The perils of parachute research

In 2010, Rosa Hoekstra was feeling adrift in her career studying how genetics and biological processes affect psychiatric and neurodevelopmental conditions. Her research at the University of Cambridge was predominantly lab based, and Hoekstra says she felt unsure about its impact, wondering whom it would benefit and how.

She therefore leapt at an opportunity to tackle a short-term project helping psychiatrists and mental health experts in Ethiopia write training materials for local community health workers. The visit opened her eyes to the need for more studies of developmental conditions in low-income settings, where most of the world’s children live. In Ethiopia, for example, children constitute close to half the population, yet autism is both understudied and undertreated there.

In the years since that project, Hoekstra and other autism researchers have focused increased attention on developmental conditions in the less wealthy nations of the “global south.” There was no doubt about the need: A 2017 analysis found that more than 90 percent of papers published between 2006 and 2010 in three influential journals—Child Development, Developmental Psychology and Developmental Science—focused entirely on Western patient populations.

But as interest in studying autism in low- and middle-income countries has grown, so have moral and practical worries about “helicopter” or “parachute” research. The terms refer to work led by investigators from affluent countries who visit poorer countries on the fly, collect data from vulnerable populations and leave without involving local researchers or feeding their insights back to local communities. Recently, some scholars have also raised concerns about “domestic helicopter research,” in which researchers “drop into” disadvantaged communities within wealthy nations, extract information and leave without offering much in return to the people they worked with.

These patterns worry Hoekstra, she says, and she isn’t alone in her concern. They reflect “a very colonial mindset of ‘let’s collect data with you guys, and then we will become first authors and you guys can stay somewhere else in the middle,’” says Gauri Divan, an Indian pediatrician who runs Sangath, a nonprofit organization based in Goa that has pioneered child development services in India.

There are better ways forward, say Hoekstra and Divan, who worked together as guest editors of a special issue of the journal Autism, published in January. In an opening editorial, they highlighted multiple ideas to counter the negatives of parachute research. They and others argue that scientists from high-income countries need to be prepared to listen, learn and build capacity to support their colleagues in low- or middle-income countries. They should credit local scientists appropriately in resulting publications. And science journals can implement editorial practices that are friendlier to authors from the global south—something Hoekstra and Divan did for their special issue.

Such efforts will not only foster stronger research and health-care communities around the world but will also ultimately lead to better science.

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he perils of parachute research and the need to incorporate local expertise were apparent to Hoekstra from the moment she started working in Ethiopia, she says. During her initial project, a joint study of autism services and attitudes in that country, her Ethiopian collaborators helped her see the wisdom of de-emphasizing the genetic aspects of autism in public-facing communication. In the local culture, a focus on genetics could extend stigma to the whole family of an autistic child.

Hoekstra says she also needed to rethink modes of communication. Her proposal to mail or email surveys to health workers was kindly but firmly vetoed by her Ethiopian colleagues, who cited limited mail services, internet connectivity and literacy levels as obstacles. Instead, they used trained data collectors to carry out oral interviews to gather data.

Another thing Western scientists need to realize, Hoekstra says, is that although they think they are helping their developing-country colleagues by giving lectures, training students or bringing grants, they are also creating a lot of extra work, particularly when they visit. She recalls that an Ethiopian colleague had to spend several days in a visa office to clear numerous international visitors to attend a scientific meeting in Addis Ababa. “That’s something we need to be mindful of,” she says. “Especially when you are the senior researcher.”

As a researcher and medical doctor from the global south, Divan has experienced parachuting from the other side—although not, she points out, in her autism research partnerships. But even when scientists from the global north try to approach collaboration with care, she observes, they may underestimate the unequal power dynamics.

A main reason for the inequality is that there are not many resources for autism science locally: When she began working in the autism field, Divan battled a persistent local view, she says, that “autism is a Western problem.” Even now, many trials and much of the funding for them originate in the West, which tends to put non-Western scientists in a subordinate position.

Her younger or less-established colleagues are especially vulnerable to exploitative research practices, she says, such as being expected to give up control over data that they gather or being excluded from research papers.

Unlike their Western colleagues, scientists in low-resource settings may not have the privilege of protected research time—a period in which they are free from administrative tasks and can focus on building their careers as investigators. Collaborators from wealthier nations would do well to keep that in mind.

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ortunately, there are many things scientists can do to help their colleagues in low-resource countries, Hoekstra and others note. The first is to be aware of the challenges those colleagues face. Researchers need to ask questions of the entire team to ensure the research plan is realistic and equitable.

From the planning stage forward, everyone should have input on research priorities, the timelines for gathering data and writing up studies, and the way that different team members will be recognized for their work. These points cause tension in partnerships when they are not discussed up front, Hoekstra says.

The onus is often on researchers from high-income countries to start these conversations. Indeed, because of the skewed power dynamics, their collaborators may not feel comfortable voicing a critique or raising questions.

Lauren Franz, associate professor of psychiatry and behavioral sciences and global health at Duke University, notes that scientists from high-income countries can also do self-checks by looking at where their global south colleagues are included as authors on publications and provide opportunities for first authorship. They can also interrogate their findings’ local relevance, impact and potential implementation.

Franz, who has led projects tailoring early autism interventions in Africa, does not see these steps as uniquely important to parachute research or global health. “I think this is just good research practice,” she says.

As an added corrective, many researchers from high-income countries are investing in capacity building, which involves both training scientists and working with institutions to develop relevant research programs and infrastructure. The latter step, Franz notes, is crucial. “You can train people, but if the university doesn’t see the work that’s done in autism research as a priority, people won’t have jobs in academia at the end of the day.”

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rantmakers and journal editors can also take steps to increase opportunity and equity for researchers in the global south. Franz, for instance, receives support from the U.S. National Institutes of Health’s “global brain” funding mechanism, which stipulates that grants include a capacity-building element and that recipients report on this aspect of their project.

Building capacity is also baked into Divan’s 7 million pound ($9 million) grant from the U.K. National Institute for Health and Care Research to develop evidence-based universal health coverage for autistic children across India, Sri Lanka and Nepal. By 2027, when that project is finished, it will have trained four Ph.D.s and six master’s students across the three countries where the study is being conducted, Divan says. “I think it’s going to be amazing.”

As for addressing equity at journals, Divan and Hoekstra helped show the way in the special issue of Autism they guest edited. For example, to be considered for inclusion, papers had to have authors from the country where the research was conducted. To the delight of Divan, Hoekstra and the other guest editors, the journal has since adopted that requirement into its guidelines. The journal is also piloting a free language-editing service—first developed for the special issue—to improve the readability and clarity of manuscripts that would otherwise be rejected prior to peer review on the grounds of style and language.

But there is only so much that can be done at the publishing stage, says David Amaral, professor of psychiatry and behavioral sciences at the University of California, Davis, and editor-in-chief of Autism Research, the journal of the International Society for Autism Research (INSAR). He says the journal has seen a significant increase in paper submissions from low- and middle-income authors.

“Thirty percent of our papers now come from China,” he says. But many are rejected before getting to the review stage, usually because the language is so rough it makes understanding the science difficult, or because of flaws in the study design.

Amaral has been discussing this hurdle with members of INSAR. One idea, he says, is for the society to create a sounding board to advise researchers from low-resource countries on crucial design aspects, such as whether their study has enough participants to reliably answer the question posed.

It could also let authors submit early drafts of their papers for review. “I think getting in at an earlier stage could promote better science,” he says.

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mproving the science is the ultimate goal, Hoekstra and Franz say. This is not just a matter of learning to share the stage but of bringing in other perspectives to protect the integrity of the research and to make sure it is fit for its chief purpose: understanding the needs of people living with autism wherever in the world they may be and designing interventions that will help them.

Hoekstra adds that insights gleaned in low- and middle-income countries may be applicable in low-income communities within Western nations that lack autism services. “Work in Ethiopia or Kenya can help you devise strategies for reaching underserved groups in wealthy countries too.”

Divan says there’s growing recognition in the autism research community that people from a relatively low educational base can become competent interventionists. For example, Divan’s frontline workers who train caregivers to deliver autism services only need formal education up to eighth grade. That is very useful for scaling up treatments in low-resource areas anywhere in the world, she says.

For all its challenges, collaboration among co-investigators from widely different backgrounds has its upsides: fostering creativity and mutual learning. Hoekstra’s Ethiopian colleagues value her determination to practice equity, says Abebaw Fekadu, a psychiatrist based at Addis Ababa University who has known Hoekstra for more than a decade.

Hoekstra, who says she often reflects on her role as a white European working in an African context, notes that the long-term goal is for local experts to take the lead. For now, she says, she feels she adds value, especially when she centers her African colleagues’ career development in her work and uses her role as a senior scientist to influence university and funder policies for the better. But, she says, “if my contributions to capacity building are successful, then ultimately my role in the research process should change and move from initiating and leading the research to a role supporting work initiated and led by African scholars.”

In the meantime, there are unresolved challenges around where the power rests and who decides what research gets funded. “Are we going to fix it within the next day or two? No,” she says. “But I think there is more awareness … I think we are moving in the right direction.”