HISTORY OF GENETICS

Gregor Mendel is widely known as the father of genetics; his experiments with pea plants set the foundation for understanding how genes are expressed.  However, as influential as these early experiments were in advancing the basic understanding of genes and catapulting genetics into a credible science, no one person has had a larger effect on the science of genetics than Henrietta Lacks.  Henrietta Lacks grew up on a tobacco farm and as a young woman developed a very aggressive form of cervical cancer.  In 1951, while a patient at Johns Hopkins Hospital in Baltimore, Lacks became the unwitting donor of a small number of cells that would change the world of genetics.[1] From that day forward, her cells were known simply as HeLa: the world’s first immortal cell line.  Henrietta’s cells were the first human cells to survive in culture, and since that first collection,they have not only survived, but have thrived and are still used by geneticists everyday.

QUESTION OF ETHICS

A Code of Ethics is a set of standards meant to guide the decisions and conduct of employees.   In the laboratory industry there is a code of ethics [2]  written specifically for clinical laboratory scientists.  It is authored by The American Society of Clinical Laboratory Scientists (ASCLS) and sets about the moral guidelines each laboratorian should strive to attain.  There was no such code in 1951 when Henrietta’s cells were collected and cultured without her knowledge.  If she walked into a hospital today, at the very least, a release form would have to be signed and she would be aware that her cells were being collected for research.  However, even today ethically questionable decisions are made by scientists concerning other people’s genetic information.  In March of 2013 a group of scientists successfully sequenced the HeLa cell genome.[3] This alone, while being an incredible feat, is not a big privacy concern since the HeLa cells have been available to science for over 60 years.  The questionable decision made by these scientists was to release the entire genome to the public via the internet.

While moving science forward is a good thing, this seems to have gone a bit too far and the scientists who released the information realized this as well.  Unfortunately, it was too late; prior to taking the data offline it had already been downloaded by at least 15 people.[3] The reason the HeLa example was a step too far is because there was a person connected to the data.  These were not anonymous base pairs being displayed for the world to see (if they had been, the public’s interest would have been measurably lower), these were the genes of Henrietta Lacks.  Therefore, not only was Henrietta’s personal genetic information published on the internet, so was much of her family’s, and they were upset.  While only Henrietta’s personal genome was sequenced and made available to the public, inferences and assumptions can be made about the genes of her relatives.  No one knows which genes her children inherited from her, but people and companies can and will base thoughts and decisions on the genes of their mother.  Ultimately, by releasing Henrietta’s genome, the scientists unintentionally exposed her family to even further unwanted attention and violated their privacy.

SOFTWARE’S ROLE

Ultimately it was the scientists that made the decision to release the HeLa genome to the public, but without the aid of the internet and supercomputers, the release would not have been possible.  Prior to the late 1990’s sequencing an entire human genome was more pipe dream than a reality.  But as computers became more and more powerful, the time it took to sequence the genes went down.  Around the same time, the internet became powerful enough to pass large volumes of data around the world in miniscule periods  of time.  In science we must be sure to make careful, ethical decisions when using high-powered technology to drive previously impossible data.  Just because it is possible, does not make it ethical.

Do you know anyone that has been affected by an unethical decision involving software?  Please post any stories or comments.

 

[1] (Rebecca Skloot). rebeccaskloot.com. The Immortal Life of Henrietta Lacks.

[2] (). www.ascls.org. The American Society of Clinical Laboratory Scientists. Code of Ethics.

[3] (Rebecca Skloot). www.nytimes.com. The Immortal Life of Henrietta Lacks, the sequel.