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How much of my data belongs to me? The Henrietta Lacks Story


Imagine these two scenarios...you're at work and you've just polished off a latte. You throw the cup in the lunchroom garbage but unbeknownst to you, a co-worker takes the cup. It contains particles of your DNA where you lips have touched the lid. That discarded tissue is then cloned. In the second scenario, you go to the doctor to receive treatment for a tumor. The doctor needs a biopsy, which you assume will be used to diagnose your condition. However, this tissue sample is then cloned, creating a line of cells that is commercialized and widely used in research.


The difference between these scenarios? One is from an episode of Black Mirror and the other is the real life story of Henrietta Lacks. Born in 1920, this year marks Henrietta Lacks' centennial year. She passed away in 1951 leaving behind a legacy that shaped modern medical research. (Nature, 2020)


Who owns your cells?

Henrietta Lacks, a cancer patient, unwittingly provided the source material for the HeLa cell line. (Wikipedia) Henrietta's cells were the first ones that were found able to survive in a lab environment beyond a few days. This property made the cells extremely valuable for medical research. HeLa cells have since lead to many medical breakthrough's and over 11,000 patents and millions of dollars of commercialized applications. (Wikipedia) However the Lacks family did not know that Henrietta's cell tissue was being used this way and only found out about it in the 1970s when researchers began to make inquiries directed at the family. Then, in 1990, a US Supreme Court decided (in a different but related case) that "discarded" tissue was not the property of the person who supplied the tissue*. (Wikipedia) Thus, the Lacks family was never financially compensated for these contributions.


Synthetic Health Data

In Canada, there must be informed consent for research involving human participants, including the collection and use of bio specimens. However, what led me, inadvertently, to the Henrietta Lacks case was a recent press release about generating synthetic datasets for use in healthcare. Access to large datasets is an important part of advancing the use of AI in medical research and healthcare.


One of the proposed ways to protect privacy is to generate synthetic data. Synthetic data is essentially data that's artificially created using mathematical models to meet various statistical properties found in a pertinent real world data. In some cases it's based largely on real world data, and in other cases, it's fully manufactured. As you might imagine, there can be trade-offs in efficacy depending on what choices are made in order to generate synthetic data sets.


While synthetic data can address issues of privacy in the use of medical data, it does raise other questions, such as who gets to decide how the data is created. Synthetic data places a lot of power in the hands of the researcher(s) creating the data sets to determine its actual properties. Furthermore, if the synthetic data is based on real-world data, how much, if any, of that underlying data do the patients who generated it have claim to?


In other words, how much of our data is actually our data?


I think the Henrietta Lacks story is instructive. HeLa cells are "artificially" grown in a lab, yet the source material originated from an actual person. Even our most personal data - our biological cellular data - was not upheld by a 1990's US Supreme Court as being the property of the person who generated it. This article goes into some of the legal rationale behind this line of thinking and illustrating the complexity of property rights. The basic argument is that so many iterations of the cell have evolved and so much research and IP has been generated that in one sense, the original material no longer exists.


Which brings me back to the Black Mirror scenario. In this fictional story, a rogue tech-CTO decides to make clones of people who have "wronged" him in some way, and then uploads them into game world modeled on Star Trek, where he tortures them in perpetuity. If we have no claim to our "discarded tissue", does that set the stage for anyone to take our hair, nail, skin, saliva and then use that material for whatever purposes they see fit? In Canada, as of 2004, the answer is no ,when it comes to human cloning (yet other things are permissible), but in the US, it's still a grey area.


If we step back from bio specimens and think about other data we "discard" in public - whether that's search data, meta data from using our devices, or biometric data like finger prints, voice or visual likeness - all of that also has value. Who has the right to that information and for what purposes? Right now, with very few exceptions, the answer seems to be anyone who wants to gather, aggregate, process and sell it.


A final bit of trivia: the hospital where Henrietta Lacks was being treated and where her cells were harvested without her consent was John Hopkins University, which has gained global notoriety as the aggregation and mapping source for COVID-19 data. John Hopkins was one of a handful of hospitals at the time that provided care to Black patients. HeLa cells are currently being used in COVID-19 vaccine research. (Nature, 2020)


Resources


*There were updates in early 2019 to the Common Rule to attempt to balance patient rights with research priorities.


I leaned fairly heavily on Wikipedia as a resource to learn more about Henrietta Lacks as well as this Editorial in Nature, just given my time constraints these days. However, if you have time, check out the book, The Immortal Life of Henrietta Lacks by Rebecca Skloot or the movie of the same name (starring Oprah).


If you're interested in pursuing this topic in a more academic way...

Here is an interesting article that explores the question - who owns your cells?

Here is a paper that explores the validity of synthetic data in clinical research

There are numerous papers examining the medical ethics surrounding Henrietta Lack's case, here's one to get you started


Also, check out the work of Dr. Ubaka Ogbogu, Assistant Professor, University of Alberta in the Faculty of Law. His research specializations include health law and ethics/bioethics and he shared the Henrietta Lack's story with me.


If you want to be entertained with dystopian science fiction scenarios, check out Black Mirror, especially the USS Callister episode.







 
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©2019 by Ethically Aligned AI.