This workshop guide helps introduce topics and questions around precision medicine and health equity. I aimed to create a guide that would prompt participants to ask questions about the stories of research they encounter. I aimed to prompt readers to imagine alternatives they might like to see.
The web version of this guide is below, with a Google Slide deck included. A PDF and a video version of this guide will be available soon. If you use this guide, please share your story in the Discussions section below!
Let’s say a designer made a one-size-fits-all coat for an “average person.” It might fit a lot of people okay. But it definitely wouldn’t fit everyone. And it likely wouldn’t fit many people well.
Now let’s say the designer made a new coat for people in standardized categories. For example: small, medium, and large. That’s better, isn’t it? But what about people who wear clothes outside of these sizes? What about someone between a “medum'“ and a “large”? What about people with shorter arms than the “average person” of their size? These size categories are both useful and flawed. It’s useful that people can quickly get an idea whether a coat will fit them. But as we just saw, organizing people into broad categories will never work perfectly. So, what if every store could tailor these coats so they fit the wearer?
Precision medicine is an approach to health care that asks a similar question. The US National Institutes of Health (NIH) describes precision medicine in contrast to a one-size-fits-all approach. They say that current medications are developed and tested for effectiveness in a broad range of people.
With the Precision Medicine Initiative, the NIH aims to fund research that asks how health care workers can tailor health care to individuals. These questions aren’t new, but developments in research and technology are fueling new kinds of answers.
Health care professionals already base their work on medical knowledge and patient info. If they know a patient’s mom had breast cancer, they might follow research-based guidelines that suggest more frequent mammograms. As another example, a patient might talk about her troubles taking a birth control pill every day. In that case, a health care worker might suggest an IUD instead. What are other ways that health care workers base their work on what they know about a patient?
We know that health doesn’t begin or end in a doctor’s office. We can imagine the “precision medicine” approach helping us in many aspects of our lives. For example, a doctor could give you a nutritious recipe book that matches your budget and taste. Or a nurse could point you to housing options that won’t upset your allergies. What are other cases where personalized info could help someone lead a healthy lifestyle overall?
A tailor can re-stitch a coat so it fits you just right. But a health professional can’t work with medical treatments that way. These treatments go through testing and approval for very specific uses. So, instead of “tailoring” an existing medical treatment, a health care worker would help you find the best option out of many. Or they might help you find the right combination.
One goal of precision medicine is to help you find your “just right” medical treatment. A health care worker might use information about how a medicine usually interacts with genes, a work environment, everyday habits, and a medical history like yours. This means they would still choose a “just right” treatment for you based on an idea of an “average person.” It’s just that this “average person” would match you more closely in more ways.
This approach to medicine would require a lot of detailed information. It would require a lot of your own personal data. And it would require a lot of data about the treatment itself.
Clearly, “precision coat-buying” wouldn’t work for everyone. Some people who want a coat don’t want someone else to have all their measurements. Some people who need a new coat can’t afford one. Some people live in hot climates where they don’t even need coats. What are some situations where a precision medicine approach might not work for someone?
Precision medicine requires answers to lots of questions. Who takes a certain medication? How well does it work for them? Does it work better for some people than others? One goal of precision medicine is to use the answers to these kinds of questions to personalize medical treatment. So…
This means that precision medicine requires a lot of people to give researchers their personal data. This also means that for precision medicine to work for you specifically, there need to be people like you in research databases.
But what does “like you” mean? It could mean someone with similar health issues as you. It could mean someone with similar genes. It could mean someone with a similar lifestyle. It could even mean a combination of all of the above. This is why large numbers of diverse research participants is key to precision medicine. This will help researchers and health care workers learn more about how a treatment works under all sorts of real-world conditions. For example, the All of Us Research Program aims to recruit 1 million people to be part of a precision medicine research database.
Right now, there are a lot of unknowns when treating diseases. We know that some people will respond well to certain medications. And we know that some people won’t. But we don’t always know how to predict those outcomes. And as a patient, this can feel like random chance. Precision medicine aims to use more information from research to make more accurate predictions about medical treatment.
Do you think you would give your genetic information to a research study? Why or why not?
Would you give a research study your medical records? How about survey responses? Or data from an activity-tracking smartphone app? Is there a difference between these different kinds of data for you?
So far we’ve focused on precision medicine as an approach to medical treatment. However, precision medicine impacts disease prevention too. Precision medicine might help predict what kinds of people will get a disease in the first place. Again, what does “kinds of people” mean? It might mean a particular combo of genes, environment, and lifestyle. It’s hard to say right now.
But these ideas about disease prediction aren’t new. We already use genetic and hereditary information to predict disease and make health decisions. For example, you might know of certain health conditions that run in your family. And tests for mutations in genes related to cancer have been available for decades. However, there’s still a lot we can’t predict. It’s possible we just don’t know all of the risk factors for certain diseases. Or, we don’t know about specific combinations of risk factors that lead to an actual disease. One of the promises of precision medicine is to help provide more information to make better predictions.
You might be familiar with commercial genetic testing for health. Genetic testing companies can tell you if you have a certain version of a gene that’s known to lead to a specific disease. These companies can also tell you if you a have a version of a gene that lots of people with a certain disease also have. Precision medicine aims to go beyond this, incorporating genetic information, lifestyle info, medical history, etc. to better predict whether someone will get a certain disease. The idea is that more info can lead to better predictions for more people.
Ideally, precision medicine can help all people be healthier by providing better predictions about their health. They'll be able to talk with their health care providers about their risks. They’ll be able to make informed decisions about their lifestyle and their medical care. However, things probably won't be that simple for everyone.
We already know that diet and exercise are important to health. We already know that sleep and social support are important to health. Do you think precision medicine can offer useful information for you to form healthy habits? Why or why not?
“Health equity” describes an ideal situation in which everyone has the chance to be healthy. Right now, we don’t see health equity in our society. It's harder to be healthy if you can't afford to see a doctor. It's harder to be healthy if you live in an area where fruits and vegetables are hard to find. These kinds of social inequalities make it harder for some people to be healthy.
As it’s defined right now, precision medicine won’t make it easier to act on medical information. Precision medicine may help provide people with more personalized health information. But it won't change their income, their insurance status, or their neighborhood. Precision medicine might help health care workers make better decisions about people's health care. But it won't help people access medical care in the first place.
It's not just things like income or medical care that shape precision medicine’s impact on health equity. Research participation is important too. We mentioned earlier that precision medicine techniques can work well for you if there is information from other people “like you” in research databases. For that reason, diversity in research participation is pretty important. For example, if participants in clinical trials all come from similar backgrounds, then it’s hard to say that the trial results apply to broad range of people.
However, there are a lot of reasons someone might not want to be a research participant. Maybe they want as few people as possible to have access to their personal information. Maybe they have a very busy life and it’s hard to make time for a research study. Maybe the physical layout of the city makes it hard for them to get around, and they can’t reach a research lab to participate.
This creates an unfortunate situation for medically under-served communities. They need more representation in medical research. But they also face a lot of reasons to not participate. This is a problem that precision medicine researchers will have to help solve if they want to see progress.
In this early stage, it’s important to think about the broad implications of precision medicine too. What if we find out that people from specific backgrounds are more likely to get a certain kind of illness? Could that lead to a new level of discrimination? What if pharmaceutical companies find ways to target medicines to populations that live in wealthier areas? Could that lead to a new levels of inequality?
Precision medicine holds a lot of promise. But that doesn’t mean it’s guaranteed to advance health equity. Like all things, it has both risks and challenges. Hopefully this workshop has helped you feel more comfortable discussing precision medicine and asking questions about it.
Do you see any tension between development of medical technology and health equity? Do you think it’s possible to advance both at the same time?
Do you usually hear about health equity when you hear about medical research? Why do you think that is?
Thank you for taking the time to think about precision medicine! You’re now better equipped to think about the messages you hear and ask questions as you hear about precision medicine in the future.
If you want to keep learning more, here are some resources:
“What is the Difference between Precision Medicine and Personalized Medicine?” from the US National Library of Medicine.
“FACT SHEET: President Obama’s Precision Medicine Initiative,” from the Obama White House archive.
“Help Me Understand Genetics,” by the US National Library of Medicine.
“Precision Medicine in Cancer Treatment,” by the National Cancer Institute.
“What is Precision Medicine?” from Learn.Genetics, by the University of Utah.
The Allied Media Project’s “A People’s Guide to AI” was a big inspiration for this piece.
I adapted OpenMoji emojis to make the graphics for this workshop guide. The emojis are available under the Creative Commons Share Alike 4.0 (CC BY-SA 4.0).