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Opinion / Viewpoint

Why I want to march for science

by  /  14 February 2017
The Expert:

Jonathan Sebat

Professor, University of California, San Diego

On 22 April, I plan to participate in the March for Science in San Diego, California.

I am not marching in opposition to the president or to the Republican Party. I am marching in support of the common interest of all Americans.

As a working scientist, I am no stranger to a cultural climate in which science is at odds with public opinion. When I was beginning my career as an autism researcher in the early 2000s, the public was gripped by fear about a potential link between vaccines and autism. A small, flawed study touched off this health scare. Later, we learned that study was fraudulent, and extensive follow-up research resoundingly refuted any link between vaccines and autism.

But the fear had already had a negative public health impact: a drop in vaccination rates that led to outbreaks of preventable diseases such as measles.

Donald Trump’s election to the presidency has raised many questions about whether policy will be properly informed by scientific evidence. I first became concerned about this during the lead-up to Trump’s presidential campaign, when he began tweeting about his belief in the link between autism and vaccines.

He reiterated these beliefs in the presidential primary debates. Trump has also made puzzling statements indicating that he does not believe the scientific consensus on issues such as climate change.

This misleading rhetoric occurs in a polarized political climate in which politicians and their constituents disagree on issues ranging from the economy to immigration — even though they can readily retrieve facts from reliable sources. Disagreements are no longer limited to the interpretation of data, but extend to the data itself.

Common cause:

If a major function of the scientific enterprise is to promote policy-making based on scientific evidence, scientists need to speak out.

I plan to march in solidarity with a diverse scientific community to promote science and technology as engines of prosperity. I will march to advocate for a government that relies on empirical evidence to devise policies that serve the common good.

America wins when, as a nation, we invest in scientific research, science education and evidence-based medicine. If you asked just about any American whether they agree with this statement, the response would be almost unanimously ‘yes.’

Science itself is not a partisan issue. If your son or daughter brings home a report card with A’s in math and science, you are a proud parent regardless of whether you are a small business owner from Omaha or an entrepreneur from Silicon Valley. Likewise, if you are struggling with a serious illness, you want medical decisions to be made based on the best knowledge available, regardless of your political persuasion.

Despite the value of good science to all people, we should not take for granted that public opinion and health policy will always be in line with the best scientific evidence. When specific health or environmental issues become strongly politicized, the gap between what the science says and public opinion grows.

Painstaking pursuit:

Having experienced how fear and misinformation can distort public understanding of science and harm public health, why would I want to bring scientific issues into the world of politics? On the contrary, I want to ensure that science is free from political agendas.

I want the scientific enterprise to continue to advance knowledge, and to make discoveries that offer solutions to public health problems. I want to ensure that scientists are free to communicate the results of their research without undue influence from politics.

The American system of government is rife with irony. If we want to guarantee our freedom from political oppression, we must embrace the idea of political advocacy.

The march will send a clear message to our political leaders that scientists are dedicated to the painstaking pursuit of knowledge and will not allow divisive political rhetoric to undermine our mission. Importantly, the March for Science must not begin and end with a day of protest in cities throughout the country.

We must engage in science communication outside of the scientific community. If experts in a field choose to raise their voices only after conflicting interests have seeped into otherwise uncontroversial scientific issues, it will be far more difficult to communicate objectively with government officials and the public. We should seek to engage early and often, with the goal of cementing our common values.

Jonathan Sebat is chief of the Beyster Center for Genomics of Neuropsychiatric Diseases at the University of California, San Diego.

TAGS:   autism, community, policy

6 responses to “Why I want to march for science”

  1. Ethyl says:

    You know, parents have been here before. They “magically” caused neurological disease for years. I have to admit with Epilepsy having been a major factor in autisms, that was a pretty outstanding feat.

    Twenty years ago, I went to a Compuserve Science forum, thinking I would find a rational reason why my son had a severe reaction to his DTwP. You know, possible causality. I was told I was “looking for something to blame.” Jeesh…Why are kids with Dravets thousands of times more likely to have a serious reaction to vaccines,and 15 times more likely to be autistic? Where is the curiosity? “It’s all in the genes.” That’s like saying…these things just happen. Oy…

    Science is losing respect from the common man because so many spend time on the web calling parents idiots, killers, and worse. Maybe they should get their skeptics all in a row before belittling the common man for his stupidity. Yes, I am angry. I love science….but it is not meant to be a weapon.

  2. Ethyl says:

    That didn’t take long.

    • Elizabeth B Torres says:

      Science is crucial but it needs more rigor in the world of autism. Much of what is called science in autism research IS NOT science. This needs to be openly discussed because the methods of enquiry and analyses are fundamentally flawed at the moment. And research desperately needs to hear those affected. It NEEDS to work with parents, self advocates and legislators that ultimately impact their lives. There is no other way. This two-way conversation has to happen for progress to be made.

    • Elizabeth B Torres says:

      We can all work together and help each other gain a better understanding of what those affected know best. Let me share with you one of our posts where this invitation is extended to the scientific community and to society at large

      • Ethyl says:

        My son was born on the cusp between sensory integration (Jane Ayres) and ABA, which had not become the dominant political force, Ie, $50,000 insurance mandates that started coming into being. He received OT– and Speech, which was also very helpful, and amounted to social skills training in the early years. Being a language disorder, at least in the younger years before many autistics surpass their peers later on, speech was very helpful. His verbal IQ went from 50 at age 4 to 126 at age 18. That’s the way a lot of autistics roll. Like they are made to be late bloomers by nature. OT helped, he is motorically different, a late bloomer there, also.

        I was always thankful we missed the ABA route. “Should we all be deprived of our free will? “, taken from your paper, is the crux, to me. I am fiercely independent, and couldn’t take that freedom from my son. One other thing that you addressed indirectly that seems so important to me, with a teaching background, is accommodation: looking to the child for answers, rather than a pre-set construct–one size fits all.

        Your paper had a lot of wisdom. Science doesn’t do wisdom well…that is where they could use help.

        • Elizabeth B Torres says:

          thanks Ethyl. I hear you. I interviewed some 120 people from the autism world before writing that piece. I was much too frustrated with the politics of science in the autism field and the way financial conflicts of interest and personal gain drive most operations. There is always a way to do better so we (my lab) are teaming up with a student of Jane Ayres (Lucy Miller) and many others to help OT’s get the outcome measures they so desperately need to track gains and get insurance coverage for the families. We have the measures already and the proof of concept. It is just a matter of adapting them to each clinic and their specialties to work out the proper codes for coverage. It is a long and arduous path for all of us in the spectrum, but we will get it to work. Hang in there to see change in the positive direction come soon. All the best to you and your son

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