The Ethics of CRISPR-based Therapy for Sickle Cell Disease

What is most profound about the domain of gene editing is the opportunity to design bespoke CRISPR-Cas Systems that help humanity overcome vexing genetic diseases and disorders that have inflicted suffering and distress throughout history. There are many powerful applications of CRISPR, however at this moment, somatic editing provides an opportunity to inspire a more equitable healthcare system.

We are living within a unique moment in history. We have seen a global pandemic illuminate the magnitude of social inequity in the United States. This past year has highlighted the systemic bias in law enforcement, but what has received less attention is the broad racial inequity in healthcare1.

This bias can be observed in the way minorities receive care that is often delivered by a clinician who is not the same ethnicity as them2, who does not take their medical needs seriously, and whose medical treatment is often not informed by clinical trials performed within their ethnic population3. The dramatic discrepancy in African American healthcare and SDOH can be seen in the infant mortality rates that are 2.3 times greater than whites4 and within hypertension, where African Americans outnumber whites by 50% or greater5.

These societal and ethical considerations must form the basis for any application of CRISPR technology. Based on the vast inequity in healthcare, I propose that greater investment should be made to research possible cures of Sickle Cell Disease (SCD), a monogenic disorder that occurs in about 1 of every 356 African American births6. Approximately 1 in 13 African American babies are born with a sickle cell trait. The goal should be to ensure that this disease is cured by CRISPR and that treatment is scalable to communities in need.

There is great promise of curing SCD with CRISPR’s in a way that is ethical, honorable, and compassionate. Somatic editing happens outside of the body (ex vivo) and cells are tested before transplantation. This process provides safety and assurance that off-target effects will not be introduced to a patient. In the future, universal hiPSCs will help drive accessibility of somatic cell editing procedures.

The world has seen the power of mRNA vaccines to fight a global pandemic. Work must be done to make this revolutionary technology accessible to all communities and future procedures should be made affordable for those on Medicare and Medicaid.

The next step in this biomedical revolution is placing CRISPR at the forefront of health equity.

SOURCES

1. Heidi Ledford, October 24 2019 Millions of black people affected by racial bias in health-care algorithms

2. David R. Williams and Fitzhugh Mullan, January 16, 2017 Why we need more black doctors

3. Khiara M. Bridges, American Bar Association Racial Disparities in Healthcare

4. HHS Infant Mortality and African Americans

5. Sofia Carratala and Connor Maxwell, May 7, 2020 Health Disparities by Race and Ethnicity

6. CDC: Data & Statistics on Sickle Cell Disease