Could There Be a Dark Side to the Growth of Biobanks?
We’re all well aware of the many ways our personal data can be collected on the Internet, and how big data keeps a record of nearly all our preferences and tastes.
But what if the same kind of data gathering processes could be performed on the very genetic fiber of your being?
As the concept of biobanks has rapidly spread throughout the last several years, concerns over the ethics of collecting the DNA of millions of people and using them for commercial benefit have arisen as well. Despite the supposed anonymity of a biobank’s DNA samples, it’s been shown that these samples might not be so anonymous after all.
According to Science magazine, President Obama recently unveiled a plan to establish a massive national biobank that will store the medical records and genetic information of as many as 1 million Americans. As plans move forward with this biobank, the question stands: does the U.S. government have the right to use its citizens’ genetic codes as it will?
The Pacific Standard has reported that none of the 18 federal laws designed to protect the privacy of individuals and their genetic data don’t actually apply to samples of blood, tissue or other biological material. This means that the millions of genetic samples stored in biobanks can all be traced back to a name, race, zip code, address — even a facial image or set of fingerprints.
“In the worst-case scenarios, those samples and data could be used for research purposes that might offend participants or, in the wrong hands, be used to discriminate against them or their families,” the Pacific-Standard report explained.
At the same time, however, the benefits that biobanks can offer a population shouldn’t be discredited. Biobanks allow for the development of precision medicine, which would remove the guess-work of modern medicine and allow for more simplified and effective drugs and treatments.
Even more significant is the ways in which biobanks can expand treatment possibilities for patients with cancer. Cancerous tissue, when stored in biobanks, can be tested to determine the best drug with which to treat it.
And with the number of tissue samples stored in U.S. biobanks estimated at around 300 million at the start of the new millennium — and growing by an incredible two million each year — it’s unlikely that biobanks are going to fade out of existence anytime soon.
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