|The issue of diversity will require a lot of work among scientists, policymakers, and ordinary citizens / Photo by Sergey Nivens via 123RF|
Genetics research must benefit everyone. However, minority groups are not represented by various researchers. Ethnic minorities, scientists warned, are set to miss out on the medical benefits from research.
There is a huge bias in studying white populations in Europe. According to Prof. David Curtis, a geneticist and psychiatrist at University College London, said that funding bodies must address the issue that genetic tests are mostly using samples from white Europeans. The results from such are insignificant when applied to other ethnic groups. If this continues, there will be a big problem if genetics expand in the next few years. Curtis said that the current situation makes UK medical look like institutionally racist. This was indicated in a letter he wrote to which John Savill, the chief executive of MRC that time, replied, “I do not think it is helpful to cast concerns over experimental design as ‘equalities issues.’”
Prof. Eske Willerslev, a geneticist at the University of Cambridge and director of the GeoGenetics center at the University of Copenhagen, is studying the genetics of indigenous groups. He said that funding agencies are not very sure about investing in sequencing samples from non-Europeans. Willerslev said that he cannot find funding for the samples to be analyzed. There is no interest from the funding agencies, he added.
Others have also expressed their observation that there is a bias toward European samples because they are the ones who will benefit first.
Curtis said that the polygenic scores, where a person's risk for a certain disease is computed, present a big problem. For example, the test can indicate if one has a high likelihood of developing schizophrenia or other diseases. Curtis found out that a commonly used genetic test to predict schizophrenia risk yields a score that is 10 times higher in people with African descent. However, this is due to the genetic markets used as a basis were from European ancestry.
“This means that in the UK today we can test a white British subject and tell them their risk of diabetes or schizophrenia, but if they are of a different ethnicity we cannot offer them the test,” said Curtis.
While these tests are not yet used, they can be very helpful. But not helpful if the basis of these is only European ancestry. It makes sense that only they can benefit.
Why the Lack of Diversity Matters
The lack of diversity in genetics research poses a problem because those who are non-Europeans carry different genes that are associated with the same disease that is being studied among Europeans. For example, there is a cancer-screening method that might not catch a market that is carried by Asians only. There is no clear record of what ethnicity is missing in the studies.
|Funding agencies are not very sure about investing in sequencing samples from non-Europeans / Photo by vchalup via 123RF|
Sarah Tishkoff, Ph.D., a human evolutionary geneticist at the University of Pennsylvania, said, “Until people start increasing the number of ethnically diverse individuals in these studies, we’re not going to find out.” She had experienced this herself when she found a gene linked to human skin color in a study that only had 1,600 African people. This gene can be used in identifying skin cancer risk in people of all ethnicities.
The white bias that is used to diagnose other people with different ethnicities can make health disparities worse.
Why White Bias Genetics Research is Happening
Everything that we know about the genes and the links to various diseases comes from genome-wide association studies or GWAS. Here, researchers sequence the genomes of participants and find associations between characteristics from the standard human genome sequence and traits.
The inequalities now lie in the GWAS and those who conducted it. The sample population in the study might have been the majority of Europeans.
First, you have to consider who is doing the research. Since most research is done in the US and Europe, then the most common populations to be studied are from those regions. Another factor that may come into play is that non-Europeans may not be interested to take part in the GWAS due to lack of trust.
A third factor is the funding source. Tishkoff said that sometimes, proposals are penalized for studies conducted on heterogeneous populations. Such study proposals are being declined by funding agencies.
How to Fix Bias in Genetics Research
The scientific community is open to having a greater diversity. NIH has an Africa-focused effort that studies genomes on the African population. The projects even order to include minorities and women.
The issue of diversity will require a lot of work among scientists, policymakers, and ordinary citizens. People who have diverse ancestries must be supported instead of discriminated. How can we expect everyone to have access to the same medical treatment if their genetic samples are excluded in the studies?
If in the future, sequencing will be part of clinical care, new treatments will not be available to the aboriginal and the gap will widen.