In the age of advanced medical treatments, achieving health equity—in which every individual has the chance to attain their highest level of health regardless of background—is a fundamental yet unmet goal. Despite good intentions, healthcare systems globally face significant challenges in providing equal access and quality of care to all communities.
For instance, disparities are stark in emergency care wait times between genders and races, and in maternal and infant health outcomes across racial lines. Black individuals face higher instances of infant mortality and low birth weight, not due to natural causes but due to unequal levels of care. Additionally, the field of precision medicine reflects similar biases, with over 80% of genome data derived from individuals of European descent, leading to a research focus that overlooks diseases prevalent in diverse populations.
Tackling these barriers is essential not only for fairness but also for enhancing public health and ensuring health equity as everyone's right. This post explores the disparities in precision medicine, evolving roles of healthcare professionals, and initiatives aimed at promoting equality in healthcare delivery.
Characterising disparities in precision medicine access and implementation
Despite its potential to revolutionise treatment paradigms and improve patient outcomes, significant disparities exist in access to precision medicine technologies, particularly among underserved and minority populations. These disparities exacerbate existing inequalities in healthcare and highlight the need for targeted efforts to ensure equitable access to these cutting-edge treatments.
One of the primary disparities in precision medicine relates to the accessibility of genomic testing and personalised therapies. For instance, a study examining several genetic disorders with first-tier guidelines including Familial Hypercholesterolemia (FH), Lynch syndrome, and hereditary breast and ovarian cancer revealed that while guideline implementation is lacking across the entire population, it is notably low among racial and ethnic minority groups, women, residents of rural communities, the uninsured or underinsured, and those with lower education and income. A few examples illustrate the problem:
- Non-Hispanic black women have lower rates of BRCA testing compared to their non-Hispanic white counterparts, which is attributed to reduced discussions about testing with healthcare providers and limited referrals to genetic counsellors among physicians serving minority populations. Consequently, Black women have lower rates of risk-reducing mastectomy and salpingo-oophorectomy.
- Among those with FH, individuals in racial and ethnic minority groups, those with lower incomes, and women are less likely to start treatment with PCSK9 inhibitors and more likely to be denied insurance coverage for these treatments.
The high cost of genomic testing and limited insurance coverage often put these services out of reach for many, especially those from lower socioeconomic status. And because diverse populations are underrepresented in genomic databases, the benefits of genomic testing may not be as applicable or available to these groups, perpetuating a cycle of inequity.
Another significant barrier is the digital divide, which affects access to precision medicine technologies. Precision medicine often relies on digital health tools and electronic health records to gather patient data, monitor health outcomes, and make informed treatment decisions. However, those with limited access to technology and broadband internet may find it challenging to benefit from these digital health resources. This digital divide not only limits the reach of precision medicine but also restricts the ability of healthcare providers to deliver personalised care to all segments of the population.
Moreover, there's a lack of awareness and education about precision medicine among both patients and healthcare providers in underserved communities. Without adequate knowledge of the benefits and availability of precision medicine approaches, patients may not seek out or be offered these options. Similarly, healthcare providers serving these communities might not be fully informed about the latest developments in precision medicine or how to access these technologies for their patients, further widening the gap in care.
To address these disparities, it's essential to invest in initiatives that increase the affordability and accessibility of genomic testing, enhance the representation of minority populations in genomic research, bridge the digital divide, and improve education about precision medicine for both patients and providers. Only by tackling these challenges head-on can we hope to realise the full potential of precision medicine for all individuals, regardless of their background or where they live.
Key stakeholders in addressing precision medicine disparities
Addressing disparities in access to precision medicine and related technology demands concerted efforts from healthcare providers, policymakers, and the pharma/biotech industry, each playing a distinct yet interconnected role in paving the way for equitable healthcare access and treatment.
Healthcare providers: Central to mitigating precision medicine disparities, healthcare providers must navigate the challenges of high costs for patients and the integration of genomic medicine into practice. Revamping health insurance benefits and enhancing medical education to include genomics and precision medicine are critical steps towards enabling a personalised treatment approach.
Policymakers: Key to crafting an equitable precision medicine landscape, policymakers can address systemic barriers by reforming reimbursement policies for genetic testing and ensuring genetic services reach underserved communities. Strategic policy adjustments can significantly ease access to precision medicine.
Pharma/biotech: This sector has a pivotal role in acknowledging and combating structural racism and other biases within medicine. By diversifying clinical trials and research projects, and fostering diverse leadership, the industry can help bridge the equity gap in precision medicine.
Strategies for equity
To pave the way for a more inclusive and equitable future in precision medicine, several foundational strategies should be used: constructing comprehensive genomic databases that reflect our diverse global population, breaking down access barriers through collaborative projects, spearheading awareness campaigns tailored to specific communities, and integrating cultural competency into healthcare training. These essential approaches collectively advance the goal of making precision medicine accessible and beneficial for all.
Building diverse genomic databases: A foundational step towards equity in precision medicine is the creation of inclusive genomic databases. Projects like the Silent Genomes Project exemplify efforts to include First Nations, Inuit, and Métis populations in genomic research, addressing the critical gap in paediatric cancer genetics.
Expanding access through collaboratives: Initiatives such as the PRecision Oncology For Young PeopLE (PROFYLE) spearheaded by the Terry Fox Research Institute demonstrate how targeted efforts can dismantle access barriers, offering nationwide molecular tumour profiling to children and youth regardless of location.
Launching targeted awareness campaigns: Efforts like the United Against Prostate Cancer campaign, led by the NHS East Genomic Medicine Service Alliance, illustrate the power of focused awareness initiatives. By collaborating with community organisations, this project specifically addresses the heightened prostate cancer risk among Black men, enhancing disease awareness and prevention.
Implementing cultural competency training: Cultural competency training for healthcare professionals is key to improving patient education and engagement across diverse communities, thereby reducing health disparities.
Conclusion
Highlighting disparities in access to personalised care—from the scarcity of genomic data representing diverse populations to the digital divide that hampers patient engagement with advanced medical tools—underscores the critical need for concerted action. Bridging this gap requires the collaborative efforts of healthcare providers, policymakers, and the pharma/biotech industry to make genomic testing, personalised therapies, and digital health resources universally accessible.
Such a focused approach not only addresses the immediate barriers to precision medicine but also lays the foundation for a healthcare paradigm that equitably benefits every individual, ensuring that the advancements in medical technology truly serve the diverse needs of our global community.
To learn more about the importance of diversity, equity, and inclusion in precision medicine research, download our whitepaper below.
