality," and used your genome almost therapeutically to overcome some of your struggles with depression. What do you see as the best-case scenario and worst-case scenario of knowing your genome?
LF: The worst-case scenario is what a lot of people fear: a self-fulfilling prophecy. You tell somebody that they have psychological weakness due to genetics, so they'll choose to be weak, and victims of their genetics. That is a danger, but that is very much a personality question.
You can also say, "I've been dealt this hand of cards that isn't that great, but if I play it really intelligently, perhaps I will make things better." Those are the two extremes. I think most people will probably be in between—get some knowledge of their genome, and not really use it for anything, and kind of forget about it.
EM: You've presented personal genomics as today's equivalent to the personal-computer revolution. People were trained to use computers, and now people need to be trained to use their genome to its full potential as well. We might be an adjustment generation, but to our kids it might become completely natural.
LF: It's funny to see the emails I get from readers. The older they are, the more horrible they think it is. In Denmark, a lot of high-school kids are using my book in certain school contexts. For them, it's like a new gadget. It is just that stiff psyche of being older, where things that are new are scary. I think that, looking at younger generations, they will be not just PC-literate, but also bio-literate, and that's just inevitable. It will be so normal you don't even think about it.
EM: You explore a lot of different examples of the commercialization of genomic testing. For example, you discuss a Chinese summer camp that places kids in programs based on their genetics, and a dating service. These show a certain eagerness to embrace personal genomics, but at this point, science says they're also bogus.
LF: That's why I put these examples in. I think it's really important to show that this development is ongoing. There will be people that try to rip you off, and sell you products that don't work. Not everything genetic is great and scientifically based. It's a development that you see in any new kind of industry. It's good to get critical journalists looking at it, so that you will perhaps get authorities to clamp down on the worst examples. It also helps getting more knowledge out to consumers, to keep them vigilant.
It's funny to see how much interest there is in gene dating. Two different newspapers doing stories on whether or not gene dating is really the way to find your partner just called me. The answer is no, it's not. It's a sign of the times. It's so tempting to ask all of these fundamental questions of our genomes, and it's not going to be that easy.
EM: At one point in the book, your coworker pushes you to mother his child because he thinks you have great genes. With surrogacy and sperm donors, we're seeing a lot of this kind of superficial regard for "good genes." Do you think we'll reach a point where we'll start looking at people's actual genomes like they're Facebook profiles?
LF: I'm sure that people on regular dating sites and on Facebook will start asking, "Before I go out with you, could you send me your genetic profile?" I think that people will definitely get into finding the best possible genes for their kids. You already see that with people going out and hunting for sperm donors who are tall and dark, or have blond hair, or whatever. The information is there and available, and we all have that streak of wanting the best possible biology for our kids. It will become more accepted to try to find the best possible genome. I think the virtual babies and the genetic quotient that I talk about in the book with Armand Leroi will probably be reality within ten years for some people.
EM: Your stance is that we shouldn't keep our genomes private-information wants to be free. The US has a law, GINA—the Genetic Information Nondiscrimination Act—that prohibits employers and insurance companies from screening employees based on their genomes. How do we share our genomes while still having control over what they can say about us?
LF: I think, for some time, we will probably get into trouble. There is still this belief among some people looking at genomes that a tiny increased risk means that a person will get heart disease or Alzheimer's. It will become clearer that this knowledge is not a crystal ball; it is not a destiny. You can't say how someone is going to turn out. That depends very much on what one does with one's life, and on environment. Within a reasonable amount of time, employers and insurers will realize that it's just not worth it to screen people based on gene profiling—it's much better to sit down and talk with a person.
EM: We've just reached seven billion people on Earth. What can genomics reveal about both our commonalities and our differences?
LF: I believe genealogy's become the number-one hobby in America. People are so interested in where they came from, and who they might be related to. As genomics databases grow, more people will go into genetic genealogy, and find someone they share a forefather with, maybe going as far as ten generations back. People with the same mutations will start to find each other on Facebook. We seek identity in so many ways, and genomics is just one more way that you can gain a feeling of community or commonality.
It will also become clear that the genome is so much more varied than we thought. The rhetoric of the past twenty years—that there is one human race, and we differ so little that it's not even worth talking about—is not the case. I think it's very exciting to look at how we are different, and how groups become different by living in different parts of the world, whether for five thousand years, or even a few hundred years. We will begin to see what actually happened in our evolution.
Lone Frank will be reading from My Beautiful Genome and answering questions at Paragraphe Books (2220 McGill-College Ave., Montreal) at 6:30 pm on November 9. The reading is free and open to the public. This event is co-presented by the J.W. McConnell Family Foundation, the Blue Metropolis Foundation and Maisonneuve.