To get involved into small talk rounds at the Milken Institute’s Global Conference during lunch or a reception there is one very popular question that immediately triggers conversation: “Have you had your personal genetic code analyzed yet?”
The personal genome is one of the most requested and discussed piece of information these days. Firms like „23 and me” or „Navigenics” offer the service of analyzing it for about 2.500 US$ (the yearly update adds up to an extra 250 $ a year). They provide a little box you have to mail back to deliver a sample of your salvia or spittle. On this basis your personal genetic code is checked and the results for a range of known diseases will tell you your risk scores and if these risks are lower or higher compared to the population’s average.
That sounds easy and helpful. So we are on the verge of googling our genomeand shouldn’t “mind to get personal” in terms of our genome as the title of one interesting panel at the conference suggests. But the consideration might be a bit more disparate. Sitting next to a funds manager of one of the popular U.S. universities we immediately get into a discussion about it. He and his wife had their genomes analysed some months ago. “I was really curious about it and thought it might be really helpful”, he said. “But when we had delivered our samples I suddenly started to think ‘Do I really want to know’?” He exactly got to the point: Do we want to know? Or might not knowing that I have like a 40 percent risk of getting Alzheimer (a disease without any chance of medical healing up to now) be a blessing for the time being?
And: Who should know? „23 and me” opens up an individual account with the results of the genome analysis on a secure database. That’s what they promise … Can I be sure that this is reliable? Or might other people be able to access my genetic database trying to find out about my health risks before hiring me („She has a 35 percent risk of heart attack, the other guy only 11 percent, let’s take advantage of that, he will probably be the longer term investment …”).
Craig Venter, one of the big names in the business of genetics and speaker on the panel, got the fact of the matter: We will have to learn what to do with these data, how to use them and how to protect them.
So do I mind getting personal? In many respects not at all. We are on our way into the open access knowledge society anyhow. But in this case it’s different. I would like to take my time to figure out what I want to know. And even more do I need to figure out who else should know. In any case I still prefer not to be approached as a bunch of health risk statistics – not in business and not in private life.
See also here: Science on DLD, Meine Gene kriegt Ihr nicht, Genethisch vertretbar
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