Reaching for answers

Hutch News

Reaching for answers

Researchers’ friends and family see scientists as conduits for hope

March 1, 2016
Reaching out

Scientists say they often field questions about their work - or general cancer research - from friends and family seeking advice or optimism.

Illustration by Kimberly Carney / Fred Hutch News Service

The urgent question came to her on Facebook, a friend seeking a lung cancer doctor. To answer it, Jenny Zhang tapped her strength: research.

Zhang, a lab technician who processes brain tissue and analyzes patient data at Fred Hutchinson Cancer Research Center, asked a physician in her lab to provide three names. She asked yet another physician on her team to give three more. One oncologist popped up twice. He became her recommendation.

Similar anxious questions come to Zhang from her Seattle church group – more cancer patients unsure where to get treatment.  She fields each with care, as if her advice is part of her job. In fact, she said, it is.

“I see our role in two parts – as a cancer researcher but also as a comforter,” said Zhang. “If you work in this field, this kind of thing happens very often.

“For anyone diagnosed with cancer, there is fear. Sometimes, a gut peace is all people need in that moment,” she said. “It’s amazing that, as researchers, we can actually comfort people in this way. I see us as a pipeline.”

Jenny Zhang

Jenny Zhang

Photo by Bo Jungmayer / Fred Hutch News Service

In Zhang's view, when scientists go into their communitues, they don't represent themselves, they stand for "the most up-to-date science progress" and the centers or labs for which they work. And when they talk about science, they "represent authority because you work with the best people in the world," she added. 

Beyond giving treatment guidance, researchers also hear friends or family pose questions about their lab work – largely to bolster their own hopes that big cures are coming

A 2015 Pew survey found that the majority of U.S. scientists say engaging with people beyond their labs – whether through informal chats, published blogs or media interviews – is a critical element of their careers.

Among more than 3,500 members of the American Association for the Advancement of Science (AAAS) who were surveyed, 86 percent reported talking “often” or “occasionally” with citizens about science or research findings. That rate of engagement was consistent across all surveyed age demographics, from scientists aged 18 to those 65 and older, the survey found.

“Tell family, friends and neighbors about your research,” one of the respondents told Pew. “Learn to talk about it in an interesting and exciting way that has meaning for the average person.”

In such moments, researchers say they consider themselves conduits of science – and their conversations with the public are an accepted occupational responsibility for anyone donning a lab coat. 

“I think a lot of [what] I get asked by my non-scientist friends when it comes to my research is usually in regards to ‘how does this relate back to me?’ ” said Aimee Littleton, a Hutch research technician. 

Aimee Littleton

Aimee Littleton

Fred Hutch file photo

In her job, she studies how large, complete protein complexes, called kinetochores, enable cells to divide and distribute chromosomes properly during cell division. In cancer, cells divide too much or have an improper distribution of chromosomes within them.

“I always try to start these conversations by telling my friends that understanding how things work is important to figuring out how to fix or mend things,” Littleton said.

“If we want to start finding cures to cancer, we have to first understand how it works – and with that, understanding how things work when they go wrong.”

But outside of friends or family, a portion of researchers are reluctant to speak or write publicly about their own lab work or about science in general, according to a 2015 editorial by authors with the American Society for Microbiology and the Columbia University College of Physicians and Surgeons.

That hesitation appears rooted in the feeling that “a professional penalty” will be levied for doing such outreach – a perception that fellow scientists will react negatively. This sentiment, the authors wrote, may be traced to the booming popularity of astronomer and astrophysicist Dr. Carl Sagan, host of the original “Cosmos” program, a public television hit first broadcast in 1980.

“This penalty is sometimes called ‘Sagan-ization’ after the late Carl Sagan, who was a brilliant communicator but who was rumored to have been denied membership to the National Academy of Sciences because he placed too much emphasis on his public career,” the editorial notes. “Such anecdotes discourage scientists from communicating with the public.”

That reluctance among a small segment of scientists may explain why gaps exist between what scientists generally assert and what most in the public believe. For example, 87 percent of AAAS scientists say climate change is occurring mostly due to human activity while 50 percent of U.S. adults hold that view, according to a separate Pew survey conducted in 2015.

'A source of wisdom' 

To that point, marine conservationist Dr. Carl Safina argued in a 2012 article that “scientists need to engage.” The Stony Book University professor also insisted that scientists have a responsibility to share what they know.

“Some people are best as teachers, others add illumination to hotly debated issues such as climate science,” Safina wrote for a publication of the American Physical Society. “… Don’t think you need to teach the public a lot of science facts. Instead, show what science is, what it means, why we need it.

“Find a way to have a presence. … Be a source of wisdom.”

That’s the role Heather Johns assumed for a family member who has struggled for years with a mysterious ailment – a gene mutation that makes it hard for her body to synthesize a key compound. The treatment seems simple enough: supplement the compound to restore her cells’ ability to do their jobs. But to better explain that to her family, Johns ventured into an area of science away from her day job. 

Heather Johns

Heather Johns

Fred Hutch file photo

At the Hutch, Johns is a research tech in the Bradley Lab. Scientists there study many disorders – including muscular dystrophy and cancer – where RNA plays an important role in disease initiation and therapeutic response.

Outside work, Johns’ family member has asked her several times to be a health translator of sorts, to break down the complex illness impacting her body.

To accomplish that, Johns’ family member gave her all of the physician-supplied information and reading related to her condition. Armed with that research, Johns dug into the involved biochemical pathways, learning them so well, she was able to teach many of her family members the basics about the condition.

“What I help translate to them helps them to make an even more informed decision about their healthcare,” Johns said. “I am, by no means, an expert scientist. I am … just barely out of undergrad and getting my feet wet in biomedical research.

“However, I know more than the lay person. And an ability to bridge that gap between the general public and the scientific community is an important aspect of not only my family’s health and my job but, also, what I believe in as someone who aspires to be a doctor.”

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Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith." 

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