Henrietta Lack’s cells where harvested from a biopsy without her family’s consent. They became the first immoral cells, able to be replicated in a culture and have been used in some 70,000 papers on genomic research as well as in research for the polio vaccines.
However Lack’s family didn’t know about the so called Hela Cells until twenty years after the fact. By then researchers had begun doing experiments on her children without their knowledge. Their medical records where then released and published without their consent.
In a recent decision the NIH which oversees the immortal cells created a council to govern who has access to the cell line. Lack’s family were asked to sit on the council and agreed. However this raises a larger question. (Wynne Parry via the Huffington Post tinyurl.com/mm5k46p)
As genetic research advances what’s is there to prevent you from having you genome sequenced and having that information published or sold to corporations? What’s to prevent HMOs from using this data to justify charging higher copays and deductibles to people predisposed to certain diseases? Especially given that the ACA mandates everyone must have some form of insurance.
What’s to prevent life insurance companies from using this data to deny paying claims by arguing a person didn’t die of natural causes and was a genetic time bomb?
While this information could be used for good purposes such as screening for various diseases or enabling gene line therapy to remove them from any children you may have, it could as easily be used to nefarious ends.
Given the current trend towards militarized police forces and an ever expanding spy apparatus ,what’s to prevent the government or private corporations from using your gnomic data to track you via DNA scanners.
What’s to prevent us from losing basic rights because we don’t measure up on the Gnome scale? This brings to mind the Movie Gattaca in which such a reality was the case.
Every aspect of your life was determined by your genes and the only way to work your way up was by posing as one of the genetic elites who had fallen on hard times and sold their DNA to so called Invalids.
Sure you’re thinking that could never happened. But this is already a reality for millions of people awaiting transplants. Getting on the list can be a task in itself, then once politics, money and race enter the mix your position on these waiting lists is subject to whims of bureaucrats.
There was recently a case of a black teenager who was denied a spot on a heart transplant list for allegedly having low grades and run ins with the law, which the hospital argued showed he had a pattern of not following orders.
After the story broke the hospital revised its decision and he was put on the list. But what about the next time something like this happens and the media doesn’t pay attention?
While I’m all for scientific progress there should be discussions about how these new technologies may be abused. For instance while Google Glass may be cool it does raise privacy issues.
Having the capability to record everything you see doesn’t mean you should. Nor does it mean you have to right to record others without their knowledge or consent.
We are hurtling to a world where the line between humans and technology is blurring by the second. In this new world we need new guidelines to govern how we interact with each other. Are we gong treat each other with respect or like a series of codes to be traded like commodities?