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My Beautiful Genome




  Advance Praise for My Beautiful Genome

  “I haven’t seen Lone Frank’s entire genome, but it’s obvious from the first page of My Beautiful Genome that she’s got the SKFF2 gene (Sharp as a Knife and Friggin’ Funny, Too). No decoding needed here: I love this book.”

  Mary Roach, author of Stiff and Packing for Mars

  “As Lone Frank compellingly argues, the advent of ‘personal genomics’ promises to be as socially and philosophically transformative in the next twenty years as ‘personal computing’ was in the last twenty. My Beautiful Genome probes and explores the critical questions and unexpected nuances this new science raises about who exactly we are—as a species, and as individuals.”

  Brian Christian, author of The Most Human Human

  “Provocative, wryly humorous, illuminating, deeply personal – if you want to know more about the world of consumer genetics, into which we appear to be unstoppably heading, this is the book for you.”

  Frank Ryan, author of Virolution and Metamorphosis

  “Before I read My Beautiful Genome I could not decide if I would ever get my genome analyzed, but now I’m sending in my spit ASAP. Lone Frank is one of the surest science writers I’ve ever read. She not only explains with great clarity the technical twists and turns of the science behind unraveling the double helix, she does so in such a page-turning, conversational style that once I started, I couldn’t stop. Read this book – your genetic future may depend on it.”

  Michael Shermer, author of Why People Believe Weird Things and The Believing Brain

  “A probing biological memoir… Refreshing [and] wonderfully poetic.”

  Publishers Weekly

  Also by Lone Frank

  The Neurotourist:

  Postcards from the Edge of Brain Science

  My Beautiful Genome

  Exposing Our Genetic Future, One Quirk at a Time

  Lone Frank

  A Oneworld Book

  First published in English by

  Oneworld Publications, 2011

  This ebook edition published by Oneworld Publications, 2011

  Previously published in Danish as Mit Smukke Genome by Gyldendal, 2010

  Copyright © Lone Frank, 2011

  English translation copyright © Russell Dees, 2011

  The moral right of Lone Frank to be identified as the Author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988

  All rights reserved

  Copyright under Berne Convention

  A CIP record for this title is available

  from the British Library

  Illustrations by Jørgen Strunge

  ISBN 978-185168-864-7

  Typeset by Jayvee, Trivandrum, India

  Cover design by Jamie Keenan

  Oneworld Publications

  185 Banbury Road

  Oxford, OX2 7AR

  England

  Learn more about Oneworld. Join our mailing list to find out about our latest titles and special offers at:

  www.oneworld-publications.com

  For my parents – naturally

  Irene Frank and Poul Erhardt Pedersen

  In Memoriam

  The only way to be general is to be deeply personal

  Asger Jorn

  Contents

  Prologue: My accidental biology

  1 Casual about our codons

  2 Blood kin

  3 Honoring my snips, in sickness and in health

  4 The research revolutionaries

  5 Down in the brain

  6 Personality is a four-letter word

  7 The interpreter of biologies

  8 Looking for the new biological man

  Notes

  Acknowledgments

  Index

  My Beautiful Genome

  Prologue

  My accidental biology

  I’M DEAD TIRED. For the last hour and a half, I’ve been run through a battery of tests, all designed to shed some light on my personality, my disposition, and my intellectual abilities. I’ve volunteered to take part in a major research project to examine the connection between specific genes and personality – in particular, a tendency toward depression. We have finally reached the last questionnaire. A young, female researcher is gazing cheerily at me from across a table.

  “I’d like to ask you some questions about your immediate family – having to do with drug and alcohol abuse, criminality, and psychological illness.”

  Her perky blonde ponytail sways back and forth. It makes her look especially efficient.

  “They’re not about you but about your first-degree relatives: your parents, siblings, and children.”

  “I don’t have any children.”

  “Your parents and siblings, then.”

  “My parents are dead, but I have a brother.”

  “Whether they’re alive or not doesn’t matter, the questions are the same,” she says. “Let’s start with alcohol. Have any of your first-degree relatives had any problem with alcohol?”

  “Problem? Problem, you say? Yeah, well, I suppose I’d have to say yes to that. Such as it is.”

  “Yes… ?”

  “My father. Some would say he had a certain problem with alcohol.”

  Starting your day with vodka in your coffee and working your way through with malt liquor might be called by some people a bit of a problem.

  “For an extended period?”

  “As long as I can remember, really. But he didn’t think it was a problem himself as such; he could certainly function.”

  She flips the first page of the questionnaire, following the instructions.

  “Did this alcohol abuse ever lead to divorce or separation?”

  “Yes.”

  She looks at me inquisitively, inviting additional information.

  “Three times. Divorce.”

  The eyebrows shoot up her forehead.

  “Well, then. Was he ever sent home from work or incapacitated?”

  “No, no.” Of course not. My father was a very capable and conscientious teacher all his life. He did his job, no matter what.

  “No problem there,” I reply, thinking the worst is over.

  But then she asks, “Were there any arrests or driving under the influence convictions?”

  I pause. “A few. That is, I don’t quite remember.” I feel like I need to explain this, provide a defense. It all suddenly sounds worse than I remember it.

  “Nothing ever happened. No accidents, I mean. My father was an excellent driver, even when he’d had a few. He was just unlucky enough to get caught. A couple of times.”

  “Okay. Good. So, we’re done with alcohol.” She resumes the interrogation with a more optimistic tone. “Have any of your first-degree relatives had any mental health problems?”

  “Yes,” I say without hesitation. I’m asked to identify which ones.

  “All of them.”

  She mumbles to herself, leafing through her papers, confused. “All of them? Okay, okay. Where do we start?” I want to be helpful, so I quickly run down the list: When I was little, my mother suffered from depression – deep, clinical depression, which was particularly bad in her last few years. My younger brother has had a few bouts of his own, and my father was manic-depressive, diagnosed at sixty, by which time the disease had come to be known as bipolar disorder.

  “He had manic phases?”

  “I’d have to say yes.” I flash back to that one Christmas when he essentially did not sleep for a week but trudged around the house clutching a stone-age axe in one hand and his well-worn Bible in the other. Talking and talking and talking, becoming more and more incoherent. Finally, we had to hospitalize him.

  “Any psychoses?”
r />   Here, I dig in my heels. After all, we’re not a family of lunatics.

  “No. Nothing like that,” I reply. “Except, maybe… There were some episodes where my father believed someone was prowling around the garden shed at night to steal his tools. There was also a period when he thought someone was talking to him through the heating pipes, but that was only for a short time. It went away with a little Zyprexa.”

  She looks down at her notebook again and adds a note. It says “mild paranoia.”

  “Has anyone other than your father had psychiatric treatment?”

  “We all have.”

  “Medication or consultations with a psychiatrist?”

  “Both,” I say. Then, something comes to me. “What about suicide attempts, do they count?”

  The young researcher nods silently and locates the box on the questionnaire for suicide attempts.

  “There were two of them – two that I know about, anyway. Both were made by my father. My mother, on the other hand, talked about it, but never tried it.”

  The researcher stares resolutely at her papers as she turns to the final questions, having to do with narcotics abuse. Here, I can answer with a clear conscience that no one in my family has ever had any problems with drugs. Never.

  “You’ve never yourself taken narcotics of any kind?”

  “I drank some homemade hemp schnapps on New Year’s Eve at the beginning of the nineties, but that’s all. And it didn’t work.” Or, rather, it worked so well that I slept through the whole party, which reportedly took place in the great hall of Copenhagen’s squatter town Christiania.

  “About alcohol,” she continues, “I also have to ask you about yourself. How many drinks do you have during the course of a week?”

  “It must be around fourteen,” I lie, promptly and deftly. For some reason, twenty, or a bit more, doesn’t sound good, and my intention is always to stick to fourteen. “You know – two glasses of red wine a day, purely for medicinal purposes. It’s because red wine contains resveratrol, which is healthy for pretty much anything. Heart, blood pressure, cognitive faculties.”

  She nods enthusiastically.

  “Fourteen drinks, that’s within the National Board of Health recommendations. Good, good,” she says at last, displaying an almost liberated smile. “Yes, well, I don’t think I have any more questions.”

  BUT I DO. I have questions. They’ve been smoldering quietly in my mind as we progressed from question to question. They were probably the real reason I volunteered to be a part of this genetic study.

  If I am to be honest, there is a direct connection between my interrogation today in a nondescript scientist’s office and the hospital room at the other end of the country where I held my father’s hand as he died on a summer’s day a year earlier. Because what is an interest in genetic information about? It’s about your heritage, your history, your identity.

  I sat there in that stifling hospital atmosphere with the person I loved more than anyone else in the world, unable to do anything except wait for his end. And when it finally happened, when my father was simply gone in a moment, a single sentence swirled in the back of my head: I’m an orphan.

  The realization left an icy sensation, not just of being alone, but of being without a source, without a history. Now, there was no one who had been witness to my life back to a time before I could even remember it myself. No one who could see and describe the thread that ran between how I was as a tot and what I later became, who I am today. The past, in its way, was gone. And the future – well, you could see an end to it. At forty-three, I’d reached the age when the chance of having children was pretty much theoretical. That’s fine with me, because I’d never seriously contemplated having any, but being both without a source and without any offspring is to be floating free in the vastness of humanity, of life. When you can’t see yourself in any other being, you can lose sight of yourself.

  Where do I come from? Who am I? Am I going to be like my parents? How will I die? And when?

  These are questions humans have always asked, but now they can be asked very pointedly and put to a wonderfully tangible informant–our own DNA. And I cannot help but ask these questions of my biology: I’m a biologist by training. I’m deeply fascinated by the human being as an organism. As the miraculous result of myriad microscopic processes unfolding.

  It reminds me of something my father said to me countless times over the years, when he was in a sentimental mood or I needed cheering up for one reason or another.

  “My dear daughter.” There was always a particular emphasis on dear. “You possess an incredibly fortunate combination of genes. You got all the good stuff from your mother and me, but you avoided all the bad stuff.” Here, he would embrace a slight pause. “Well, apart from the depressions. But, otherwise, you’ve got nothing but trophies on the shelves.”

  What, as a child, do you say to that sort of thing? You roll your eyes and shrug it off. Parental pride is, of course, good for your fragile ego and limping self-esteem, but you also know that it’s way off the mark.

  “Stop it, Dad, you’re talking nonsense.”

  When I was young, I definitely did not see myself as a slender green shoot topping the stout branches and meandering roots of the majestic tree of my ancestry. I was my own person with my own will, quite independent of previous generations and their idiosyncrasies. What could something as abstract as “biological legacy” mean to me, an individual who was not only perfectly capable of thinking for herself but had no thought but of moving forward? Absolutely nothing.

  Now, with my father’s death, it’s different. Now, it means something. Now, I want to trace my heritage to the roots. To know exactly which genetic variants and mutations have come down to me, and what they mean for who I am. I want to understand how these accidents of biology have shaped my life, my opportunities, and my limitations.

  Of course, in front of the mirror, I can see my heritage chiseled directly, and not always entirely happily, in my physical features. The pronounced nose is clearly from my mother’s family, where you can spot it back in the sepia-toned portraits of my great-grandfather. My thin, bony frame comes from his wife – my grandfather’s crazy mother of whom everyone was afraid. A stingy shrew of a woman with a gift for domestic tyranny, I vaguely remember her from childhood visits to their apartment, infused with the acridity of mothballs and stuffed with heavy mahogany furniture and fussy crocheted doilies. My somewhat elongated, slightly plump face and my narrow lips are clearly a package deal from my paternal grandmother’s side of the family tree.

  But my familial heritage is not confined to my features. It is undoubtedly from my paternal grandmother’s line that I also got my chronic tendency toward sarcasm. Occasionally, I can hear my father’s voice in the zingers spurting from my mouth, and I can almost feel his accompanying facial expressions in my features. Is it simply the product of childhood’s rigorous social training or is some biology mixed in there? Do we carry this sort of inheritance in our chromosomes? How do nature and nurture collide to create all the stuff that makes people interesting?

  “It’s not because I like saying this, Lone,” said a well-meaning friend at university many years ago, “but your personality is against you.” That was around the same time an American friend called me “brutally honest.” That judgment made me feel happy about myself until she put her hands on her hips and shouted: “It’s cruel! Don’t you understand that people despise honesty?”

  But how much of the unappealing aspects of my personality can I blame on the minute variations written into my DNA? Do my recurring depressions and consistently dark outlook on life derive from a few unfortunate genes, handed down from two different families? Or do they derive from an upbringing that could at times be, to say the least, challenging?

  There is also the issue of physical ailments. I’m not plagued by illness or anything, apart from a touch of rheumatism in the innermost joint of my right big toe, which makes shoe shopping difficult and
high heels impossible. But what might be waiting in my future? Will I die the way my parents did? Will I be hit by breast cancer at a young age or be forced to take year after year of pills to regulate my heart and blood pressure? If I took a sneak peek at my genome, could it tell me what is in store for me? And if I know my prognosis well in advance, can I rewrite my future?

  WE CAN FINALLY begin asking these questions, because a revolution is under way. Genetics is no longer a matter reserved for scientists and experts; it is becoming quite ordinary, practical, and everyday. In fact, over the next decade, genetics will become as familiar to us as the personal computer. Originally, computers were large, complicated, machines – mainframes – found exclusively in universities and research institutes and only available to the initiated specialist. But then the technological dikes burst, prices fell dramatically, and today computers are the tool of the masses.

  But what’s the genetics equivalent of the PC? Well, the first genetic dating services are already in business. At GenePartner, based in Switzerland, they claim to be able to match love-starved singles on the basis of selected genes relating to their immune systems. A handful of studies indicate that such genetic compatibility results in both a better sex life and healthier babies. You can also have your prospective boyfriend – this only works for men – tested for whether he has an unfortunate genetic disposition for infidelity or for getting mixed up in bad relationships. If you have children, you can have them tested for whether they possess the genetic disposition for muscles more suited to speed-related or endurance sports. In the next ten years, all newborns will routinely have their genome mapped and deciphered, according to people in the know. And these same technological experts predict that, within a few years, a complete sequence mapping all six billion bases will cost less than the baby’s pram.

  How can such straight-from-the-womb genome sequencing be used? And will there be any limitations to their real-life application? Jay Flatley, who heads the major league genomics company, Illumina, has argued that “the limitations are sociological,” and, of course, he is correct. Social norms and political legislation will dictate what we may do, and culture will dictate our demands and what we actually do.