DIVERSITY, EQUALITY & INCLUSION
Global demographic population changes The world is witnessing significant demographic shifts, including a projected decline in populations identifying as white in regions traditionally dominated by white majorities, such as Europe and North America. Factors such as declining birth rates, ageing populations, migration and cultural diversity contribute to this change.
1. Ageing population: Many regions are experiencing a shift towards an ageing population due to increased life expectancy and declining birth rates, leading to an increase in age-related conditions and chronic diseases.
2. Migration and cultural diversity: Global migration patterns have increased cultural diversity, affecting healthcare delivery due to the unique health beliefs, practices and needs of different cultures.
3. Racial and ethnic group impact: Different racial and ethnic groups may respond differently to treatments due to genetic variations. Ensuring diverse trial participation is crucial to understanding the effects of drugs across populations. Approximately 20% of drugs have varying effects, depending on a patient’s race. As the FDA puts it, we must “ensure drugs work and are safe for all those who may use them”. To do that, we need diverse trials. Genetic variations across racial and ethnic groups can have an impact on drug metabolism and efficacy.
Intersecting challenges and opportunities Addressing the intersections of rare diseases, health disparities, clinical trial research and global demographic changes requires a comprehensive approach.
1. Enhanced awareness and education: Improving awareness about rare diseases is critical to reducing misdiagnoses and delays in treatment. Investigating and developing treatments for these conditions can significantly improve the quality of life for those affected individuals.
“Clinical trials play a fundamental role in medical research”
2. Inclusive research practices: Encouraging inclusive research practices that consider genetic and demographic diversity is essential, including designing trials that accommodate rare disease heterogeneity. Governments and organisations need to formulate inclusive policies that acknowledge and respect the diversity of their populations, ensuring equal opportunities for all individuals, regardless of their ethnicity or race.
3. Global collaboration and data sharing: Facilitating international collaboration and data sharing accelerates rare disease research, aiding in understanding and developing targeted therapies. Addressing disparities in genetic studies is crucial to ensure equitable healthcare outcomes. Using the current data from 80% of the participants in genome-wide association studies coming from European descent means some genetic disorders, such as sickle cell anemia, thalassemia and hATTR amyloidosis are more likely to occur among people who trace their ancestry to a particular geographic area. This has devastating implications for diverse populations and the rare diseases that disproportionately affect them. Genome sequencing and analysis can provide critical insights into the genetic basis of these conditions, aiding in the development of targeted therapies.
In conclusion, the intersections of rare diseases, health disparities, clinical trial research and global demographic population change present complex challenges in healthcare. A collaborative approach is needed to address these challenges, reduce health disparities, and ensure equitable access to timely and appropriate care for individuals affected by rare diseases around the world.
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