Patient-Centered Support Boosts Genomic Testing Consent in Cancer Care

Providing patient-centered education and navigation support significantly increases consent rates for genomic testing, making testing integration feasible in cancer care and improving access to genomics-based clinical trials, according to research presented at the 2026 ASCO Gastrointestinal Cancers Symposium.

“[This research] is feasible; it is not challenging. This was not an expensive study. It just required a bit more time and effort and really working with our patients, being centered around what is important to them,” Dr. Nadine A. Jackson emphasized in an exclusive interview with CURE at the conference.

In the interview, Jackson, a senior physician at Dana-Farber Cancer Institute and associate professor of medicine at Harvard Medical School, explains findings from her research into the patient consent rates for genomic testing.

CURE: For patients who may un who may be unfamiliar with genomics-based clinical trials, what is the SURGE study? Why is improving representation in these trials so important for patient care?

Jackson: The SURGE study stands for Supporting Utility and Representation in Genomics Clinical Trial Enrollment. The reason we have this study is because a lot of patients don't know that the way we make decisions nowadays about cancer treatment is based on finding these unique features in your tumor; a lot of our trials, over 70%, are based on those unique findings.

Essentially, you will not be considered a candidate for those trials unless we know that your tumor displays a certain unique finding, which could be a mutation, a new deletion, an insertion, or extra copies of a gene.

Can you describe your research into supporting representation in genomics-based clinical trial enrollment?

This weekend, we presented interim findings from our study. Our goal was to share that about 36 patients responded [to our research] regarding their understanding of genomic testing and clinical trials, and they shared that they have a fairly good understanding of those tests. Around 70% of them said they are aware of genomic testing, and they are ready to engage in it. We know in our experience, only one in two patients, maybe, will consent to genomic testing. Given that most of our trials are dependent on this information, not having this information early in a diagnosis could be quite damaging for patients and leave some without opportunities to get options for treatment for their cancer.

We presented data showing that by educating patients using a video, which is a quite simple tool concordant with their primary language (it was provided in seven different languages) and also providing a navigator for a subset of patients, most of our patients (62%, which is much higher than before) were able to consent to genomic testing. This navigator is someone who is at their elbow, available to assist them, to answer questions about genomic testing, and also to coach them once those results are available on how to discuss those findings with their doctor and the opportunities those findings create for clinical trials.

Consequently, we are putting patients in a better position to be able to participate in clinical trials in the future because they have the results that will be needed by their doctors to make those decisions with them.

What is the difference between genomic testing and germline testing?

This is very different than germline testing. Germline testing is something you're born with, and the onus there is really on the patient to make a decision about testing. Genomic testing is what we find in the tumor after a cancer has been diagnosed, and that really is a decision your oncologist should be making with you, and not one that patients can make on their own, which is why providing the education and providing the navigation support is so critical to help patients consent to this process.

What barriers do patients commonly face when it comes to enroll enrolling in genomics-based clinical trials, and how does SURGE address these?

Before we launched the intervention for SURGE, we actually did what we call a qualitative study, which is asking patients, "What are your barriers?" We also asked the research study teams as well what they observed as barriers to patients saying yes to genomic testing and participating in clinical trials. It turned out both patients and researchers said the same things.

They found that education was a big barrier and that patients were unaware of why this was important; therefore, they were inclined not to engage in doing it, feeling that it was too stressful or was extra and maybe not essential to decisions around their care.

They also cited logistical barriers, such as their insurers not paying for testing, or not being able to get to the testing site to get it done, or requiring an extra visit to get genomic testing done. And then, the biggest challenge was that it takes time between the test and the result, and then there is extra interpretation that is required. This is not like a complete blood count, for example, where you get the lab done and then within an hour or so you have a result. Here, you may have weeks between the testing and getting the result, and so you need someone there to kind of really remind you that this information is available, which can make a difference in how you decide to pursue your treatment for your cancer or pursue a clinical trial.

How can broader and more diverse participation in these genomics-based studies lead to more equitable and effective cancer treatments for patients in the future?

Two big ways. One is that having more people engaged in these studies means that more people have access to the novel improvements that we've been discussing throughout this conference. We were just talking about RAS mutations, which are the mutations that we see in pancreatic cancers and other cancers.

There are a lot of great drugs that are available, but unfortunately, many of the patients I am seeing have not even had their tumors tested for that mutation. By the time I order the test, it may be weeks before I get a result. That means an opportunity may have passed them by. So, it is really important that we get more patients access to these opportunities based on the advancements that we're seeing with our research.

The second reason is actually going backwards, right? We don't know what we don't know unless we engage more diverse populations. It turns out that in many of our genomic studies where we are just looking at tumor mutations in a petri dish, for example, or in a lab, we don't have diverse representation of tumors, and tumors do show up differently in different people. We can learn a lot more when we have more people engaged in that work. In order for us to treat broader representative populations, we need to have broader representative participation in these studies.

What do the results of your research so far suggest about how genomic testing can be better integrated into routine cancer care, to help connect patients with appropriate trial?

So, I would say at Dana-Farber Cancer Institute and many academic research institutions, we do a lot of work and we invest a lot of time in getting genomic testing done for our patients. What we have learned through the SURGE study is that it requires extra layers of support for patients; we cannot assume that every person walking into our clinic or into our academic center knows what this is about and is ready to say yes just because we said so. Therefore, we need to support our patients in understanding why we use this information and how we use it.

I think the other piece that we have learned from this is that it can be done. It is feasible; it is not challenging. This was not an expensive study. It just required a bit more time and effort and really working with our patients, being centered around what is important to our patients. That really gave us the solutions that have been effective in doing the study.

For patients who are interested in participating in a genomics-based clinical trial, what practical steps would you recommend they take to advocate for themselves and that conversation with their care team?

So, when you first walk into your cancer center and you are meeting with your cancer doctor, in addition to asking them where your cancer started, how extensive it is, and what your treatment options are, you also want to make sure that genomic testing is a part of your diagnostic workup where we are finding out more about your tumor.

If you want your oncologist to know all that there is to know about your tumor, genomic testing has to be a part of that initial conversation. The longer you wait to get testing done, the less likely you are to have the needed information at the right time. It is akin nowadays to not knowing where your cancer started. Genomics is that important to how we make decisions about your care.

Transcript has been edited for clarity and conciseness.

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