By Kenneth Stone Breckenridge
Surrounded by dozens of beakers, vials of various liquids, an emergency eye wash station, and a white dry erase board, Veronica Robinson sits attentively in a classroom that was, in some sense, built by her great grandmother, who lived 10 miles away in Turner Station.
We are all the result of the genetic material of our ancestors, but the cellular makeup of Robinson’s great grandmother, Henrietta Lacks revolutionized the way we understand the human body, saved countless lives, and created a billion dollar industry.
The Lacks family has faced heartache and disappointment for a very long time. It all began In 1951 when 31 year old Henrietta Lacks, a black woman living in Baltimore County, Maryland, died at Johns Hopkins hospital from cancer. The researchers there took and kept the cells from her tumor without her knowledge and permission, nor that of her family. Researchers discovered that her cells were “immortal”, reproducing indefinitely in a lab under the right conditions. The cells proved useful for research so they continued to use it.
The Lacks family would find out 20 year later that a rapidly growing industry was developing from Henrietta’s cells. The (HeLa) cells were grown and tested for their response to diseases, drug, and a variety of conditions to understand how our body works. The era of biotechnology had begun. Her cells lead to a polio vaccine nearly eradicating the disease, made in vitro-fertilization possible, made the discovery of DNA and RNA possible, they have been in space, and created the HPV vaccine we give our teenage daughters to prevent them from getting cervical cancer, the kind that took Henrietta’s life.
Despite the advances her cells allowed, Lacks laid in an unmarked grave and her family couldn’t even afford health insurance. When the Lacks family discovered what had happened, they were initially surprised and angry about being kept in the dark, but that anger was eventually replaced with pride.
Although much was taken from them, they have since begun carrying their grandmother’s legacy to advocate for minorities such as themselves, and the poor.
Robinson, Henrietta’s 29 year old great granddaughter now speaks to the public on behalf of her Lacks’ legacy. She describes herself as “wearing a million hats.” She leads youth symposia and mentors recipients of the Henrietta Lacks Dunbar Health Science Scholarship at Hopkins, which her family once thought of as a bogeyman that would come and kidnap you for medical experiments in you were out after dark.
In 2013, the National Institute of Health (NIH), which sometimes funds research using the HeLa cell, agreed to give the Lacks family some control over who could access Henrietta’s DNA sequence. Now, Robinson sits on the HeLa genome board with scientists and researchers at the NIH, helping approve and disapprove requests from companies and institutions wanting to use her great-grandmother’s cells.
“[I do it to] be sure that whoever is using it is not going to do anything that’s going to affect my family and not going to hurt someone else and that they are doing ethical science,” she says. “In the past, my family was the last to know.”
Not long after Robinson began sitting on the HeLa genome board, another board member asked, “Why is it important to be here and sit at this table?”
“It was easy for me,” she says. “I told them It was important because usually people of color are the topics of discussion at the table and I have a duty to speak for people who come from my background and demographic so they can have a voice.”
She knew her purpose, but she still wondered if she was prepared for what lay ahead.
She had little more than a high school education and no scientific training. “I still didn’t know who I was as a person and I didn’t know the legacy I would carry and I sat around all these brilliant scientist and researchers and just feeling like I’m out of my league,” she says. “I’m from east Baltimore, a block from Hopkins where my great-grandmother went to receive care and died. Not many people get to see those types of things and I felt I needed to build on it.”
Robinson, recognizing her knowledge deficit and unable to pay for college, searched for alternative ways to learn and found a nonprofit school with an accelerated Biotechnology program, with no tuition and limited spaces.
The Biotechnical Institute of Maryland (BTI) sits in a multi-office building on West Pratt street, less than a mile from the University of Maryland. Its mission is “to fill a need for specialty scientific training of and placement assistance for entry-level biotechnicians.”
Dr. Margaret B. Penno, a cancer researcher at Johns Hopkins, founded BTI with a grant from the Abell Foundation in 1998, after finding herself frustrated by the difficulty of retaining technicians.
BTI takes unemployed and underemployed people and trains them to work in almost any biotech laboratory. According to the U.S. Bureau of Labor Statistics, the Baltimore City unemployment rate is the highest in Maryland and exceeds the national rate by a percentage and a half. It’s a lot higher with minorities in particular. While the national unemployment rate is dropping, the city’s rate hasn’t budged in a year. BTI created a model they say can put people to work and they just happen to focus on exactly what Robinson need to learn, biotechnology.
On the first day of class, over 20 students sit at several long desks with a black top. They scribble notes while eyes frequently look up to review overhead projector. “This will be your intro into biotechnology,” says Dr. Timothy Fawcett, the Science director at BTI as he lectures Robinson and her classmates, gesturing toward the projector.
All of the students are black women although men have also attended the school. Some students are dressed casually in jeans, a top and maybe a pair of Nike Cortez. Others are in business attire and heals. All are focused on the lecture. It is the first day of what will be nearly five months of lessons that include: The Growth of Bacteria, Intro to Polymerase Chain Reaction, Working Under Aseptic Conditions, and Contamination Control.
Separate paths lead these women this classroom today, but the thing they have in common is they all are betting that BTI will train them to find jobs in the biotech sector, giving them stability, a living wage and the opportunities that come with an education in a ever growing industry.
BTI believes they have 20 years of students’ successes to prove that their faith in them is not misplaced.
For Robinson an education at BTI is one of the pieces to a puzzle that fortify her knowledge of biotechnology so her decisions at NIH are well informed and her advocacy is reinforced.
“I was basically self taught. It’s like you have a black and white TV It’s great, but you’ve never seen anything on a color TV. It’s not until you see things in color that it comes to life for you. I had the history, but by going to BTI things started developing color.”
Robinson says the school curriculum and workload were no joke.
“When somebody says its a free program you don’t expect a college experience,” she said. “BTI is definitely thorough. The course was hard.”
Not only is the school challenging, but it is also selective. They accept around 22 percent of about the 180-220 people who initially apply. Students take assessments and are interviewed by instructors and directors. Out of those selected, 73 percent graduate and three-fourths of those students go on to find jobs within their field of training. They make on average nearly $30,000 a year to start. That’s light years away from where most of them are before attending the school.
“The average profile of our participants is late 20s and early 30s,” says Kathleen Weiss, the Executive Director of BTI. “A single mother, often of more than one child.”
Weiss says most students come with a array of challenges that in combination with a rigorous academic workload would break the average person. “We’re talking about barriers,” she says. “Childcare falls into that, transportation, stable housing, behavior modification, being in debt, and criminal expungement can fall into that.”
That’s where Donna Carolina comes into the picture. She is a case manager that has worked for Catholic Charities for 18 years. They have had a partnership with BTI for over a decade and Carolina has assisted cohorts for five of those. She helps each student address a myriad of life issues and often will attend external appointments with them.
“I do an assessment to identify any barriers. If it’s mental health, I refer them out. If it’s somebody that they need to sit and talk to, I sit and listen,” she says in her office at Catholic Charities. “I have even given out referrals for housing. If we have a class of 26, we can have half of them with major barriers.”
Carolina says without the life-management component of BTI’s overall model they would have a much higher turnover. In her professional experience, she hasn’t seen schools commit to managing students’ personal obstacles. She believes all learning institutions should invest is assisting students with tackling major barriers that may otherwise be impossible without guidance.
“You would have less drop out in high school because somebody cares,” she says. “You gotta keep it real, some people in Baltimore don’t have nowhere to go. So its like ‘How can I be successful if nobody cares? I’ve had so many people tell me this: ‘You care enough to help me get through the program.’”
Carolina helps students conquer personal issues, but says her most difficult case was a situation of mental barriers as opposed to situational. A student struggled because of emotional trauma. A car accident took her ninety thousand dollar a year job and her health. She struggled from back pain, anxiety, and depression. She would visit Carolina often with uncertainty.
“I sat there and talked to her, ‘You gotta look forward. You can’t look behind you. It happens to the best of us, but you have to move forward and not sit in our pitty game. It was 10 years ago.’ Some people hold on to stuff and it doesn’t allow them to move forward.”
What seems like insensitivity was just personalized attention. Carolina practiced firm caring to move the student ahead and emphasized goals and doing what is necessary to achieve them. The woman graduated and thanked her for listening, remaining practical, and not giving her ‘the pity treatment’ as others had given.
BTI also works with organizations like Vehicles for Change to help students get cars to get to school and their job after graduation. They work with the Homeless Persons Representation Project which provides pro bono expungement advice, helps with housing issues, child support, and other issues that would prevent students from focusing of their studies and most importantly, being stably employed.
Considering external challenges was not always a part of BTI’s model. Weiss says two years after the school opened, she took the reigns and had no clue that addressing students personal obstacles would be a part of the school’s focus. “When I first started, I thought we were just providing training,” she said. “Very quickly we found out it has to be more than just the training. In order for the training to be effective you have to be addressing the entire person and that means you need to be sensitive and try really hard to not be intrusive and be viewed as a trusted resource and friend.”
Robinson agrees. “I went to a city program that trains [certified nursing assistants] that was ran by nuns,” she says. “They were quick to throw you away. Most programs would have been like ‘your problem, your issue’. They didn’t care if you catch up. Some people have lost faith and hope in themselves to complete a program like BTI, but BTI builds that hope again. This is like no other program.”
Camaraderie, and in Robinson’s cohorts case, a ‘sisterhood’, was another component that each student uses to succeed. The students are close. During a break on the first day of class, four students where already huddling together in the hallways sharing notes, discussing the class and laughing with each other. Robinson says this closeness between the women made the challenges and barriers much more bearable.
“We built a sorority because we don’t have men in our class,” Robinson says. “It was like a strong sisterhood. I watched a lot of students go through a lot of things that would have probably broke a lot of people. We carry each other through.”
She feels indebted for the experience she had at BTI. “I tell them all how grateful I am and if there’s anything I can do I will do it,” she says speaking of her lab partners and the school.
Because programs like BTI are often smaller scale and Robinson is afraid they will go away. “These programs often go away,” she says.
BTI hasn’t gone away yet. This year is its twentieth anniversary. So, what has kept BTI equipping students with biotech skills for 20 years? Pure grit from the students, the dedication of the staff and frankly, money.
While chatting with Weiss in her office at BTI, I overhear someone who sounds excited.
“She hasn’t seen it yet,” a staff member says, walking in the office. She approaches Weiss in the middle of our conversation.“Good News!” she says as she shows her a message on a cell phone. Weiss reads for a moment. “Hot damn!” she says, repeatedly pounding the desk with her hand. “It’s actually more than you asked for,” the staff member says smiling.
After a high five, Weiss who is visibly emotional, turns to me.“So in the world of fundraising you put awful lot into each proposal that you submit. It’s the only way we keep the doors open and the lights on,” she says. “We submitted a two year $250,000 proposal to the [The Harry and Jeanette] Weinberg foundation. The Weinberg foundation had been a continuing supporter for BTI for 10 years. The text message… says, ‘Hi Kathleen, good news… 290,000 rather than 250,000 awarded over two years.’”
It’s expensive to run a program like this. The school says it costs $8,500-11,400 to teach each student and spent $798,628 in 2017 according to IRS form 990, which displays the financial information of a nonprofit organization.
The school receives funding in three ways:
First, BTI submits yearly proposals to even be considered for philanthropic donations. The Abell Foundation, The Annie E. Casey Foundation, Wells Fargo, the United Way of Central Maryland and others all team up to give funds to BTI according to an annual report from Baltimore Workforce Funders Collaborative, an organization that focuses philanthropic resources toward workforce development. Some of the respective organizations present BTI’s accomplishments on their websites.
BTI also conducts professional development workshops called BioSci Concepts. Companies pay for professionals already working in biotechnology to learn advanced techniques and procedures in their field.
The Mayor’s Office of Employment and Development also contributes. Baltimore city’s contributions to BTI and similar nonprofits amount to a very small part of the city’s budget. Educational grants account for $19.71 million of 2018 operating budget. For perspective, the Baltimore City Police Department has a budget of $482.67 million.
The University of Maryland Baltimore, McCormick, American Red Cross, and A&G Pharmaceutical are just a few companies that now employ BTI graduates and the industry is growing. Many of the graduates that work at these places started out in an internship, which BTI arranges for each student after graduation. In 2017, The Maryland Life Sciences Advisory Board sent recommendations out to put Maryland in the top 3 globally-recognized BioHealth Innovation Hubs by 2023. Some of those recommendations were solely based on hiring talent.
Johns Hopkins University, which is ranked second in cell biology research according to U.S. News and World report has also gotten the message. Candice King is a Research Technician in their research division and a 2013 BTI graduate. She says her life was transformed after attending the school.
“Up until that point, I was working in kitchens,” he says. “I was a cook and I’d been doing it for 12 years and I felt stuck. I didn’t want to go back to school because of all the student loans and the debt. (At BTI), the only cost was my time and my focus. The payoff was fantastic”
Now King works in genotyping research. This is the process of determining differences in the genetic makeup of cell DNA and the exact process that discovered the unique ability of Henrietta Lacks’ cells. How does she feel about her new path?
“I’m absolutely proud,” she says.
She is one of many Baltimoreans whose lives have transformed by a school that says they want to give struggling people the opportunity to work in a growing industry they’ve been at it for 20 years.
And to Robinson, it means being taking back the power that was taken from her family over 60 years ago. “I’m a full time advocate now,” she says.
She travels representing her family and works with various celebrities. “(I’ve visited) just about everywhere but Hawaii. I’ve gotten an opportunity to hang with Oprah several times. President Obama.”
She is currently is set to continue her advocacy this year as an ambassador for President Barack Obama’s Precision Medicine Initiative which aims to use research and technology to develop individualized medical care for patients.
She is also the executive director of the Henrietta Lacks Legacy Foundation which exchanges timeshares from people not currently using them for a tax break so patients that must travel to distant hospitals for treatment can use them. They also help supplement some income for patients that miss work or have debts to address while attempting to get well.
“I can see my great grandmother deep inside of us. The essence of that woman had been missing for so long. I advocate because she can’t speak. I advocate for people who don’t normally have a voice,” she says. “I never wanted to be just a seat filler. I wanted to be very knowledgeable so when I sit at these tables and I’m making these big decisions that I’m not going off what someone else tells me. I’m representing my family. I’m representing my great grandmother.”