By reading any of my content, you may have the impression that I lean a little left. In other words, I’m not one to agree with our current administration. However, Trump’s White House is considering an executive order that would mandate open access for all publications of federally funded research. Some academics, politicians, and publishers are lobbying against open access. I say, why not?
Currently, all federally funded research is embargoed for one year after publication. During the embargo year, articles can be accessed for a fee or via subscription to the journal. Publishers’ main source of profit is institutional subscriptions. Nature charged $6,008.00 for an institutional subscription in 2017, which isn’t too jarring of a price tag, until we consider that Nature Publishing Group offers 80+ journals for subscriptions ranging from $1800 - $7300. Unfortunately, many companies, colleges and universities cannot afford journal subscriptions.
The White House has not confirmed that the open access executive order is being considered; however, publishers are worried. Numerous advocacy groups, think tanks, publishers, and academics are urging the White House to uphold the one-year embargo. Otherwise, the academic publishing industry is facing an upheaval. Critics of the rumored executive order fear the lack of revenue for publishing companies will cause a major loss in publication jobs and an adulteration to the peer review process. On the other hand, supporters believe open access will further scientific research and help instigate reform of the current publication infrastructure .
Here’s why I’m supporting open access:
All things considered, I understand no policy is unequivocally perfect. Open access will absolutely have undesirable consequences. Publishing fees may increase for researchers, and publishing jobs could be lost due to reduced revenue. If open access is approved, the government and the academy must provide solutions to these issues. Federally issued grants can include money allocated specifically for publishing. Furthermore, any open access bill should also incentivize academic institutions to implement their own publishing organization, similar to MIT press. An influx of independent academic publishing agencies will compensate for jobs lost within subscription dependent publishers and, perhaps, improve the current state of academic publishing.
I have a large family: 4 brothers and sisters, 4 sibling-in-laws, 11 nieces and nephews, and a whole bunch of aunts, uncles, cousins, and “cousins” (relatives with an ambiguous blood line so you just call them “cousin”). When I attend family gatherings, I get a lot of questions. Overtime I have developed vague, rehearsed responses for when I am asked about my PhD at family events:
Relative: How is school?
Me: It’s going well, I have no more classes. I am just working in a lab now.
Relative: How much longer do you have, a year or so?
Me: Probably three, but it could be four or five.
Relative: Oh! And how is research going?
Me: It’s going. Progress is slow but that’s how science works.
Relative: What exactly are you researching?
Me: I study cancer. (Usually at this point the relative is satisfied and I move on to another conversation).
Recently, my perspective has changed on how I should communicate science with my family. A couple of weeks ago I had lunch with my best PhD-friend, Matty, and his parents. Matty’s parents have master’s degrees in computer science and biology. They are very invested in Matty’s research and it is remarkable how well they empathize with Matty’s (and my) PhD journey. While Matty and I were speaking about some STEM education work, Matty’s mother said something remarkable, “Technically as researchers who are funded by the government, you are public servants. Your work is given to you by taxpayers, with confidence that your research and knowledge will benefit society. It’s important that you share with others what you are doing.”
I was awed by this idea. When working in a lab it’s easy to exist in a bubble. My PI, lab mates, and myself rarely discuss research from the perspective of increasing human intelligence. Rather, it’s more like: “What can we publish?” “When can we publish it?” “How many publications should I have before I graduate?”
The idea that I am a public servant has grounded me and has given me purpose. I am not doing research solely to advance my career or to pad my CV. I am doing research to further the collective human knowledge, and I should educate those around me who are interested in my field.
When I go home for the holidays this year, I intend to share my PhD and research experiences with my family. However, there is a problem. Speaking with the average person about science is not easy, but it is a valuable skill to have. Here are some tips for speaking to friends and family about your research:
IMAGE CREDIT: WONDERY.
Earlier this year I was obsessed with the story of Elizabeth Holmes, the entrepreneur who built a medical device company valued at $4.5 billion. Her company sought to revolutionize the blood test industry by making devices which could run numerous blood tests on only a drop of blood. The problem? Her devices did not work, and the data she presented to investors were fraudulent. She knowingly marketed a severely flawed product that could not produce accurate nor reproducible results. And, thanks to the marvelous reporting of John Carreyou, her fraud was ousted. Holmes's company crumbled, and in the matter of months her net worth plummeted from $4.5 billion to $0. Three personality traits of Elizabeth struck me as the root of her malice:
To reiterate, I was obsessed with this story. I listened to the podcast (The Dropout), read the book (Bad Blood by John Carreyou), and watched the HBO documentary (The Inventor). And of course, I’ll be watching the new Hulu series, The Dropout, starring Kate McKinnon when it airs.
This past week I had the pleasure of learning about another biotechnology injustice by listening to Wondery’s podcast, Bad Batch. I was thrilled to learn that Laura Beil had returned for a second podcast after her success with Wondery’s Dr. Death (unequivocally my favorite podcast of all time). Bad Batch begins with the investigation of three patients who receive stem cell treatments only to be hospitalized in the days following the treatment. The patients complained of fevers, vomiting, spasms, and immobility to name a few symptoms. And from this event, Laura Beil begins an investigation that goes on to question the validity of the stem cell industry.
****Spoilers ahead…if I’ve sold you on Bad Batch, go and listen.****
The three hospitalized patients were injected with umbilical cord stem cells contaminated with E. coli. The cells were manufactured by a hurried start-up, Genetech, and distributed by Liveyon. Liveyon scrambled to save its image from the incident. The company blamed the doctors, stating that their product was free of contamination at the time of distribution. “We’re a victim as much as the patients who were infected.” Said the CEO of Liveyon, John Kosolcharoen1.
As Laura Beil digs on, we find Kosolcharoen has a shady business reputation. Actually, he's pretty much a scum bag. When he started Liveyon he had just been indicted for receiving illegal kickbacks for a $15,000/tube pain cream. But start another medical venture he did, after all, he just wants to help people…
As you may have guessed, the contaminated stem cells were not an isolated event. A doctor in Maine, John Herzog, tested the product on himself and almost immediately experienced severe pain. He went to the ER and discovered that he was infected with E.coli and an Enterobacter. He agreed to have a vial of stem cells he had purchased from Liveyon tested. The results? No detectable live stem cells were found in the vial. (Cue gasp and jaw drop).
Even after the incident in Texas with the three injured patients, Liveyon thrived. They marketed their product in “educational” seminars. Where salespeople made ridiculous claims that stem cells were a cure-all for Parkinson’s, arthritis, back pain, and even autism. That’s right, an asshole salesman apocryphally claimed that an autistic child who could not show affection was able to hug his mother after being treated with Liveyon’s stem cells. (At which point I was hitting my steering wheel and yelling, “fuck-ing ass-hole”).
By the end of the podcast Liveyon is still a success. Although it seems that Kosolcharoen is aware that the US Food and Drug Administration has a target on him. So… he is expanding overseas.
Throughout the podcast, I could not help but draw parallels between Kosolcharoen and Elizabeth Holmes. Similar to Holmes, Kosolcharoen was proud, impatient and lacked education in science. The growth of his company was not for the advancement of medicine and the well-being of others, but for the swelling of his own hubris and financial advancement. He refused to wait for proper research of their product before marketing and selling to the public. And, Kosolcharoen inherently did not understand the science of the stem cells he was selling. He is educated mostly by Google and Wikipedia.
So, let’s take a step back for some introspection, it isn’t easy, and it is certainly not my favorite thing to do. But as scientists it is necessary. Search yourself for signs of pride, impatience, and deficiency of knowledge within your research. I know I have been guilty of all three at one point during my Ph.D. In the future, I will improve on these issues to make sure that I am performing ethical, careful, and unbiased work.
I’d like to thank Laura Beil and Wondery for this marvelous piece of medical journalism. Since the podcast, Liveyon has shut down sales of their stem cells.
Still interested? even though you read the spoilers? Listen to Clean Batch. If you like this genre, I full heartedly recommend Dr. Death as well.