She wanted to decode her beautiful, quirky genome

…we are each of us temporary depositories of information that has an almost eternal life, and which is passed on and on and on…           Lone Frank, My Beautiful Genome

Staring at the luminous model of the strand of DNA on my computer screen, a sculpture of great beauty, perfect function, and masterful design, I wondered. Who is the designer? And is this a question that even makes sense?

I say perfect function but, when it isn’t perfect, there can be disease, pain, suffering. Or simply quirkiness that doesn’t amount to much, just makes you a little different – a bit of rheumatism in your right big toe, for example, so you can’t wear high heels.

My medical librarian colleagues and I were learning how to search the data generated from the Human Genome Project and other ongoing genetics-based research. Our instructor, a bioinformatics librarian with a PH.D. in molecular biology and years of research under her belt, showed us how to look up the gene associated with cystic fibrosis in humans. We found a map of the gene’s location on a specific chromosome and links to places where you can order a clone of the DNA for research.

And over the course of the two-day class, our instructor, who is also a storyteller, told us the tale of research into the human genome, the explosion of data that’s resulted in a very short time, and how far we’ve yet to go.

My Beautiful Genome book coverA few months later, I discovered Lone Frank’s My Beautiful Genome: Exposing Our Genetic Future, One Quirk at a Time and added it to my reading list. Over the next weeks, I’ll be reading and discussing it on Books Can Save a Life as I decide whether or not to explore my own beautiful, quirky genome. I’m reasonably certain I will explore my genome unless I’m persuaded otherwise. It’s not a matter of if, but when. There is so much turmoil and confusion surrounding consumer-based genetic testing, I may wait until things settle down a bit.

The lure of this kind of knowledge – the secret of my own, one-of-a-kind, unlike-no-other-in-the-history-of-the-world genetic makeup – is something I don’t think I can resist for long, though.

As with everyone else, it’s personal.

My genetic make-up was of special concern years ago when my husband and I were deciding whether to have children. We’d gone to a genetic counselor to find out the chances of our children inheriting my mother’s schizophrenia. Fortunately, they were quite low. The counselor could tell us this by simply taking a family history and looking at the heritability data of the grandchildren of people with schizophrenia.

More recently, I was curious to know what the Human Genome Project and other research has revealed about the heritability of schizophrenia, and what a look at my signature genome might tell me. I’ll be exploring that, among other things, as I make my way through My Beautiful Genome.

Possessing this kind of personal genetic knowledge will become commonplace, I believe, and learning how to live with it ethically, in a way that will benefit humanity, will be one of the great adventures of our time.

Do you think we’re overreaching, like the mythic Prometheus? Wanting to know more than is good for us and we can responsibly handle? Please comment if you have thoughts about this.

Mindfulness Meditation

In My Beautiful Genome, Lone Frank talks about how everything we perceive is filtered through our brains, which are influenced by our genes, and how our behavior may be genetically determined. I just happen to be starting a mindfulness meditation class that will take place over the next several weeks. It will be my second time through this type of meditation instruction, a refresher that will bolster the meditation practice I began five years ago. So, while I read My Beautiful Genome,  I’ll also be highlighting some of my favorite books about meditation. If you’ve tried meditation yourself or have a practice, please join in the discussion.

Quote from My Beautiful Genome: Exposing Our Genetic Future, One Quirk at a Time, by Lone Frank, Oneworld Publications, 2011.

One response

  1. Pingback: Encountering the dark matter of mental illness « Books Can Save A Life

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