Sickle Cell Disease- Therapy Success, Anti-GE Failure

While the internet's 'experts' and celebrity doctors proclaim genetic engineering to be a dangerous and unnecessary foray into 'playing God", a young woman's life has changed forever because of a revolutionary therapy.  The story appeared on the CBS News magazine 20/20 on December 29, 2019. 

At this point, Jeannelle Stephenson appears to be cured of Sickle Cell Disease, a debilitating genetic disorder that caused her immense pain and suffering. 

Ms. Stephenson suffered from "bone crushing pain" and a sedentary lifestyle because of the disease. She considered herself "middle age" in her 20's because the disease kills its victims early. She was not alone, as Sickle Cell Disease affects about 100,000 Americans.  I covered the story and modern therapies on the Talking Biotech Podcast. 

First her bone marrow was destroyed using chemotherapy.  At that point she could produce no more blood cells.  Then scientists introduced stem cells genetically altered with the corrected genetic information. After a transfusion of these stem cells, they started to produce the correct cell types, eliminating sickle cell disease. 

Today she leads a normal and active life. 

I could not watch it without crying.  It is so powerful to see technology end suffering and change lives. I'm so grateful to the scientists, and the technology that allows it to happen.

But I also was choked up because this should have happened years ago, and while Jennelle is a success story many are suffering today with the disease.  The vocal opponents of genetic engineering and the politically-imposed restrictions on stem cell research delayed these kinds treatments. They should have been reaching patients years ago and in wide deployment, and we should be well past celebrating a single success story.   

In this episode I saw hope for the future and contempt for those that sought, and continue to seek, restrictions on technology than can help others, simply to satisfy an empty belief or political motivation. 

Jeffery Smith's Confession

I thought he was going to apologize.  Instead he asked for more money to keep the crazy boat afloat, as his non-profit is as bankrupt as his scientific messages. It was only a matter of time. 

Jeffrey Smith is the author of books and producer of documentaries, the origin of hundreds of talks, articles and websites, all extolling the dangers of genetic engineering. He once was one of the prominent figures in that arena, and maybe still is. However that that arena has transformed into a tiny handful of science-free experts continuing to convince the credulous that their food world is about to collapse at any second, and that Monsanto is around every corner with a frosty stein of cancer-causing glyphosate with their name on it.   

Nobody is buying it anymore.  Two decades of fear-based messaging have influenced a culture by condemning failed agriculture, a corrupt regulatory system, and poison food supply.  But people keep eating. Sure there are boxes with butterflies and expensive boutique grocery outlets that exploit the ill-informed, but in general folks understand that food is safe. The most visible breaches of food safety often come as food poisoning from organic produce, the stuff that is supposed to cloak us in a happy silo of security. 

Smith's video is from October 19, 2019, so after two months of the campaign there were zero comments and under 500 views. Nobody really cares anymore.

His request for funding hinges on the tired old tropes of the "dangers of GMOs", and now includes rhetoric about the "threats of gene editing".  The appeals are logical leaps that ignore the science, but that's Smith's calling card.

What he should do-- confess his actual mistakes.  The guy has an audience, maybe a somewhat visible presence in that community.  He should simply state that he was wrong, that there are no health issues, and that his new position will be to build confidence in the safety of the food system, help American agriculture, and ensure that the technologies can move faster to help those in need worldwide.  He could make a point of  promoting universities and small companies, pulling share away from the multinationals, and helping responsible technology reach those they were meant to serve. 

Like the Food Babe, a little confession of ignorance, and a commitment to team with scientists to ensure food abundance and safety would raise his stock through the roof.  We like when people see the errors of their ways.  They are forgiven and welcomed into the scientific community with loving and open arms. 

But alas, he's just digging in deeper.  

At least nobody is paying attention. 

Learning to Live with Losing a Passion

I'm grieving a change in my life, and while some may consider this over-dramatic, I'm wrestling with my new reality and ultimately what this will be.

For 17 years my central roles as a professor have always been research and teaching.  I took on 5.5 years of wonderfully burdensome departmental administration and didn't miss a beat in publication, finding funding or mentoring students. 

In May of 2018 I was asked to step down as Department Chair. It was a tremendous shock to me, and grieving process unfolded as I learned to refocus my concern away from the management of a large group, big budgets, endless need, and the hiring and mentoring of junior faculty. It took me almost a year to find hard joy in intense work again, despite being surrounded by great faculty and wonderful scientists and students in my lab. 

It still was a very productive year that I look back on with a great sense of accomplishment.  

While my expertise is in genomics, molecular biology and biotechnology, most of my talks are in how to change the perception of science and  agriculture by rethinking our communications strategies. 

One of the saviors was my visibility in science communication. I still had a feeling of contributing to the greater good, and found even larger meaning there. If I could not contribute as much to departmental and university function, I could influence those that seek to control the perception of science and agriculture on a national and international stage. It was amazingly fulfilling.

I have an extensive background in communication from a nuts-and-bolts level, as well as good formal training in persuasion and rhetoric. I started to listen to respected experts, like Tamar Haspel, Johnathan Haight, and Daniel Kahneman. They helped me understand my mistakes in connecting with the public. I found ways to take their concepts and weave in others, presenting talks for farm, industry, and university audiences that intertwined psychology, sociology, customer service and understanding communication in social networks. 

The theme was earning trust. How do we develop trust in today's hypercharged atmosphere of polarization and outrage? 

I enjoyed great success, delivering the program in Germany and Australia, traveling the USA and speaking to many commodity groups and universities about modern values-based communication and strategic trust building. 

Winter in the northern states and Canada is a time of partial rest for crop agriculture.  It is the only time for conferences.  I had an ambitious slate of conferences scheduled for talks, including some huge venues and great audiences. 

That ended in November of 2019, as I was directed to cancel all of my talks going forward.  My time in teaching communication was dead in an instant, that passion left behind.  I was even told that the Talking Biotech Podcast was to end, as "it is not good for the university" and I needed to "do your job". 

(My group published 9 peer-reviewed papers, I brought in lots of grant money and helped design and teach a new class in the honors college, I was kind of doing my job pretty well)

Contacting the organizers of standing commitments was horrific. They had websites and schedules, some very elaborate.  Luckily most of them understood that this was beyond my control.  Luckily, luckily, good people I trust (that are not affiliated with my university and therefore not subject to administrative penalty for carrying my message) were willing to step in and fill the gap.  Thanks to Vance Crowe and "Farm Babe" Michelle Miller. 

Since, I have been invited to speak at three other events, all that I had to sadly decline.  I have been assigned new teaching duties in the fall and spring semesters, so that will eliminate any possibility of taking on talks that require travel.  Plus, I was told that my speaking to these groups "has no benefit to the university", so there's that. Strangely, it seems like universities would covet a faculty presence leading an important national discussion. 

 Through this all it became apparent that the folks in my university administration (that I support, respect, defend and appreciate) don't have a clue what I do, what the benefit is to the university, to the broader scientific enterprise, and to agriculture.  I would assume I was just wrong, except I read the reviews and the accolades. We are changing how we talk to those that fail to understand what agriculture really is. It is working.  And while I am out teaching communication skills to others, my most fervent attempts to communicate up within the university have failed miserably. 

There's a lesson in here that I recognize from years of attempting to reach people with recalcitrant positions.  People make decisions not based on reason or evidence. They make decisions based on other influences, and when entrenched, are nearly impossible to shift.  Listening to understand is shut down.  

It pains me that this happens in a university, and that crippling mandates can be handed down, that communication can be stifled, and that effective training ceases. These communications activities are those encouraged by our most elite scientific organizations, and I have won awards and recognition for my efforts in that space.  I'm not getting more invitations because of a dud product.

It also hurts me more because I'm rehabilitating a Google-based perception and reputation.  After the New York Times published a highly biased and factually challenged article about me in 2015,  I was told that I would need to do as many publicly-facing acts of visible good work as possible.  I was doing that, exploiting modern media, using podcasts, writing, and speaking gigs to raise my positive visibility.  Things were going very well. 

That all ends now.  It is time to shrink, disappear from visibility, and retire to the walls of a laboratory and a classroom.  That's not a complaint, it is a statement of my new reality.  And while I will miss public interaction and contributing to the broader issues in food security, profitable agriculture and adoption of new technology, I will certainly raise the bar inside my new little box. It's how I roll. 

I do not think that my new constraints will make me more productive, in fact it will hinder what I do.  As someone that performs best in a scatterbrained world of many activities, I'm already seeking opportunities to expand my wife's business, streamline and (literally) seed some efforts toward long-term retirement, and focus on keeping myself in top physical shape.  That's where I need to be now. 

I also contemplated leaving the university environment altogether. I've performed well in higher education, and have learned that if I don't have value or autonomy within the university, I certainly do outside of it.  I'll spend 2020 examining my options and likely will pursue new interests, business opportunities and return to public speaking in 2021. 

That all will hinge on how well my new reality gives me job satisfaction, a sense of value and a sense that others above me care to listen.  I don't respond well to mandates and restrictions.  I chose a path in the university system because I revel in academic freedom, and the license to pursue that which I consider valuable as a scholar.  This spirit has been violated in the last round of restrictions. 

The university justifies its actions by pointing to two twitter foibles that I committed back when my identity was stolen and paraded around the web. It left me with massive hassle and cost, and I acted abnormally in an abnormal time, which is to be expected. Situational weirdness under extreme duress does not accurately define who we really are, yet in this case has been used to justify the new restrictions. 

Forward.  One of my favorite words.  This weekend I'm finishing "Man's Search for Meaning" by concentration camp survivor Viktor Fankl, again.  I turn to that text in challenging times because it reminds us that even under the most extreme situations we have to find meaning in suffering.  My suffering as a recognized professor with a great paycheck, insurance, a home, food, family and life is pretty marginal. This too shall pass. 

But when you always strive to lead, do the best, and define a new edge, you need to have that passion and meaning.  I'm working on redefining that now, and hope to reinvent myself again after learning to live in this new reality. 

Talking Biotech 217 - Precision Medicine

Can genetic sequence data be used to guide diagnosis and therapy?  Scientists are finding that analysis of genetic information can reveal important information about drug sensitivity, probability of disease development, and other health risks and benefits.  Dr. Julie Johnson describes the use of genomics in the next wave of precision medicine, describing how the future of health care will benefit from understanding patients at the molecular level. 

Listen to this episode here. 

Talking Biotech 216 - Nitrogen Fixing Bacteria in Plants

Plants need nitrogen to live, so farmers provide this nutrient through fertilization.  However, nitrogen is a gas that makes up the majority of air, but plants can't use it in this gaseous form. A conversion needs to take place to "fix" nitrogen, binding into a plant-usable form. This has been done using the Haber-Bosch process, an industrial form of nitrogen fixation that greatly expanded agriculture.  This process requires energy in production and transportation, and runoff can pollute water resources. Azotic Technologies has identified a bacterial species that inhabits the plant, and fixes atmospheric nitrogen. This could represent at least a partial way to supplement the need for exogenous nitrogen application.  

Listen to this episode here.