Henrietta's Family Finally Gets a Say in Genetic Destiny

At John Hopkins Hospital in 1951, two thin silvers of tissue were removed from a Hernietta Lacks cervix. These cells were taken from a cancerous cervical tumor termed HeLa, which later multiplied wildly and continuously; which had never been seen before. Henrietta’s cells have become an enormous part for research genes that are the origin and that defeat cancer. Her amazing cells also aided in developing drugs that treat herpes, influenza, hemophilia, and even Parkinson’s disease. Other important medical advances were a polio vaccine, cloning, gene mapping, and vitro fertilization.

After decades of using these cells to produce widespread discoveries on diseases, Henrietta Lacks and her family had no knowledge of what her cells were being used for. This meant that the companies using these cells were capitalizing on the discoveries created by Lacks' HeLa cells; while this proceeded for years, her family had received no compensation. Another huge issue that appeared this year for the Lacks family was that a German scientist mapped out the full HeLa genome and made the results public.  

 

HeLa Cells stained to highlight specific parts of each cell. 

The National Institute of Health and the Lacks' family have come to an agreement where the Lacks family has control of the access to the HeLa genome. This means that researchers who receive NIH funds will have to apply to use the data controlled by the Lacks. A laboratory that is not funded by NIH does not have to follow these rules. The Lacks family hopes that everyone can respect to their privacy. What if it was you or your family’s privacy that was being taken advantage of?

The privacy problem that the Lacks family is facing is not an unfamiliar problem. There are plenty of other cases where doctors and researchers are taking advantage of their patients left over bodily parts. It has been seen when a patients parents learned that an examiner had kept a part of their son’s brain. It also occurs often at hospitals where blood is drawn and tested. A report was issued in 1999 by RAND Corporations that says more than 307 million tissue specimens are stored in the United States and each year it grows.

  I feel that these specimens will help make a difference in our world. These things can find information on certain medical issues; medications can be made, and even cures to diseases through these “stolen” specimens. People do have the right to their privacy, but why stop the progression of science. It’s as though most people are not as worried about the good that is coming from these specimens but the money that they are missing out on. People need to see the bigger picture of what we can do for other people and our future. I respect that people have want their privacy; and feel that it is a good beginning to a privacy act between the agreement with the Lacks family and the NIH. We learn a lot from specimens that are donated or used unknowingly. Hopefully one day we can eliminate this problem and come up with a proper understanding.

http://www.cnn.com/2013/08/07/health/henrietta-lacks-genetic-destiny/index.html?iref=allsearch

http://news.nationalgeographic.com/news/2013/08/130816-henrietta-lacks-immortal-life-hela-cells-genome-rebecca-skloot-nih/