Necessary Symbiosis: What Happens When Science and Government Work Together (and When They Don't)

By Vyshnavi Karra

According to a 2019 Pew Research Center study, only 35 percent of Americans report a great deal of confidence in scientists to act in the public interest. With Necessary Symbiosis: What Happens When Government and Science Work Together (and When They Don't), scientist Vyshnavi Karra intends to change that.

In the age o

• Language: English
• Publisher: New Degree Press
• Release date: Dec 7, 2020
• ISBN: 9781636761787

Book preview

Necessary Symbiosis

What Happens When Science and Government Work Together (and When They Don’t)

Vyshnavi Karra

new degree press

copyright © 2020 Vyshnavi Karra

All rights reserved.

Necessary Symbiosis

What Happens When Science and Government Work Together (and When They Don’t)

ISBN

978-1-63676-642-3 Paperback

978-1-63676-172-5 Kindle Ebook

978-1-63676-178-7 Digital Ebook

To my parents and friends for being wonderful beta readers.

To the rock of my life, David Farina, Jr., for being my inertia to write this book.

Contents

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Introduction

Part 1

SETTING THE STAGE

Chapter 1

How we got here

Part 2

WHEN THINGS GO WRONG

Chapter 2

Pandemics

Chapter 3

Climate change

Chapter 4

Anti-vaccination

Chapter 5

Data privacy

Part 3

HOW SCIENTISTS CAN ADVOCATE

Chapter 6

Personalized healthcare

Chapter 7

Using data for good

Chapter 8

March for science

Chapter 9

Conclusion

Acknowledgments

APPENDIX

I do not share your view that the scientist should observe silence in political matters, i.e. human affairs in the broadest sense. The situation in Germany shows whither this restraint will lead: to the surrender of leadership, without any resistance, to those who are blind or irresponsible.

—Albert Einstein

Introduction

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Imagine your child has a neurological disorder and the only doctor in your state willing to treat your child thinks their word is law. That somehow their expertise in the field of medicine trumps your observations of what the medicine is doing to your child. Going from an outgoing, adventurous kid to an introverted kid with new phobias. And every time you try to explain to the doctor, Look, my child is changing in front of my own eyes, they blame you for the changes. Not the medicine. You, the parent. It’s your fault your child has new phobias, even though the only thing that has changed is the medicine.

Would you stay with this insensitive doctor?

My parents didn’t.

We had just moved from St. Louis to New Jersey in 2004, right before I started fifth grade, and we were searching the state for just one doctor to take on my brother’s case.

My brother’s first seizure happened when he was just four months old. By the time he was one year old, he had up to fifty small seizures a day. As he got older, the number of seizures diminished to about twenty and then down to about ten a day. But even then, they were debilitating. After every seizure, his teachers and my parents were essentially back to square one. He would forget much of what was taught to him—the concept of time, basic addition and subtraction, walking without falling—up to that point.

When my brother was five years old, he underwent a brain surgery at the St. Louis Children’s Hospital to remove half of his hippocampus after doctors pinpointed the source of his seizures. The hippocampus is essentially the brain’s memory bank, with a section for long-term memories and a section for short-term memories. But once the seizures started in the other half of his brain, the doctor said it was a matter of managing the seizures rather than trying to find a cure.

As he got older, his seizures subsided, but other behavioral issues appeared: bipolar disorder, autism spectrum disorder, attention-deficient/hyperactivity disorder (ADHD). Because of his autism, his life had to be rigidly structured, and I had to adapt to that kind of lifestyle. One clear example is that dinner in the Karra household had to be at exactly 6:00 p.m. Otherwise, there would be trouble. So, I ate dinner at 6:00 p.m. and had a small snack around 8:00 p.m. if I got hungry again.

When we moved to New Jersey, the doctor who berated my mom prescribed Lyrica® to my brother as an add-on drug to treat his seizures since they were occurring from a localized area. But after being prescribed Lyrica®, my brother became a different person.

He went from a rather outgoing child to someone who preferred being indoors, from being able to ride a bike to no longer being able to balance on uneven surfaces. He went from being more or less phobia free to someone with phobias to everything: loud noises, large crowds, specific scents, specific textures. But most of all, my brother gained a lot of weight, almost one hundred pounds in a year.

But the doctor still blamed my mother, not the medicine he prescribed, despite the fact that we did everything we possibly could to mitigate the weight gain.

It’s baffling to me that this doctor ignored the evidence before his very eyes. I’ll never forget the callous way he treated my mother during those visits, and all the times she would cry afterward when she thought I couldn’t hear or see her.

It is because of that doctor, though, that I became interested in neuroscience, genetics, drugs, and healthcare policy. I saw that scientists wrote jargon-y journal articles on how drugs can affect the brains of mice and how genetics play a role in drug side effects, but I didn’t see that translate to better healthcare policies or education policies. And I saw instances of doctors having a holier than thou attitude toward patients they are paid to treat.

Growing up as the sibling of a special-needs individual made my childhood very different from most others. It was filled with doctor visits, specialist visits, medicines with long names, and my brother taking different medicines multiple times a day. I’m not saying my childhood wasn’t full of wonderful memories. There were plenty of those, like road trips all over the US (because my brother couldn’t fly). But the main thing I remember is watching my parents struggle to navigate the complex US healthcare system.

My parents fought tooth and nail for every little thing. They fought to have my brother moved from the local school district so he could go to a special-needs school, and they fought for the school district to pay for that. They fought to have a school bus come pick him up and got the school district to pay for it. They fought to have the local high school, the one I graduated from, allow my brother to be a water boy for the after-school sports activities. They fought for the school to pay for an aide to be with him during that time and to have the bus drop him off at that local high school instead of our home one day a week.

Former Governor Christie’s policies made the healthcare environment even more complex for individuals like my parents to navigate. For example, he privatized a lot of the programs run out of the Department of Children and Families.¹ We were lucky because we had a great care manager for my brother. But not everyone was that lucky. Because families relied on private and local programs, rather than ones run by the state, not everyone could afford them or had the means to go to the programs. These types of policies need to be developed with input from healthcare workers, education experts, and social service workers, not be developed to pursue an idealized goal of small government which only benefits the few and not the masses, especially those who need government aid. Without establishing one government agency that oversees all programs and has a good deal of transparency, there will be opportunities for fraud and abuse.

It’s because of the science-based advocacy that my parents continually worked for that my brother is happy at a great group home with loving and caring staff. Not every parent of a special-needs individual is as lucky as my parents. Not everyone knows how to navigate the system in addition to taking care of a special-needs individual 24/7, 365 days a year. And some don’t have the time to learn how to navigate that system. So many special-needs kids are not in the right position to be able to work at day programs or join group homes after they turn twenty-one.

Advocating for those who don’t have a voice, like special-needs kids, is how we can help improve their quality of life. The road can be long, difficult, and frustrating. But it’s critical. Scientific advocacy is not just beneficial for special-needs kids; it can benefit society as a whole in a range of topics from climate change and natural disaster recovery to pandemics.

This is why I decided to pursue a minor in political science in addition to my chemical engineering major as a Rutgers undergraduate student. I wanted to learn more about the complexity of healthcare policy in the US and took classes I believed would help me understand how politics can affect science policy. And although I’ve decided to pursue my scientific side by joining a chemical engineering PhD program at Northeastern University, I’ve continued to learn as much as I can on science policy. I’ve even joined the Northeastern Graduate Science Policy Group e-board to help students at Northeastern become better science communicators.

How Has Ignoring Science Affected a Generation?

I saw an interesting Buzzfeed article recently that sums up why many millennials are actually fed up with the state of society.² Millennials, or Generation Y, are those that are born between 1981–1996. The article lists all the once in a generation type of things that have occurred since many millennials were born. Some of these include:

•A recession at the turn of the century, brought on by the dot-com bust.

•A major terrorist attack on US soil on September 11, 2001, which drastically changed how the entire world interacted.

•A war in Afghanistan that somehow morphed into a war in Afghanistan and Iraq.

•The Great Recession in 2007–2008, which made it difficult for many of the older millennials to finance college. It also changed how younger millennials thought about finances because they watched their parents lose their jobs, their insurance, their houses, their cars, etc.

•The Affordable Care Act (ACA) passed in 2009. That lifted a burden off many millennials who needed health insurance but couldn’t afford it by creating a health exchange and allowing many to stay on their parent’s health insurance until they could afford their own health insurance. (And expanded Medicaid to cover people like my brother.)

•A major global pandemic in 2020 that could’ve been avoided if more countries coordinated in procuring tests, protective personal equipment (PPE), and data sharing.

On top of it all, I’ve watched how expertise has been eroded even further to the point where major crises that could have been avoided or mitigated impact my generation. Three main examples I have experienced in some way were September 11, the Great Recession, and the COVID-19 global pandemic.

Scientists are just one type of expert.

Intelligence reports in August 2001 showed evidence of a probable attack on American soil. The report showed that Al Qaeda operatives were in the US and planning something involving explosives and a hijacking. None of these reports were taken seriously enough.³ The attacks that occurred on American soil on September 11, 2001, resulted in the deaths of approximately 3,000 people. Expertise was ignored.

Economists studying the inequality gap raised red flags about reckless bank practices. Regulators became lax and believed in the corporation’s descriptions of the risk of investments, including subprime mortgages.

In the fall of 2007, the subprime mortgage market started to collapse, followed by the bankruptcy of Lehman Brothers, and Fannie Mae and Freddie Mac. The too big to fail organizations had to be bailed out while the country plunged into a major recession with massive lay-offs and unemployment in all industries. Expertise was ignored.

Intelligence reports warned of the potential of a global pandemic in late 2019 when the COVID-19 virus was becoming worse in China. White House officials did not start acting until the virus had already established a strong foothold in America. America wasted three months while other countries such as Australia and South Korea were stockpiling PPE and World Health Organization (WHO) diagnostic tests. The US government, on the other hand, did very little. Expertise was ignored.

Real expertise must pass three tests. First, it must lead to performance that is consistently superior to that of the expert’s peers. Second, real expertise produces concrete results. A chess player, for example, must be able to win matches in tournaments. Finally, true expertise can be replicated and measured in the lab. That’s ideally why their expertise and advice is used to set policies, guide investigations, and help investors.

Sometimes expertise might go against what people in power want to hear, but true leadership is listening to opposing viewpoints, recognizing the merits, and incorporating the experts’ advice into the agenda. And sometimes the experts get it wrong, but that doesn’t mean all experts are part of some conspiracy theory to create chaos in the world. Oftentimes, ignoring expertise can have devastating consequences, not just immediately but also long-lasting.

Why Scientific Experts Are Often Ignored by the Government

Trust in science has become a hot-button issue when it really shouldn’t be. A 2019 Pew Research poll showed that those who have science knowledge have a higher confidence in science than those who don’t have science knowledge. That makes sense. People don’t have confidence in things they don’t understand. But looking at the partisan breakdown is rather frightening: 43 percent of Democrats have high confidence compared to 23 percent of Republicans.⁴

This divide shows that we are living in two different Americas. One America is not affected by scientific misinformation, while the other America is.⁵ The America that is not affected is one where individuals recognize that science evolves and changes. The America that is affected by misinformation is one where some individuals want a quick fix, without realizing the science of tomorrow may contradict the science of today, and that’s how science works. One America is willing to change their beliefs in the face of overwhelming evidence and the other America will just blame the evidence for existing in the first place. But this problem is not just along party lines—not even a majority of Democrats have confidence in science!

So why is that?

One of the main issues confronting scientists is their inability to share their research and findings in a way an average person can understand. They present facts, data, and analysis with scientific jargon, complex sentence structures, and word choices.

Facts are important, but I don’t think facts alone are enough. Facts alone don’t speak for themselves, and sometimes facts are twisted to suit the purposes of certain groups of people like those who are against vaccines, more commonly known as anti-vaxxers.

I think science and scientists in general need to become more adept at advocating, not just trying to state the facts.

If the experts aren’t advocating for policies which reflect their scientific findings, then who will? More importantly, why are those who oppose science doing the things the scientists aren’t—advocating?

Scientists should be doing the same, by flooding social media and communicating their research in an effective manner, in order to counter all the pseudo-science, weaponized science, or false information out in the world today. Misinformation works because it communicates pseudo-science effectively to the public. To counter the pseudo-science, scientists should make their research more understandable to the public. And non-scientists should amplify the voices of scientists and advocate for science too. Because that kind of advocacy helps everyone, not just those who conduct the research.

I saw that kind of science-based advocacy firsthand at home, and I realized just how effective it is.

How Do Scientists Become Advocates?

Scientists need to change the way they are communicating and connecting with the public and the government. In order for scientists to effectively advocate for their own research, they need to become involved and become more effective communicators.

In this book, I will argue that there needs to be a working relationship between scientists and governments—a necessary symbiosis for society to progress and to deal with 21st-century problems.

Scientists should weaponize social media for good to counter the misinformation online, and symbiosis between science and government should be strengthened to ensure future policies are scientifically sound.

I want scientists like myself to