DNA: Our Savior and Our Nemesis
In response to a video about Heather Dewy-Hagborg’s work to disguise or confuse the DNA samples we leave behind everywhere we go I wrote on Facebook:
As a creative, I’ve thought about this DNA question and the accessibility to not only our own but our family members DNA and how it is used in science and by law/government enforcers. They steal our babies’ DNA as soon as they are born, sometimes before they are born. So, what will happen in 30-30 years of that child’s birth if they are innocently in a place where a crime is committed? Leaving their DNA there a few hours before the crime would make them suspect and could lead to unforetold difficulties. We can’t help or protect them because it became too late the moment that their DNA was entered into the databases.
The fact that we’re dropping DNA anywhere is not that big of a deal until you see someone like Dewy-Hagborg collecting DNA randomly from public places. When that DNA is collected and identified to link with groups or individuals, we must begin to question where it is taking us.
The Tip of the DNA Iceberg
On July 25, 2018, Business Insider published “DNA-testing 23 and Me has signed a $300 million deal with a drug giant. Here’s how to delete your data if it freaks you out.” The author Erin Brodwin states that genetic information is being used by Big Pharma to develop new drugs based upon sampling DNA data. Brodwin also implies that anyone can ask to have their saliva, one of the media used to collect DNA, removed from the storage and in some cases can ask to have DNA data removed from the database. But what happens when DNA data has already been sold, shared or in the process of being utilized in some research somewhere beyond the DNA collection companies like 23andMe, Ancestry.com and others? It is the accepted consensus that anything that enters a computer and exchanged across the internet is forever on the World Wide Web, never to disappear. Cloud storage is just one more computer system serving as storage and in many cases available to research facilities worldwide. Can we expect that our DNA data will be expunged from the various databases wherever it may have traveled?
Do You Really Want to be Immortal?
You might recall the case of Henrietta Lack whose cancer cells have generated HeLa, the immortal human cancer cell that has generated cervical cancer cells since 1951. HeLa is the most common human cancer cell used in cancer research. Lack died the same year of cervical cancer. Unbeknown to her family and descendants, corporations made billions from Lack’s cancer cells. Decades later the Lack family was still being requested to donate blood for research. The corporations did not compensate or give recognition to the Lack family for the use of the cells or DNA. They were unaware of participation in any research. The story doesn’t end here.
In 2013 the scientist of European Molecular Biology Laboratory (EMBL) in Heidelberg published the complete genome of the HeLa cell without the permission of the family. One might think that after previously being taken to task by the Lack family, a scientist would have questioned the ethics of documenting and publicizing information about Lack and her genetic line without consent. Unfortunately, that was not the case. After the Lack family addressed this issue with EMBL, the original publication was retracted and republished without identifying markers. In fact and fiction, some scientist has proven to be unethical in their search for things that will be for what they deem, the greater good of humankind. I wonder if Dr. Frankenstein had similar thoughts?
The lack of ethics aside, the good that has come of research in the movement to strike down cancer and all other life-threatening diseases cannot be denied. Anyone with any of the ailments that are chronic or resulting in death will be the first to give praise to the researches and research alike. The question is whether we want to be human guinea pigs from the cellular level. At present, there appears to be no major harm done. But what happens when the mad scientist decides to make science-fiction a reality?
The Unending Story
Unlike Shelley’s Frankenstein, the issues surrounding DNA are very real. The surrender of DNA for the specifics of tracing ancestral lineage is no peccadillo that is created by the desire to know our ancestral lineage. Furthermore, there is no evident solution for keeping our DNA private and preventing the sale and use of it as the collectors of DNA decide they might do. The sale of DNA by the collectors offers no compensation to the people whose DNA is used to earn billions for the corporations and Big Pharma. Each person who sends in their DNA sample must pay a fee for the privilege of putting their DNA on the market. The DNA repositories are earning income from the providers of the samples and the corporations that buy the data.
Like Henrietta Lack and HeLa, we’re all immortalized without our consent, and there seems to be nothing we can do about it. To use an old axiom, “it’s too late to close the gate after the cow is gone.”
Works Cited
Brodwin, Erin. “DNA-Testing Company 23andMe Has Signed a $300 Million Deal with a Drug Giant. Here’s How to Delete Your Data If That Freaks You out.” Business Insider, Business Insider, 25 July 2018, www.businessinsider.com/dna-testing-delete-your-data-23andme-ancestry-2018-7.
Harris, Paul. “Final Twist to Tale of Henrietta Lacks, the Woman Whose Cells Helped the Fight against Cancer.” The Guardian, Guardian News and Media, 31 Mar. 2013, www.theguardian.com/world/2013/mar/31/henrietta-lacks-cancer-research-genome.
TEDxTalks. “I Steal DNA from Strangers | Heather Dewey-Hagborg | TEDxVienna.” YouTube, YouTube, 1 Dec. 2014, www.youtube.com/watch?v=666Kq95xm1o.