“I just don’t feel comfortable about it right now. I will go home and think about it. Can you send me a kit? To take a swab or something?”
“Yes I can send a kit. This is the best genetics research laboratory in the world. You need to worry about real things. I got through ‘The Circle’. It’s not your best book. This information of yours will never be tied to you.”
I had met Dave Eggers the night before he gave a talk at the Reykjavík Literary Festival. He was having a drink at Reykjavík’s oldest coffeeshop/unofficial Icelandic hip-hop HQ, Prikið.
At Prikið, Dave was friendly. He told me that after his talk, he would be meeting for lunch with Kári Stefánsson at the offices of deCODE Genetics, and that members of the press were welcome. He invited me to come along—actually, he signed my copy of ‘The Circle’: “See you Tomorrow, Dave Eggers.”
by Jón Benediktsson
The database was extremely controversial, with doctors, medical professionals and ethicists arguing that the plans basically entailed granting deCODE ownership of every Icelander’s private medical information. Meanwhile, Iceland’s PM Davíð Oddsson—coincidentally an old school buddy of Kári’s—personally vouched for the idea, in classic crony capitalist fashion.
Pepsi Max
I arrived at deCode fifteen minutes early. The lunch should be commencing at noon, supposedly, allegedly, from what I’d been told.
No one at deCode knew what I was talking about.
I checked the Reykjavík Literary Festival website, but nothing. No one at deCode knew who Dave Eggers was, let alone his lunch plans. I wandered out the back door and paced around the genetic research company’s basketball court. Kári Stefánsson is crazy about basketball, I’d later learn. I walked back inside and decided to leave.
That’s when Dave Eggers got dropped off in front of deCODE’s offices.
Dave headed to the front desk and told the clerk he was here to see Kári. A quick phone call and we were given visitor’s passes, led through security, and led upstairs, where the geneticist awaited.
“This is York, from the Grapevine,” Dave introduced me to Kári. “I told him he could join the lunch, but you can kick him out if you want. He’s from Canada.”
“No, he’s a good kid,” said Kári, whom I have never met. “We’re glad to have him here.”
Kári led us into an empty boardroom, with two spots at the long table set for lunch. Dave sat down on the other side of the table and I sat next to Kári. He urged me to eat. The lunch consisted of a salad with pita bread, sourdough bread, chicken wings, and two bottles of Pepsi Max.
“Those people who are under the delusion that they’re immortal”
Kári pressed Dave about the possibilities of starting a tutoring centre here in Reykjavík, similar to 826 Valencia, and what Dave’s role would be. Kári shifted the conversation to his past and his inability to do drugs.
“I was never good at smoking weed,” Kári said. “It wasn’t really in line with the things I wanted to do, such as science. Did you ever smoke weed?”
“No, I never smoked anything,” said Dave.
“See?” Kári turned to me. “I have smoked weed and he hasn’t.”
Dave talked about how the behaviour of writers, artists and musicians has changed. Where alcohol and drugs used to be more prevalent, everyone is calmer nowadays, medicated with antidepressants. Kári explained that his research had suggested higher levels of schizophrenia amongst creative people than within the regular population in Iceland. Depression, however, was only more common with writers. Kári segued the discussion into tales of his younger years and his dedication to fitness and health. “I’m the same weight as when I was 26.”
Then he paused.
“Dave, you’re a good novelist, a good writer.”
“Uhh, Thank you.”
“I can do something for you. Both your parents died of cancer, correct?”
“Yes, that’s true.” It’s the subject matter of ‘A Heartbreaking Work Of Staggering Genius’.
“Why don’t you let me take a sample of your DNA for sequencing?”
“I don’t know, uh. We’ll see. Do you have something for me to take with me?”
“We’ll do it right now. I’ll have the results in a month. Then you can monitor yourself better. You’ll know what to be screening for, specifically.”
“I learnt from my Dad, he was a lawyer, to never make a decision at the table. I’ll think it over.”
“Dave, you’re not one of those people who are under the delusion that they’re immortal, are you?”
Kári sat back in his chair, legs crossed, with a relaxed body but stiff neck. Kári is blind in one eye and he never took it off of Dave, who looked down, contemplatively, before he regained eye contact with Kári. They approached conversations differently: Dave was deliberate and cautious, while Kári seemed focused and planned.
“The brain is an organ”
“You know, Dave,” said Kári. “I think what you have done is only possible by someone with your background. People from anywhere else, no matter how smart or talented, wouldn’t come up with what you have, or done what you’ve done.”
“My background? What do you mean? Irish Catholic?”
“I believe thoughts might be passed down, genetically.”
“Is there any scientific evidence for that?”
“The brain is an organ and thoughts are the product of the shape and function of this organ, which is dependent on genetics. We don’t know how thoughts are formed yet, but my guess is that they can be passed down, genetically.”
“I like that. That’s really interesting.”
Kári paused for a moment, “Look, if you give me a sample of your DNA. I can give you the information to properly screen yourself, so it could detect anything really early.”
“I get screened regularly and I live a healthy lifestyle. My life is quite sedentary. I write.”
“This from someone who wrote, ‘You Shall Know Our Velocity’. You seem nervous about this. Do you feel unsafe giving me your DNA?”
Dave looks down again. “I’m not sure how much information about myself I want available out there. It’s private. I’m a very private person and I’ve been burnt in the past.”
“When in history has biomedical information ever been used to harm anyone? When?”
“Let’s just move on. We were here to discuss other things, correct?”
“You’ve made me mad now,” Kári said and looked away from the table, almost mimicking Dave.
Dave leaned forward in his chair, raised his hands and chuckled to himself. “Oh come on, I’m not trying to upset you. I really love what you’re doing here and I respect it. I wouldn’t be here for this lunch if I didn’t.”
“You see this, Dave?” Kári pressed his tongue in his cheek and rocked in his chair. “You see this? I’m only joking. I just don’t understand why you wouldn’t take this opportunity to get screened.”
“I feel like I’m taking all the precautions that I need to and I’m not sure what I would do with the information. I know cancer runs in my family.”
A line gets crossed
I finished my second glass of Pepsi Max and noticed that Dave had only eaten pieces of bread. He had stopped eating. The salad, pita, and chicken wings sat untouched. He didn’t refill his glass with Pepsi Max. Kári encouraged me to eat up.
Kári leaned forward and uncrossed his legs.
“You have to start worrying about real things, Dave,” said Kári. “You owe it to the world to give your DNA. The understanding of science and breakthroughs in medicine have come from the collection of data and samples. It’s how new breakthroughs are made.”
This is when Dave asked Kári if there was a kit he could take with him. Kári commented on Dave’s book, ‘The Circle’, and reassured him of the safety of any medical information Kári would obtain.
“I’ve had medical information leaked before.”
“You mean about your sister?”
“Yes.”
“Dave, you have children, right? You owe it to your children to get your DNA analyzed by me.”
“Ok, you’ve crossed a line.”
“I have not.”
“You have. I forgive you. But’s that’s crossing a line.”
Dave finished his glass of Pepsi Max. Kári fell back languidly in his chair and crossed his legs.
Kári lowered his voice, “When I was at the University of Chicago, I lived in the same building as Saul Bellow. Do you like Saul Bellow?”
“I think he’s the greatest American writer of sentences. ”
“I used to watch basketball with him. I would be in Saul Bellow’s flat, eating Chicago deep dish pizza, watching the Chicago Bulls and drinking champagne.”
“That’s great! You were there at the same time as him. I didn’t know that.”
“I treated Allan Bloom.”
“Really?”
“Yes, I knew about it before Saul Bellow outed him in ‘Ravelstein‘.”
“Wow.”
“I only wish we could have started treatment earlier.”
“This is the kind of thing I’m talking about. Maybe Allan Bloom never wanted this information to be public.”
“You have to start worrying about real things. What are you writing about now?”
“I’m writing about fair-trade coffee.”
With deCODE, Kári has managed to get a large number of participants to donate their DNA and grant access to their medical records. deCODE gave a t-shirt to anyone who consented.
Dave never gave Kári a DNA sample.
—
See also these articles about deCODE:
It’s Not Just An Anti-Incest App
What do any two random Icelanders have in common, genetically? If this sounds like the beginning of a bad knock-knock joke (or Jimmy Kimmel sketch), that’s probably because by now you’ve read at least some of the pun-heavy headlines popping up everywhere from Bloomberg Businessweek and NBC to the BBC, The Huffington Post and The Independent. A quick sampling if you haven’t: “App Aims to Keep Cousins from Kissing,” or “Icelanders Avoid Inbreeding Through Online Database.”
Kári Stefánsson Awarded For Alzheimer’s Research
Founder of deCODE Genetics Kári Stefánsson was recognised by the Alzheimer’s Association for his work in researching the genetic aspects of the disease.
deCODE Genetics Able To Warn People Of Diseases
deCODE Genetics have collected enough genetic material to warn Icelanders of genetic health risks, reports the New Scientist, but privacy concerns remain.
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