Coined in 1959, the term ‘pharmacogenetics’ describes how an individual’s genes can be used to predict the efficacy and consequences of particular drugs on the body. Pharmacogenetics is an advanced way to enhance drug efficacy, and introducing genetics to the field of pharmacology and healthcare has proved to be an incredible asset in terms of understanding patient response to certain drugs.
But pharmacogenetics has a major issue: who it represents. Data from marginalized communities, particularly Indigenous communities, were omitted from the groundbreaking findings in the field of pharmacogenomic studies. The absence of such data means that physical reactions to drugs remain understudied for Indigenous communities in particular.
One important aspect of progress in pharmacogenetics lies in understanding and collecting data from people of different ancestries and cultures. How pharmaceutical products affect any given person will be influenced by both environmental and genetic factors. A large portion of human DNA is similar in everyone, but there is a small portion of genetic variation in everyone which varies across communities and populations. These differences may look small, but they play a fundamental role in the effect of drugs on the system and thus need to be taken into account.
A 2018 paper regarding P450 genes, which are responsible for metabolizing antidepressants, in Indigenous populations in North America provides a pertinent example of the lack of diversity in data and how that harms marginalized communities. The paper noted that, due to limited data on Indigenous populations with respect to P450 genetic variations, drugs developed based on the data could lead to increased side effects and even toxicity for Indigenous peoples. Antidepressants thus have lower effectiveness in Indigenous communities than in other communities.
The explanation for the utter disparity in datasets is the lack of available information about Indigenous communities — but there is rarely much elaboration within research literature as to why that inadequacy exists. The reason for many of these database deficiencies is past researchers’ wrongdoings, including a failure to maintain ethical, inclusive, and transparent communication with Indigenous communities and a disregard for Indigenous histories and traditions.
One high-profile example of this failure comes from the 1980s, in a conflict between Arizona State University genetics researchers and the Havasupai Tribe in Arizona, USA. What was supposed to be a study on diabetes in tribal communities turned into an unauthorized collection of data for detecting schizophrenia, migration, and inbreeding, topics and practices that are taboo for the Havasupai people. The Havasupai people never consented to the collection and analysis of such data. According to the 2019 Annual Review of Genomics and Human Genetics, “[while] the researchers initially took steps to build trust and engage the community, these steps did not neutralize the unethical steps that led to an egregious breach of community trust and a subsequent lawsuit.”
This was not the only time such a breach of researcher-participant trust occurred. On multiple occasions, researchers have either collected data without consent, or reused and analysed old data in studies that participants did not consent to. Indigenous peoples have also been regularly misled and deceived in research processes, with their data being used for entirely different purposes than agreed upon.
The 2019 Annual Review of Genomics and Human Genetics notes that Indigenous communities “have been the subject of western science and research for centuries,” often without consent from the communities in question. According to the review, non-Indigenous Western scientists’ unethical behaviour and disrespect of cultural and spiritual beliefs signify “a failure to address the interests and priorities of particular Indigenous communities and their membership,” which has created “an environment of mistrust between researchers and Indigenous communities.”
To reverse the years of the scientific community’s wrongdoings, researchers will need to work to rebuild trust and cooperation with Indigenous communities. This starts with simply acknowledging Indigenous peoples’ rights and the obligation to respect them and their beliefs. Improving communication and attaining clear consent during research processes also works to protect these rights, allowing researchers to continue studying and creating pharmaceuticals for diverse populations without exploiting or deceiving them.
In an attempt to earn back the trust of Indigenous communities, there are new systems and projects in place — such as the National Center for Indigenous Genomics in Australia — which work to facilitate consensual and ethical participation in genetic research. These can give a vision of a brighter future bridging the gap between Indigenous communities and healthcare systems, along with significant advancement in diversity in pharmacogenetic research and development. Additionally, the All of Us research program in the United States seeks to advance health data integration by collecting genetic information and medical and lifestyle histories from a million individuals from diverse backgrounds.
By making substantial efforts, non-Indigenous researchers can hope to improve relationships with Indigenous communities, and ultimately give way to a more inclusive and supportive medical ecosystem for everybody.