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Lone Frank's genetic journey

Alzheimer's Disease was listed as a sub-acute factor on my mother's death certificate. My aunt, her sister, lived to be 103, but spent much of her last five years telling and retelling the same stories every few minutes to familiar people of whose identity she was uncertain. My grandmother died, mentally non-functional, in a nursing home after her care became too difficult for the staff of the retirement community she lived in. Even before I knew its name, I knew to fear that Alzheimer's might be lying in wait for me.

The results of the genetic test for Alzheimer's is, says the Danish neurobiologist and science writer Lone Frank, author of the new book My Beautiful Genome, a perfect example of what bioethicists call "toxic knowledge". It can only be harmful, they argue, for someone ordinary (hah!) like me to know their genetic risk for Alzheimer's because there's no treatment and no cure. I think they're wrong. It's not just that you can make informed plans for what-if. It's that people with a family history of Alzheimer's are already worried; the genetic test, by giving concrete information, might be comforting in the way that a doctor's definite diagnosis comforts the sick. Frank cites studies from Boston University that show that although the recipients of such information do become more anxious for a time, six months later they've returned to normal.

Speaking last night at the Dana Centre, Frank was enthusiastic about her journey through the world of personal genetics, which began with having her DNA scanned by the Icelandic company deCODEme. What happened after that is chronicled in the book as she surveys the landscape of what you could call version 1.0 of personal genetics to answer the age-old human questions. Where did I come from? What am I made of? Can I see my future?

What frustrates Frank, and her co-speaker at the Dana Centre, the Imperial College evolutionary biologist Armand Leroi, is that so little serious public discussion is taking places about these developments. "It will hit a doctor near you soon," she said – and yet few are thinking about what will happen then. When personal computers first appeared, they were given to little kids so they would grow up understanding the key technologies for their future. But we're doing nothing similar with genetics.

Just as personal computers changed the way society works and interacts, "The same thing will happen with genetics," she said. "It will be in the hands of everyone." Perhaps not those of us over 40 – but our children and their kids. "What we're dealing with right now are the first-generation products, like the Commodore 64s. They're not great products, but they're the harbingers of something that will be much more influential than they are today."

Leroi, who appears in the book, seemed impatient to get started on this future: he would like to sequence the entire nation's population beginning with all the babies. Britain – where we don't even own our own medical records – could lead the world for genetic research.

An aside: there's a Gattaca-type story in the book that after the candidate left a location the Obama campaign used to sweep it to remove anything that might bear traces of his DNA. In this, apparently he was copying President Clinton whose aides, an audience member said, used to smash the glasses he drank out of when visiting Oxford pubs for similar reasons. It's a great example of poor assessment of risk, when you consider where Clinton *actually* and notoriously left his DNA.

It was the desire to experience these new technologies as a consumer – albeit a highly educated one – that led Frank to write the book. Her single most interesting discovery from the many tests she had done, she said, was not about the physical diseases. "It was actually why we are the way we are." That is, psychologically and mentally: depression runs in Frank's family. What she discovered is that people with robust genetic variants can survive almost anything; people with sensitive ones develop in different ways depending on their environment. She has, therefore, a much greater appreciation of her bond with her father, which might possibly have saved her from a much worse outcome, given her genetic makeup.

The early Internet was never as wild as people thought, but personal genomics is different: there is much less control and the abuses are much more intimate.

"There are cowboys out there," she said. "You find companies registered in Singapore and they say they will test children for 40 different genes and make a list of what you should make your children do." What foods you should feed them, which after-school activities to engage them in, what educational path… "It's completely bogus. Those kinds of companies should not be able to exist."

There are other absurd examples: companies that claim they can match you with appropriate genetic partners – "genetic dating". And, of course, the often-explicated belief of Ray Kurzweil that as genetics succumb to Moore's Law we will all have the chance to become immortal.

Frank has met Kurzweil, on a bad day in Cophenhagen, when he'd lost his luggage containing the more than 200 supplements he takes daily, and heard his theories about the Singularity.

"I think there are several places where he goes wrong," she said. "The price of sequencing is dropping faster than Moore's Law, but the interpretation and knowledge are not moving as fast, and biology is still so much more complicated than electronic circuits. Becoming immortal…I don't see that happening."

I should have a review of the book up at ZDNet in the next day or two. Next up at the Dana Centre is a guide to donating your brain to science.