"Africa should not be left behind": Addressing diversity gaps in psychiatric genetic data

A global collaboration, NeuroGAP-Psychosis, aims to plumb the genetic diversity of psychiatric disease in Africa. Three African site leaders discuss opportunities, challenges, and why the right time for this study is now.

South African GINGER fellows and NeuroGAP study team members. (Credit: Anne Stevenson)
South African GINGER fellows and NeuroGAP study team members. (Credit: Anne Stevenson)

Roughly 96 percent of the genetic data available for psychiatric research today are derived from people of European ancestry. As a result, a great store of knowledge regarding possible genetic and biological mechanisms for psychiatric disorders — and opportunities for developing new ways to treat them — lies hidden.

A collaborative project that brings together the Broad Institute's Stanley Center for Psychiatric Research, the Harvard T.H. Chan School of Public Health, and five collaborating centers across four African nations represents one attempt to discover those hidden opportunities. Neuropsychiatric Genetics in African Populations (NeuroGAP)-Psychosis merges population-scale genetic sampling with research capacity-building efforts to:

  • increase the diversity of genetic data available for disorders like schizophrenia and bipolar
  • foster trans-Atlantic research partnerships
  • support, through the GINGER initiative, the growth of a robust neuropsychiatric genetics research community in Africa

The Broadminded Blog talked to three NeuroGAP-Psychosis site leaders — Lukoye Atwoli from Moi University in Kenya, Dan Stein from the University of Cape Town in South Africa, and Solomon Teferra from Addis Ababa University in Ethiopia — to learn more about their hopes for NeuroGAP, the opportunities and challenges they see, and why they think that now is the time for this kind of effort.

Why did you choose to get involved in NeuroGAP-Psychosis?

Lukoye Atwoli: When I first heard about it, I was convinced that this project was necessary for improving the training, research, and care infrastructure of my country. I believe it will contribute in a big way to the knowledge of the genetics of mental illness globally by increasing data from African countries.

Solomon Teferra: As an African researcher in mental health, I see this as a great opportunity. Although several studies have been done on the genetics of psychosis globally, they didn’t involve African populations, causing serious questions regarding research equity. NeuroGAP should help fill this gap and make Africans beneficiaries of any potential new discoveries.

To you, what is the most important aspect of NeuroGAP?

Lukoye Atwoli (Credit: Sairama Photo Studio)

Atwoli: The inequity it seeks to address, both in data and in the capacity for scientists in my country to conduct similar research. We hope this project will result in improved care for mental illnesses, increased neurogenetic research productivity from Africa, and improved training for mental health and other scientists in Africa.

Dan Stein: The fact that capacity building, in terms of people, infrastructure, and knowledge, is front and center. Ninety percent of the world's research is done in high-income countries, where only 10 percent of the population lives. The global mental health research endeavor is not weighted toward where most of the world lives.

Teferra: While gene discovery and treatment and prevention strategy development are probably the most important, the capacity-building activities will have a long term impact on the research capacity of the participating countries. A good number of young researchers from these four nations will be involved in this endeavor.

What do you think the biggest opportunities are for NeuroGAP-Psychosis?

Atwoli: The opportunity to contribute to the body of knowledge in neuropsychiatric genetics is priceless, but the opportunity to improve the expertise of local scientists and train upcoming scientists is greater, because it will contribute to the sustainability of neuropsychiatric research in Kenya.

Stein: I’m very hopeful we’ll learn new things about the genetics of psychosis from this study. But more immediately I’m excited about the opportunity that this study brings for collaboration across sites, and for capacity-building.

Teferra: This project offers a rare opportunity to participate in a global research endeavor with the potential for major breakthroughs in identifying the etiologies of psychosis and developing novel treatment approaches. It provides the opportunity build research capacity and improve infrastructure for local researchers and institutions.

What about the biggest challenges?

Atwoli: One challenge will be navigating the varied research and care landscapes in the countries involved in the project, and as a result getting things done on time. Another is the limited research infrastructure in our countries; we hope that at the end of the project this will have been addressed to a large extent.

Dan Stein (Credit: University of Cape Town)

Stein: Right now, there are the logistical challenges of initiating a study in multiple sites, each of which works within quite a different context. And given that we're trying to study several thousand people, it's a bigger scale than we typically operate at within Africa.

Teferra: This kind of research is new to our country, so we have human resource, laboratory infrastructure, and likely regulatory challenges. There is also uncertainty around the participants’ willingness to contribute samples. But we are prepared to give participants information so that they understand the nature of the project and its benefits.

Are there other large-scale projects in Africa that hold lessons for NeuroGAP-Psychosis?

Atwoli: The AMPATH Consortium, which consists of Moi University School of Medicine and several North American universities, has taught us how Kenyan and American partners can work collaboratively, and especially how to integrate a new project into existing structures and work with others to improve the general health care and research environments. It is my hope that NeuroGAP benefits from AMPATH's lessons, and perhaps even gets integrated into it.

Teferra: We have learned a lot from Human Heredity and Health in Africa (H3Africa), a large scale multi-site genetics study in Africa. It has been going on for a while, and we believe its lessons regarding ethics, governance, and other experiences derived from the project can be applied to our study. We don’t need to re-invent the wheel.

Why is now the time to launch this kind of effort?

Atwoli: It's been the right time to do this for a long time, but because of resources and the ability to bring people together we haven't been able to do it. There are lots of genetic data out there, but they're very homogenous, and there is more genetic diversity in Africa than anywhere else in the planet. If you're going to develop tests or interventions based on genetics and your sample doesn't include Africans or Asians, you're leaving out a huge proportion of the global population.

Teferra: This project is timely because of recent exciting discoveries on genetics of psychosis by global consortia, and technological advancements that have made it possible to analyze massive numbers of DNA samples in a short time. Africa should not be left behind.

If a colleague were to ask you, "Why do you want to do this, when we have other health problems to worry about," how would you respond?

Atwoli: We have many health priorities, but mental health is a priority as well. And we need to study these conditions now because a huge proportion of our home populations suffer from them, and we don't understand them well enough. And if we don't understand them we cannot help people as well as we could.

Stein: We have to be careful in explaining that NeuroGAP won't help clinicians' patients tomorrow, that it is not going to result in new treatments immediately. But we have colleagues who see how this project is creating something new, and will help patients in the long term.

Solomon Teferra (Credit: The Ethiopian Reporter)

Teferra: This project is not some fancy scientific endeavor; it has practical applications. We know that studies on the etiology of schizophrenia and novel treatment development are stalled. We know that our patients are suffering as a result of lack of effective treatments. This kind of research could make an enormous contribution to improving the lives of millions of people suffering from psychosis all over the world. And by training individual researchers and improving our research and service infrastructure, it will help us build new capacity.

Five years from now, what do you hope the outcomes of NeuroGAP-Psychosis will be?

Atwoli: We expect to start seeing important findings coming out of NeuroGAP, including epidemiological and lab findings that may contribute to better care for mental illnesses.

Stein: I hope that five years from now, we’ll have a range of new DNA to mine, that we’ll have some interesting preliminary findings from the genetics research, and that our doctoral and postdoctoral students will have made good progress.

Teferra: I sincerely hope and believe that we will have completed data collection and analysis and produced a preliminary report. We will have better-equipped research infrastructure, and our researchers will have built the capacity to conduct cutting-edge genetic studies of other diseases affecting our society.