Committing to address racism and diversity problems in science and genomics
Genomics is a field of science that studies the genetic information of microbes, plants, animals, and humans. Genome BC is a non-profit research organization that leads genomic research and innovation in British Columbia and facilitates the responsible uptake of genomics. While we are a diverse team of professionals who commit themselves to equity, diversity and inclusion, we are now increasingly understanding more deeply that the science we trust and promote does not reflect diversity in all its aspects the way it should. Our field of research does also not support the diversity of those who have helped to develop it.
Human genetic research has a complicated past. While there are numerous historical examples of genetic misappropriation to support racist agendas like defining ‘superior’ races, there are no genes that are indicative or representative of specific races. Some of this history has left a lasting impression of genetic determinism, that genes reflect destiny without recognition of social and environmental factors at play. There is, however, genetic diversity within our human population which should be recognized and valued. Certain populations can have increased prevalence of some genetic variants due to natural selection for those variants. These differences in populations are important for a better understanding of human biology, as some genetic variations that contribute to the risk of developing diseases are not evenly distributed among all human populations. At present there are vast databases of genomic and clinical information, but these are not representative of all global populations. By and large these databases are heavily comprised of data from populations of European descent, especially males. This disproportionate representation means there is an enormous lack of understanding of health and disease in Black, Indigenous, People of Colour (BIPOC) populations, and that the skewed data predominantly benefits those of European descent. Current genetic/genomic solutions based on these data cater to the populations within those databases, despite conclusions drawn not representing the entire population. This in turn results in what appear to be statistically significant results that are in fact not significant when considering the entire population. To counteract this, concerted efforts need to be made to enhance the diversity of populations represented in these existing databases, as well as to improve the way in which data is collected in order to optimize the accessibility to, and impact of, these genetic databases.
Science has a history of exploiting BIPOC research subjects, and this exploitation continues. Even today, the discovery of how the SARS-CoV-2 virus enters human cells was made at the expense of Henrietta Lacks, a Black woman who had her cells stolen in 1951. The immortal ‘HeLa’ cell line has led to incredible breakthroughs in science, including this recent discovery during the COVID-19 pandemic. We cannot ignore the inherent lack of ownership and consent, along with an array of shortcomings in medical ethics that contributed to the exploitation of this young Black woman, and many other unnamed BIPOC research subjects. There are also ongoing problems in the way cultural differences are often ignored for BIPOC research subjects, consent for use of personal or genetic information is not always sought in accordance with different laws and cultures. In order to end the exploitation of BIPOC research subjects, major changes need to be made to improve the way consent is sought, ensure ownership of data, and ameliorate systemic racism.
Similarly, we cannot continue to overlook the important role that BIPOC scientists have played in shaping science and research, often without proper recognition. Researchers like the so called ‘father of epigenetics’, Ernest Everett Just, cancer researcher Jewel Plummer Cobb who discovered the cancer treatment methotrexate, and Marilyn Hughes Gaston who pioneered routine testing for Sickle Cell Disease in infants. Contributions like theirs and many others have made huge impacts on science, but their names are often unjustly forgotten. Had these BIPOC scientists and others been given the same opportunities and recognition of their white peers there is no telling what other incredible discoveries could have been made in the field of science. Without addressing underrepresentation of BIPOC in science we cannot reach our full potential, as a lack of diversity results in a loss of talent. Furthermore, by not recognizing these researchers for their contributions, future generations of scientists have been denied representation of BIPOC role models throughout their education.
Racism is a serious problem in science. Centuries of systemic structural racism have resulted in barriers to accessing equitable education, mentorship, employment, career development, recognition, and other opportunities. The peer review process for funding awards and scientific publication is one of the key principles of scientific inquiry. The peer review process aims to provide funding and publication opportunities based on scientific excellence and integrity. While the principles of peer review are sound, the way it is being conducted has major diversity issues. The lack of diversity of peer reviewers results in a loss of diversity in the scientists who are published and funded, which then continues to perpetuate a diversity deficit in the field of science. Science can and should do better, steps must be taken to ensure true diversity and representation. We are committed to making science and genomics more equitable and accessible to BIPOC scientists, students, our colleagues, and partners. We are committed to change, to learn and to grow as an organization and as individuals, and use our platform responsibly to share this journey.
While Genome BC recognizes that to end systemic racism in science requires a unified and comprehensive commitment across multiple levels, individual organizational change is the foundation. To this end, Genome BC commits to the following actions:
- Listening – together we are on a journey to not only improve science, research, and innovation, but to improve ourselves. As such we ask our followers, collaborators, and colleagues to help us grow. If you have any suggestions of how we can use our platform and voice to better support diversity and the BIPOC science community, we want to know. You can contact us using the ScienceRepresents@genomebc.ca email address to share your ideas, perspectives, or creative ways in which we can enhance our alliance with the BIPOC community of scientists, researchers and innovators.
- Educating – internally we pledge to actively seek diverse learning experiences that will allow us to grow and become better allies, as well as examining existing biases that may stand in the way of us being a truly equitable, diverse, and inclusive workplace. Externally, Genome BC commits to actively supporting STEAM outreach efforts that increase education enrichment opportunities for BIPOC communities. Through our GeneskoolTM program, we will work to better connect BIPOC scientist role models to youth in the education system and in communities across BC. We will use our platform to challenge biases that perpetuate systemic racism in science, and work to dismantle past and present notions of race which we know are not scientifically grounded.
- Diversifying – we know that diversity is not only important for fairness in representation but is also essential for enhancing creativity and inventiveness in scientific discovery. Diverse perspectives at all levels benefit everything we do and create an equitable, diverse, and inclusive environment to innovate and grow. We promise to purposefully continue to improve the diversity of our advisory boards, reviewers, panelists, and speakers and to review and revise our processes to promote diversity on an ongoing basis.
- Representing – we understand that representation matters, which is why we will use our platform to feature and amplify BIPOC scientists and their voices. Our goal has always been to use our social media platforms to grow our community, share information, learn from others and form connections. To share diverse stories, research, and perspectives, we commit to actively identifying BIPOC researchers to follow and seek recommendations. We invite our existing and future BIPOC researchers to contact us so we can amplify your work on our social media using the ScienceRepresents@genomebc.ca email address.
We stand with the BIPOC community as we work to help improve equity, diversity, and inclusion in our work. There may be a history of racism in science and genomics, but that does not mean the future needs to be the same.