Of the ten clinical genetics laboratories in the United States that share the most data with the research community, seven use “white” as a multiple choice category for patient racial or ethnic identity, although the term has no scientific basis. Since 2010, nearly 5,000 biomedical papers have used “Caucasians” to describe the European population. This shows that too many scientists use this term either dismissively or not knowing that it stems from the racist taxonomy used to justify slavery — or worse, the pseudoscience that adds to the biological superiority of whites Advocate.
I work at the intersection of statistics, evolutionary genomics, and bioethics. Since 2017, I have co-led a diversified, multidisciplinary working group funded by the National Institutes of Health to study diversity measures in clinical genetics and genomics (go.nature.com/3su2t8n).
Many people who work in genomics do have a subtle understanding of the problem and hope to get things done. Nevertheless, the scholars and clinicians I met often avoided examinations and even admitted to how racism distorted science, which made me feel frustrated. Decades of analysis have shown that “ethnic groups” are determined by society rather than genes. Only the privileged class would think that this is not a problem. As a white woman, I also have blind spots that need to be checked constantly.
Groundbreaking work in the social sciences, such as Dorothy Roberts Fatal invention (2012), by Kim Tallbear Native American DNA (2013) and DNA social life (2016) by Alondra Nelson, eloquently pointed out many flawed hypotheses and methods that plague human genomics.
A common theme of the scholarship is that the group depends more on the mainstream culture than on the ancestry. In Singapore, the government stipulates that individuals must be clearly identified as Chinese, Malay, Indian or others, which will affect their living and studying places. In the United States, people with ancestry from India and China, the two most populous countries in the world, and all other countries on the African continent are classified into a single ethnic category called “Asian.” Likewise, the term “Hispanic” erases a lot of cultural and ancestral identities, especially among Native American peoples.
Misconceptions about genetic “race” exist in broad and ambiguous groups of “continental ancestry”, such as “blacks, Africans” or “African Americans,” which are used in the U.S. Census and used in biomedical research Is everywhere. These destroy the incredible diversity and erase the cultural and ancestral identity.Research participants deemed inappropriate for these rough ranges are usually excluded from the analysis, despite the fact that fewer and fewer people Identify with a single group of origin.
A practical way is to stop letting people use checkboxes to identify themselves. I am not calling for the end of research on genetic ancestry or sociocultural categories (such as self-identified race and ethnicity). These are very useful for tracking and researching justice, health care, education and other aspects of fairness.The goal is to stop conflating the two, which has led scientists and clinicians to attribute health differences to innate biology rather than Poverty and social inequality.
We need to recognize that systemic racism, not heredity, is dominant in causing health disparities. This should not be emphasized by the unfair destruction of the pandemic. In addition, every researcher and doctor should be aware of the racial bias in medical practice: some pulse oximeters provide more accurate readings for light-skinned people than dark-skinned people; black Americans are not treated for pain ; Historical bias in the data used to train algorithms to make medical decisions may lead to worse outcomes for disadvantaged groups. Therefore, the American Medical Association is revising the racial and ethnic subsections. Style manual, And why medical schools are studying how their courses can reinforce harmful misunderstandings about race.
Fortunately, more and more researchers are collecting self-reported data on geographic family origin, family language, and cultural affiliation. I would like to see data collection forms with open-ended questions, rather than forms that force a fixed choice or simplify the identity to a box marked “other”. These self-reported indicators can be combined with genetic data to improve current methods of mapping population diversity dimensions.
Genetic ancestry methods based on known reference populations are not sufficient, partly because of the lack of too much global diversity in our data. I am working with the Human Pan-Genome Reference Consortium, which aims to generate more accurate and inclusive resources for global genome diversity. It will include communities, especially indigenous peoples, to participate in the development of protocols for data collection, storage and use. This respects the sovereignty of indigenous data and makes research more accurate and inclusive.
The more accurately we measure the genetic and non-genetic factors of health and disease, the less researchers will rely on biologically meaningless names that can reinforce false assumptions and cause harm. For example, the use of sequence data in clinical care can facilitate drug dosage recommendations based on genotype rather than race.
Simply choosing another word to replace “white” is not enough to eradicate racism in research and medicine. But everyone should be aware of the harm the word represents.
This article is reproduced with authorization and has been First published August 24, 2021.