Obtaining An Accurate Family Health History is Crucial

Interviewer: Having an accurate family health history is just as important as exercise and eating right, maybe even more important. But where do you start? We'll talk about that next on The Scope.

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Interviewer: Dr. Joshua Shiffman is an expert in hereditary cancer at University of Utah Health Care. Let's talk about family history for a second. For what you do, it is absolutely crucial that you know a family history, but what about for the rest of us?

Dr. Shiffman: Obtaining an accurate family history is one of the most crucial things that you can do as a patient to help your doctor understand what your disease risk is.

Interviewer: So I made the claim that maybe this is as important as exercise and nutrition, would that be an accurate claim?

Dr. Shiffman: I think it is a very accurate claim. For instance, if we know that a patient is at genetic risk for a specific type of cancer, or cancer syndrome runs in that family, we're able to institute screening to do early tumor surveillance. Studies that we've done here at the University of Utah and with other collaborators across the country have shown that if we know you're at risk for cancer, and we screen you accurately for that, that your three-year survival is 100% if we detect the cancer early. That's opposed to 20% if you don't undergo screening.

Interviewer: So that's for cancer, but what about other medical conditions?

Dr. Shiffman: The same is true for all sorts of diseases. For instance, if you know that you have a genetic predisposition for diabetes in your family, well then you better watch what you eat, and be careful to limit some of your sugar intake. The same is true for cardiovascular disease and just about any type of disease that's out there.

Interviewer: So how many people actually have an accurate history that's complete and useful to a physician?

Dr. Shiffman: I would say very few. Very, very small, in the single digits. Many of us have some idea, and we know that Aunt Millie may have had some type of disease, but we can't remember what it was, and there was a cousin with cancer, but no one really spoke about it. So when you start to dig a little deep, we begin to realize, in the clinic, really, that we don't have that full and complete picture.

Interviewer: And you're talking about some common types of diseases, but there are a lot of things that run through families that people aren't even aware of, like mental illness for example.

Dr. Shiffman: That's very true. We know that sometimes suicide runs in families, depression certainly runs in families. Almost every disease is genetic, but just because you have the genes doesn't mean you'll get that disease. However, if you have a family history, I would argue that's even more important than the genetic risk.

Interviewer: So it sounds like an accurate family history is considering a broad range of potential diseases, not just the big ones, like so-and-so had diabetes, or so-and-so had cancer. How would you actually start to collect a family history? So when your doctor asks you that question next time, you can go, look at this, bam.

Dr. Shiffman: Right. And that is exactly what we need. We've done several different studies and we've shown that despite the growth of different tools that are available, they really don't seem to be doing the trick. It seems that people are relying too much on their own recollection.

So what we recommend, the first step of taking an accurate family history, is sit down, and call up your family members. Ask them, what was it that you had? What year was it that you had that? How was it treated? It's really important to know the distinction of what was actually diagnosed versus what you think was diagnosed.

Interviewer: So it sounds like it's a family activity, it's not just a one-person activity trying to remember, and details are important.

Dr. Shiffman: Details are crucial. You need to know what age did that person develop their disease? It's much different to have an 80 year-old with diabetes than it is to have a 12 year-old with diabetes.

Interviewer: There are a lot of things that I think would be difficult to keep track of. Is there a tool or something that can help you do this? I don't think my legal pad is going to cut it.

Dr. Shiffman: Exactly, and you're not alone, Scott, a lot of people feel the same way, as do I. So that's why we've been working through our program in personalized health and also with the Department of Pediatrics here at the University of Utah to create such a tool. We've been working on something called ItRunsInMyFamily.com, and what this tool will allow others to do is to collect an accurate family history with the help of other family members.

Scott: And how far back do I need to go?

Dr. Shiffman: Usually a three generation family history is sufficient, but you also need to know, when you report to your doctor, is it something that occurred on just one side of the family? Was it both sides of the family? Because that makes a difference too in trying to define your risk.

Interviewer: And beyond immediate family, how far out am I going?

Dr. Shiffman: So you really want, you know, your siblings, your own children, if you're older, you definitely want your parents, your aunts, your uncles, your grandparents, and your cousins.

Interviewer: Right, and get everybody's recollection and try to get it as accurate as possible. So once you get all this information together, what do I do with it now?

Dr. Shiffman: Well, you should really keep it in a safe place. So you need to write it down, or have some way of storing it so that when your physician asks for it, you have it there. If you come in prepared, and you have that family history in hand, then you can really spend the clinic visit focusing on what you need to do because of that family history.

Interviewer: And so, having a family history has been important for a long time, but it's becoming more and more so, can you explain why that is?

Dr. Shiffman: We know now that family history is really one of the most accurate predictors of disease risk for an individual. We also know now that genetics plays a role. So we're able to combine DNA information, genetics, genomics, things that we're experts here at the University of Utah and combine that with family history and of course no one needs reminding that genealogy and family history is a real key component of living in Utah.

So putting those together at this time in this genomics revolution really helps us to understand what are disease risks and most importantly how do we actually prevent disease, how do we do something with that information that we obtain.

University of Utah and our program in personalized health and our department of pediatrics with its focus on prevention is really the perfect place to focus on family history. People have known for decades that family history is important. But I think now we're at a time and a place with the resources available and the expertise available here at the University of Utah to really build a tool that is useful, not just for the people in Utah but for everyone around the world.

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