A recent breakthrough in science is causing a whole lot of unnecessary hoopla for – non other than – commercial interests.
Here’s a bit of a background. HeLa is a cervical cancer cell line that was derived from Henrietta Lacks in 1951 without her consent. This cell line has been used EXHAUSTIVELY in scientific journals – something like 74,354 according to PubMed. Sequencing the HeLa cell line has given humanity some of our greatest accomplishments – vaccines and a much better understanding of cancer’s mechanism.
A lot of concerns have been raised with regards to consent. No one had asked Mrs. Lacks for consent at the time to collect her cells.
Recently, scientist from the European Molecular Biology Laboratory – EMBL – published a breakthrough article on the HeLa cell line. Here are some highlights:
- They created a comprehensive map of HeLa, that can help scientist if they choose to use HeLa in further studies.
- HeLa is mutated BEYOND recognition – no human could ever have a cell structure such as HeLa’s. This is probably one of the most important implications. I will explain below.
Let’s take for instance rare genetic disorders. Multiple Endocrine Neoplasia Type 1 – MEN1 – is a rare genetic disorder that occurs in about 1 in 30,000 individuals. MEN1 is classified as a genetic mutation that affects the individual’s endocrine system by developing tumors – neuroendocrine tumors (NET).
HeLa isn’t used to make inferences on genetic diseases, rather it’s used as a model to understand basic biology. So, how does the study impact scientist that will be using HeLa? For genetic disorders, more and more patient-derived materials should be used, no brainer. If you are using HeLa for genetic purposes (testing what genes do etc.) then the data can inform people how best to do that.
(Note: Scientists are currently experimenting with MEN1 gene therapy, which looks promising, contact me for the publication’s name)
The kerfuffle: Three years ago, Rebecca Skloot wrote a book on Henrietta Lacks, detailing her story, her descendants and such – I’m sure it’s a good read. She wrote an op for the NY Times about how inappropriate it was for the scientist to use and publish the results of their studies without consent from the Lacks – it gets better. A movie is in the works based on Henrietta’s life, yeah. Did I mention that Oprah is involved? Yeah, it just got really interesting, eh?
The issues with Rebecca’s op is that it’s written in such a manner that doesn’t call out EMBL or any of the scientists, which doesn’t give them an opportunity to respond to the matter publicly. Additionally, other media sources are blowing the consent issue out of the water.
Here’s how I see things.
Consent: Does one have to ask for consent from descendants of the original specimen “donor”? I doubt it.
Did all 74,000+ papers that used the HeLa cell line ask for consent from the family? Nope.
So why the big fuss about this study? I think it’s due to commercial interest. Book + movie = cash cow. Rebecca is protecting her turf, and these scientists are being used as an example.
I got tweeted by an individual named David Kroll about how if I were to read the book I would know that Skloot has the Lacks’ best interest at heart. I’m sure she does, she needs their consent for the movie and for the book! Also, Kroll happens to be a member of the book’s review board. *ahem* commercial *ahem* interest. I was informed by Mr. Kroll himself that he did the review for free, and there is no commercial interest. I stand corrected. However, this doesn’t mean that other interests may be at stake. Not to mention his op on Forbes – I think – is biased, given his close ties with Rebecca.
To be honest, after reading the publication I wanted to read the book, but after ALL this kerfuffle, I refuse to purchase her book because it would contribute to disregarding break through scientific findings for the sake of her commercial interests.
What’s next? Is she going to ask that ALL the authors of ALL HeLa publications ask for consent from the family?
It’s like that scene in Legally Blonde when Reesse Witherspoon asks the plaintiff if he kept a track record of every ejaculate he’d ever had with respect to his paternal claims.
What about all the breakthroughs we’ve had? By stating that scientific publications – specific to HeLa – require consent for publication is like saying that the family wants to “take back” everything that was accomplished through HeLa – I don’t think that’s the case.
There is no doubt that the Lacks’ should be compensated. Where would one begin? EMBL? Vaccines? Publications? That is one huge can of worms.
Concerns About Insurance Companies:
So there’s talk about how insurance companies will leverage genetic data to potentially refuse coverage to individuals. IF that were to happen – you can’t refuse someone insurance because of their genetic make-up as that constitutes a determinant of health – government policies should be implemented to FORBID insurance companies the privilege of using genetic data for insuring individuals. May I also point out, that this is a “problem” in the US. Also, let me point out that the more we know and understand about genetics, the higher the chances that we won’t need insurance companies, since we will be able to treat individuals based on their genetic makeup. No premiums, no disease – win/win.
Is an apology warranted? Probably. Is a retraction warranted? No.
How much do you want to bet that EMBL were asked to pull the publication?