As headline-catching new technologies emerge—like tools to “edit” our DNA—researchers, doctors, patients and the general public are excited about the future of medicine and the research that informs its practice. For some, there are obvious and critical conversations taking place about the ethics of this research, including how we do it (think “CRISPR babies” in China) and the potential for edits (intentional or otherwise) that could be passed on to future generations.
These conversations are important, but they can overshadow another equally important question. Will all patients have equal access to these new technologies?
That question requires us to look back at the blemished history of medical research and health care that has resulted in some patients—based on their race, gender, income and other factors—having poorer access to health care and poorer health in general. In some cases, this is because the system neglected them. In others, because the system blatantly abused them. The question we must ask is: Will new treatments continue or even worsen deeply rooted disparities? Or will we lay the groundwork for future treatments that benefit all people equitably?
The history of medical research and health care is critical to understand here. Black Americans, for example, have been subjected to a long list of historical exploitations, producing an understandable and widespread legacy of mistrust in the health sector. These range from the appalling use of enslaved women to create modern gynecological treatments, to the now infamous Tuskegee experiments, in which scientists observed the effects of untreated syphilis in young black men, to the story of Henrietta Lacks’ cancer samples being used without her knowledge.
Beyond these striking examples, too many patients have been shut out of the American health care system: those who have lacked insurance and the ability to access health care services, who are undocumented, who don’t speak English fluently, who are LGBTQ, who are imprisoned, or who have faced bias (both explicit and implicit) in a system developed and run by privileged white men.
While we are both men from populations who have not faced these historical injustices in this country, these questions and concerns are central to our work. One of us (Jonathan Marron) cares for children with cancer and studies how well children and parents understand cancer genomic sequencing and similar advanced technologies. My research has shown that families of nonwhite racial/ethnic background and those with less education have less understanding of the purpose of these tools—which is likely to manifest as mistrust and disinterest in these technologies as they move into the oncology clinic.
The other author (Eric Kmiec) is working within a health care system that serves a population of patients in Delaware that mirrors the diversity of our country. This work is focused on wielding the cutting-edge tool called CRISPR to try to develop treatments that can edit the “typos” in DNA that cause disease.
So how can we develop and use these tools to build a more equitable future and make them available to all, not just to the most privileged?
The first step is to make active choices to work with those who have been abused, neglected and left behind by the health care system to build trust in new science like CRISPR and gene therapies and the treatments they ultimately may yield.
This is both moral and essential to ensuring that new technologies will work for patients who aren’t just white and of European descent, the group that has historically participated in medical research. If we want to succeed in developing the promise of treatments tailored to any individual (“personalized medicine”), we need to ensure that biomedical research includes genomic data from people of all backgrounds and with the full range of genomic variation that influences when, how and if diseases occur.
To make possible a future of personalized medicine, where each patient can receive truly genomically tailored treatment, we must first understand as many genomic variations between people as possible. If we don’t do this now, new breakthroughs may not work as well for patients who aren’t white and of European descent. Such inequitable advances are not advances at all.
There are efforts to counter this unfortunate past, including projects like All of Us at the National Institutes of Health, but change will also require meaningful and ongoing engagement with communities who previously have been shut out from research.
This leads us to the second critical step to avoid deepening health inequities: To build trust and comfort seeking out new breakthrough treatments, we must make sure that those doing research and providing care look more like society at large.
One approach to diversifying the workforce and building understanding of new technologies is to connect a wide range of students with these new technologies. For example, with support from a National Science Foundation grant, the Gene Editing Institute team at ChristianaCare has partnered with high schools to introduce CRISPR into the curriculum and launched a training programs for CRISPR at Delaware Technical Community College. This “teach the teachers” approach has now reached 77 college instructors from North Carolina to Washington state.
This work aims both to diversify the workforce and enhance medical literacy and trust in the medical system—even for those from communities severely mistreated by it in the past. A more diverse scientific community builds trust between researchers and potential subjects and ensures that scientific advances are equitably available to—and accessed by—all, regardless of gender, skin color, finances, etc.
As we move forward with cutting-edge research, it is vital that we understand the historical context of current inequities and mistrust of the medical system. Only then can we begin to address past injustices, engage with those who have been mistreated or left behind, and ensure that future scientific advances are equitably available to all.
Together, we must set a goal of reducing disparities with new treatments. Without intentional choices to do so, we risk maintaining—or even potentially worsening—the status quo.