Lone Frank asks big questions around data and genetics
September 6, 2013
Since genetic information does not determine you, it does not in itself tell you anything really important. It won’t be very important to not have your genetic information in the public domain. It won’t seem very important to people to keep it private. Our sense of privacy is evolving; our pictures, out personal data our views of what needs to be kept private change. So why would our genetic data be different? Asks Lone Frank. She believes that it will turn out that it’s not at all as important as we might think right now.
Genetics is about to be taken out of the realm of the scientist and placed in the hands of the public. Having your genome profiled is becoming increasingly cheaper and more accessible. And almost a decade since a complete draft of the genome was discovered by the Human Genome Project, the next years are promising to radically change not only the personal health industry but possibly our wider society.
I think consumer genetics is one of the most important scientific developments, and maybe cultural developments, in this Century,’ say science writer Lone Frank, who has traveled around the world talking to those who have pioneered the personal genetics movement, and written about it in her latest book My Beautiful Genome. With a family history of depression and breast cancer, Lone decided to have her own genome sequenced in the hope of uncovering some of the questions about her family’s past and how – or if – our genome plays a part in our individual destiny.
In the last few years the web has become populated with companies offering a glimpse into our genome. The cost of doing this was once out of reach to anyone without a grant and a lab. But things have recently changed. Through a simple swab of your inner-cheek, companies such as 23and Me, Navigenics or deCODEme can reveal a snapshot look at your genetic makeup. ‘This profiling tells you something about your disease risk – heart disease, bladder cancer, macular degeneration – all kinds of diseases,’ explains Lone. ‘They will tell you something about your personal risk, but it’s not going to tell you what you’re going to die of.