By Kimberly Elmore | Student Member
Edited By John G. Bryan | Senior Member
All Intercom ethics cases are fictitious and are intended to provide opportunities to highlight and discuss ethical issues in technical communication. Any resemblance to real people or organizations is coincidental. Please send your responses to intercom@stc.org. Responses will be printed in an upcoming issue of Intercom as space permits.
When Dr. Baker handed the Request for Proposals (RFP) to Monique, she offered a simple rationale: “They have money. We need money.”
That fact didn't keep Monique from feeling very uncomfortable with the writing assignment. The Broglio Foundation was seeking proposals for clinical research grants related to autism, a perfect fit for Dr. Baker's neuropsychology research group, which was planning a three-year study on how the autistic and non-autistic brains process a series of cognitive problems. The multiple scans for each research subject would prove expensive. A Broglio grant would be very welcome, but Monique knew about the Broglio Foundation and did not like their fundamental ideology of autism.
Through fMRI brain scans and EEG measures of brain activity in autistic and non-autistic people, Baker's group had concluded that the autistic brain is not “deficient,” but rather processes information differently than does the non-autistic brain. Their research showed differences in visual and auditory perception, including a significant strength in visual reasoning in the autistic brain. Such findings could help doctors, therapists, educators, parents, and autistic people better direct their treatments, teaching strategies, and interests.
Monique is not a disinterested bystander when it comes to autism research. Mya, her eight-year-old daughter, has autism. Although Mya's functional speech is limited to single words and short phrases, she has a gift for singing, including perfect pitch, and prefers playing games on the computer to playing with her peers. Despite Mya's communication and social challenges, Monique cannot imagine her daughter without autism—and does not want to.
That sense of autism as part of her daughter's identity puts Monique in the same camp as Baker's research group, which publically supports the sociopolitical positions of the neurodiversity movement, arguing that society should accommodate autism as a biological difference, not treat it as a disease. Neurodiversity activist groups believe that the characteristics of an individual's autism are essential to identity and that society should celebrate that diversity. Such groups vehemently oppose the autism “cure” that biomedical groups hope and work for.
On the other side of a sometimes bitter divide are some biomedical groups, such as the Broglio Foundation, that believe environmental factors cause autism by acting on children with genetic abnormalities. Such groups strive for cures with biological treatments or for prevention through genetics. Monique found especially offensive some of the foundation's fundraising campaigns, which she thought portrayed stereotypes of autistic children and aroused public fear of an autism epidemic.
“I have some real concerns about doing anything that advances the Broglio Foundation's agenda,” Monique said.
“Science is not politics,” Dr. Baker responded. “You know how expensive our kind of clinical research is, and the foundation has goals for scientific data that match up well with what we do.”
“What if the data we generate ends up helping Broglio's advancement of a ‘cure’ for autism?”
“We develop the science. How other organizations use the science is something we can't control.” She smiled at Monique. “I understand your concerns, but focus on the science, and I'm sure you can write a great proposal.”
“So, I assume this great proposal won't mention our public position in support of neurodiversity?”
“Let me repeat: science is not politics. Keep ideology out of it. Besides, the committee that will review the proposals for Broglio is a group of scientists, clinicians, and researchers, not fundraisers or promoters. If we are going to help change the direction of autism research, we have to become a part of the scientific community studying autism so we can influence the national research agenda.”
Monique left the meeting still uneasy. Is it unethical to apply for money from an organization whose orientation fundamentally opposes the goals of Baker's research group? She turned for guidance to the American Medical Writers Association's (AMWA) Code of Ethics, where Principle 4 demands that “Medical communicators should work only under conditions or terms that allow proper application of their judgment and skills. They should refuse to participate in assignments that require unethical or questionable practices” (see www.amwa.org/default.asp?id=114).
Monique is not sure that she can write the grant. As the lone medical writer for the group, she can't turn the proposal over to anyone else, and she certainly doesn't want to damage the respect she has earned from Dr. Baker and her colleagues. Still, she has many questions. Is there a way to write the proposal without compromising her convictions? Could Dr. Baker accommodate Monique's conscientious objection to writing the proposal? Should a science writer's personal politics influence her work decisions? Are science and politics really separable? Whatever her decision, Monique won't feel comfortable until she can support it with a well-reasoned ethical argument that addresses her questions.
Kimberly Elmore (kimberly.elmore@ttu.edu) is an online PhD student in Texas Tech University's Technical Communication and Rhetoric program. She has taught professional and technical communication in online, hybrid, and face-to-face formats as an instructor at Louisiana State University Alexandria (LSUA) and received her graduate certificate in technical communication from the University of Alabama in Huntsville (UAH).
