Biobank? What Does the Public Think?
55 years ago today, Watson and Crick discovered the structure of DNA - the double helix that encodes and passes on genetic information. Since that time, scientists have been working to unlock some of the secrets and opportunities that spring from DNA.
Why does one sibling get cancer and another remain healthy? Why has autism touched so many more lives over the past couple decades? Many health problems are rooted in a complex mixture of genetics, lifestyle, and environmental factors, and answering those questions requires a broad database with genetic, environmental and lifestyle information concerning thousands and thousands of subjects.
A Biobank is such a repository of tissue samples and data. The National Institutes of Health thinks maybe the United States ought to create a Biobank to help out such research.
Of course, any thinking person ought to be enthusiastic about such an important research tool, right? Well, maybe. But there are some other issues to think about, beyond the prospect of curing diseases. Do we really want a massive database of such information sitting out there ready to be hacked and misused? Think maybe your insurance company or the NSA could dream up a few nefarious uses for all that info? And who decides what gets researched?
The NIH has decided to seek public feedback, and Kansas City is one of only 5 sites to host a public forum on the topic. The event is free, and will provide a rare opportunity to learn more about biobanks and provide feedback that will weigh into the decisions to be made. It will be at the Ewing Marion Kauffman Foundation on March 8 from 10 until 1 - go here to register.
This is a fascinating issue - right at the crossroads of society, individualism, ethics and medicine. It's also an issue that is getting addressed without much public attention. This forum provides an opportunity to get informed and be heard.