Wired Science

Harvested Organs Revolutionize Medicine

Some of the best medical research comes about when scientists can study large numbers of human tissue samples—they can, for instance, pinpoint the ways in which sick tissues differ from normal ones and thus identify disease markers. That's the concept behind biobanks, repositories of human tissues (often blood-based) that are popping up around the world in startling numbers. Some banks are run by research institutes like the Sun Health Institute, while others are run by governments or private companies. But the goal for all of them is the same: to advance human medicine and find cures for debilitating ailments.

Take, for instance, Iceland's government, which decided in 1998 to give the company deCODE Genetics exclusive rights to its nation's health records. In a controversial decision, the Icelandic legislature ruled that all of its citizens' health data would automatically be included in the bank unless individuals requested to opt out. Population-wide biobanks also exist in the UK, Sweden, Canada, Estonia, Latvia, Singapore, and Japan, with varying means for obtaining consent. And smaller biobanks like those of the Sun Health Institute are being developed all over the US.

Having so many samples in one database unquestionably boosts the power of genetic research, but it also raises some ethical questions: How should biobanks gain consent from donors? Can they ensure that each person's details remain private and confidential? And what happens if a person who has donated to a biobank changes his or her mind and wants out? 

In our WIRED SCIENCE TV segment, we take a trip to Sun City to find out how its residents feel about being part of a biobank and to learn more about what the Sun Health Research Institute hopes to gain from these donations. Our accompanying feature article explores the ethics of biobanking and what it might mean when scientists unlock the secrets hidden in your genes.