Race representation matters in cancer care
Authors: None The Lancet Digital Health
Journal: The Lancet Digital Health (2021)

Cancer care disparities have been exposed and exacerbated by the COVID-19 pandemic. On the first anniversary since George Floyd's death, May 25, 2021, the third National Cancer Institute Symposium on Cancer Health Disparities brought together experts to discuss the causes of cancer health disparities and strategies to reduce these disparities, including novel approaches to prevention and precision medicine. Precision medicine technologies, such as genomics to identify biomarkers for screening and artificial intelligence (AI) models for rapid cancer diagnosis and prevention, are potential equalisers, but in the short term have they accelerated inequity in cancer care? A Commentary in Cancer Cell last month highlights that racial gaps in cancer mortality in the USA have only slightly narrowed since the human genome was first sequenced 20 years ago. Genetic screening technology has helped to reduce mortality from breast cancer in the USA, but only in White populations. Minority ethnic populations have seen increased mortality from breast cancer, and other cancers, potentially due to unequal access to screening and diagnosis. Google has recently received approval from European regulators to market an AI-powered dermatology app to suggest a diagnosis for various skin diseases, including melanoma, based on user's photos and questionnaire data. Experts have expressed enthusiasm about the tool's scalability and accessibility, but performance on darker skin tones has not been confirmed, meaning this technology could have unequal benefit across diverse European populations. The majority of dermatology training data is from people with white skin and the developers of the app have not made public all of the data used to develop the model, which raises doubts about its performance in minority ethnic populations. Furthermore, according to STAT, of 161 AI products cleared by the US FDA between 2012 and 2020, only seven reported the racial composition of their study populations. Nonetheless, those devices were cleared to use AI to help detect or diagnose an array of conditions, including cancer, heart disease, and respiratory illnesses. Without reporting how representative existing datasets are, we cannot understand if potentially lifesaving technologies for cancer screening and diagnosis are built for use by everyone. In response, the National Institutes of Health launched the All of Us initiative in 2015 with ambitious goals to collect genomic data from one million people, with a focus on recruiting minority ethnic volunteers. However, there continues to be a paucity of data from non-White populations, widening the gap between those who already benefit and those who do not. To ensure technology for cancer care is equal, greater transparency of representation within datasets is necessary to understand the extent of the representation gap. Transparency around how technologies are used and developed is also necessary to build trust with communities and health-care establishments. Acknowledgment that trust within health systems has been eroded because historical medicine has not supported minority populations is essential to identifying problems with existing care for minorities and ensuring that new technology meets these needs. A Perspective in The Lancet by Ziad Obermeyer and Eric J Topol eloquently states that for too long the performance of AI algorithms has typically been compared with doctors' performance, but what counts is patients' experience. Obermeyer and Topol emphasise existing biases within health systems must not be encoded into technology. Racial representation in health data matters and more needs to be done to achieve equal representation of minorities in clinical research. A 2019 Viewpoint in JAMA by Polite and Colleagues stated “cancer injustice is not a science problem, a technology problem, or a genetics problem. It is a policy problem.”. National health policies must prioritise representation in AI tools and genomics technologies for cancer care. Unequal health care must be everyone's responsibility to solve, not just those who are most disadvantaged. Although technology can catalyse better care for cancer patients, all stakeholders, including governmental bodies, policy makers, research funders, and health-care providers, should put health equity first to ensure better health care for everyone. Publication of cancer research in The Lancet Digital Health requires demographics of the population, including ethnicity and race, to be reported. If these data are not available, the implications of the lack of representation must be discussed, including the future work needed to ensure that benefits of the reported technology reach the widest range of people and do not exacerbate existing inequalities.