HealthPartners created myGenetics, a community health research program in partnership with Helix, because DNA can tell people about their health and may hold the key to understanding certain health risk factors. Deenya Craig, a HealthPartners patient with a family history of cancer, started having irregular mammograms in her mid-30s and knew DNA testing existed. Through myGenetics, she found out she carries the BRCA2 gene mutation that brings a greater risk of breast and ovarian cancers. She’s now a health advocate and encouraged her family to get checked.
HealthPartners created myGenetics, a community health research program in partnership with Helix, because DNA can tell people about their health and may hold the key to understanding certain health risk factors.
Deenya Craig, a HealthPartners patient with a family history of cancer, started having irregular mammograms in her mid-30s and knew DNA testing existed. Through myGenetics, she found out she carries the BRCA2 gene mutation that brings a greater risk of breast and ovarian cancers. She’s now a health advocate and encouraged her family to get checked.
Hosts: Kari Haley, MD, and Steven Jackson, MD
Guest: Deenya Craig
HealthPartners website: Off the Charts podcast
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Kari Haley:
He's a rehab doctor from Chicago.
Steven Jackson:
She's an emergency medicine doctor from the Twin Cities.
Kari Haley:
Together, we're examining the health equity emergency.
Steven Jackson:
Inviting voices for change without the cue cards.
Kari Haley:
I'm Dr. Kari Haley.
Steven Jackson:
I'm Dr. Steven Jackson.
Both, together:
And this is "Off the Charts."
Steven Jackson:
Welcome to our show. We have a special guest today. We have Deenya Craig, who happens to be a patient at HealthPartners and an enrollee in myGenetics research study. myGenetics is a DNA testing community research study that launched in partnership with Helix in May of 2022. And what we know and for those that don't know, DNA may hold the key to understanding certain health risk factors. So sometimes we want to know a little bit more about what we're at risk for and if there are some things that we can do about it. So Deenya is here to tell her story. So welcome, Deenya.
Deenya Craig:
Thank you.
Kari Haley:
Yeah. We're excited to have this conversation with you. How would you introduce yourself to myGenetics and what was kind of the thought behind of, "Hey, I kind of want to think more about this, myGenetics thing, and I'd like to maybe be a participant."
Deenya Craig:
So I was thinking about the myGenetics study for a while. I just didn't know what it was called. I had family members that had breast cancer, and I was curious if there was something in our DNA somewhere that led up to this diagnosis. I happened to be in HealthPartners one day and I saw a big sign that said, "Genetic testing," and I thought, "This is it. I'm going for it." I asked the lab about it because it was back by the lab. I asked the lab about it. They told me where to go. I went into the MyChart, signed up, and the rest is history.
Steven Jackson:
So was the process itself pretty straightforward, getting enrolled, gathering some of the basic information to help you matriculate through the process? Was that pretty straightforward?
Deenya Craig:
It was very straightforward. It was easy to find. I read through all of the disclaimers and all the information, the GINA (Genetic Information Nondiscrimination Act) act, the genetic counsel follow up that would come as a part of the study. The other intriguing factor was that it was no cost to me. So that was another huge factor for going forward with the study and knowing that I would have someone to talk over those results with afterwards.
Kari Haley:
Yeah. I think that's huge because you might get some information back, but then what do I do about that? What does that mean to me and my family? When you did get your results back, what was the process then when you were able to talk with the genetic counselors?
Deenya Craig:
So the information came through to MyChart first. So I was able to read through it and see, "OK, there's something from this." And then I called and scheduled a meeting with the genetic counselor. She was asking a lot of questions, things about family history, and I thought, I need to get my mom on. So because it was a virtual meeting, I called my mom. I brought her into it and I said, "Hey, what about this auntie and this cousin and this family member?" And she was able to shed a lot of the familial history that I didn't have all the knowledge to, which was really helpful for the genetic counselor. And then she gave guidance and recommendations. My mother got a chance to ask questions, I asked questions. So it was a very thorough process and one that was filled with a lot of information, things that my mother took down, things that I took down. So it was very much a family conversation.
Steven Jackson:
OK. Did you have any hesitation or any concern about, I guess relinquishing your DNA and giving people access to something as unique to you as really anything else?
Deenya Craig:
No, I didn't because I think if you want answers about your health and you're serious about living your best life and being able to make decisions on your terms, someone else that is smarter than you that knows how to read this information has to have access to it to be able to give you answers. They're the experts. And so I had no concerns.
Steven Jackson:
In my own family, there is hesitation and there is decreased trust in the health care system as a whole anyway. And so when we introduced services that are available out there to analyze DNA, you see the commercials on TV, my wife and I, we did that. We found out really some cool information about our own heritage and those kinds of things. There were family members that said, "Well, did you really do those tests? They're going to use your DNA to do this." And then obviously, historically, we got some issues in the world, in this country in that regard. And so what would you say to those that definitely have issues with trust, and particularly in this regard?
Deenya Craig:
I definitely understand that aspect of it. Being a Black woman coming from the things that we know about and hear about in our history with medicine, there is definitely a valid reason in the past for the mistrust. I think also, though. too, going forward, one of the things that I think about is the process wasn't something, even though I signed up for it, they weren't giving me anything, they were taking something out. And for me, the process of drawing blood or having a saliva swab was very familiar for other things. The other things that I've just had like, "Oh, we're going to check for this flu or this, this or that, that."
Steven Jackson:
Pandemics, you know.
Deenya Craig:
Yeah. Right? All of that stuff, checking your... "We're going to check your hemoglobin." That process was very familiar. And so to line that up with myGenetics study, the process for giving them the DNA was along the same thing. It looked like a blood draw or a mouth swab. So it was something that I was familiar with. They weren't coming with something that was like, "Oh, we're going to take two toes and a finger and then we'll give it back to you patched up." It wasn't like that. So because it was familiar, it was easy to go through the process.
Kari Haley:
Did you have any family members at the time that were a little bit more hesitant on your decision to do the myGenetics study, or did it seem to be more like people were interested in it and they also wanted to hear more about your results?
Deenya Craig:
So that process, I'll be honest, I'm more of a... I didn't tell anybody. I mean, I didn't say like, "Oh, hey, I saw the sign in HealthPartners and I'm going to see what they say about the genetics." It was personal to me for a lot of reasons. I think one, because I lost my grandmother to cancer. I've lost a lot of other family members to cancer. They've gone through it. I've seen it. And just for my own personal peace of mind, I thought if there is something there, I want to go out on my terms, I want treatment on my terms, and I don't want to be surprised because I have six grown children, I have six grandchildren. I don't want this to take me by surprise. And so I didn't tell anyone. It was just, "Oh, I'm going to find out about this and see what it says." And it was when the results came back that it became more of a family decision.
Steven Jackson:
Well, Deenya, I'm going to proclaim you to be a subject matter expert starting right this second. Now, with that being said, I think about things like prostate cancer screening or something more universal because it's for men and women, would be things like colonoscopies. And again, I always reference my family and others that I know who they just refuse to go into the doctor. Talk about familiar, that's familiar particularly in my culture, my family, and people like Dr. Haley who's an emergency room doctor. They happen to be their primary doctor when they go in. So when I think about myGenetics and I think about the potential to find out information that perhaps would help you prevent something that might be in line to come, what can we do? What kind of narrative or how can we switch the narrative that can work to the advantage of everybody? Because I would imagine that if you have a group of people that don't trust the health system for whatever reason, then there are going to be some disparities even in what we're talking about today. What are your thoughts?
Deenya Craig:
My thoughts are, and I've had some of these conversations with families, so this is very familiar. Pain and trauma and struggle have a way of getting your attention like nothing else. And I think that what I remind people is when you are hurting and there is no resolution, you're running to the doctor because you need to get a fix for stopping this pain, a bad toothache or whatever. At that moment, they're coming with things that need to be done in order to relieve that pain. The way I look at the myGenetics process, you've had your blood drawn before for something, you've had your mouth swabbed before for something. This process is going to give you information. It's going to help you to navigate something you may not even know. I'll say this, health care is very private to a lot of people, and I've had the unfortunate pleasure I think of being present with a lot of family members and close friends at their last breaths and shortly thereafter.
And one thing that has been a consistent norm is that people are always surprised, the family that's left behind are always surprised by the medical information that they did not know. And they're stuck with the agony of, if I had known, could I have helped them through this? Was there a treatment? Was there a medicine? I think that's the biggest part that people forget about their health care, that while it is yet your own, again, you don't live to yourself. And when you're gone, you're gone. And the people that are left behind that care and love you are stuck with all the secrets that you've kept and all the things that you did or did not do with your health.
Steven Jackson:
Wow.
Deenya Craig:
And so you have the ability to pass that on so that other people that love you and that care for you that are wondering aren't left holding the bag.
Kari Haley:
Wow. That's really powerful.
Steven Jackson:
That's powerful.
Kari Haley:
I mean, I think that what you're saying really resonates with any condition, honestly. And the myGenetics helps a lot with familial things, but I think we can extrapolate it a little bit too, to going to the doctor and getting that primary doctor to get PCP information, get those blood draws to say screenings for kidney failure or screenings for diabetes, and just being able to share that information with their family and feeling comfortable doing that. Because like you said, as an ER doctor, I can tell you how I can count on not even all my fingers and toes more people be like, "I never knew about that." If we're at end of life cares and you're like, "Yeah, they have this condition." And family will come in and they'll be like, "We never knew."
It's a really difficult transition time then for our families too and people in health care. When that dichotomy is so wide of what people know and what the patient themselves knows, and then how do we make decisions going forward. So doing what you're doing and what you've done with your family, I think is a great message for people to hear. This is something that we can do and start that conversation early rather than at the end.
Deenya Craig:
Yeah. I'll add this too, that people think that by not knowing or not telling they're helping their loved ones because they don't want them to worry when in fact you're gone and they're left with the counseling and the grieving and the wondering and the blame. It's amazing to me to sit with family after a loss and hear them feel like they're responsible for not doing something more.
Steven Jackson:
Yeah. I'm just hearing a lot of opportunities for things to be prevented. And I'm hearing that what fills in those gaps are education and a willingness to know what maybe you don't want to know. People, they don't go to the doctor not only because of trust, which obviously is a huge concept here, definitely on this podcast, but sometimes people don't want to go because of fear. Fear of they might find out that that pain they've had for 10 years is something that might take them out. So it's like, "Well, I'd just rather not know." But again, I really love what you said about we're not here to live for ourselves because when we go, we go and the families are left A, with the grief, but they're also left with minimal information, and now they're not equipped to maybe prevent something that's preventable. That's pretty powerful.
Deenya Craig:
I'll say this too, when we went through this process and found out, OK, so you're BRCA2 positive. OK, so what does that mean? Sitting down, talking with, at my age, what are the choices? What does that mean? It was different for me. My daughter, my oldest daughter was very grateful because even with my father, I know my father, I talked to him, but that side of the family is also very closed off about their health. There's things that I don't know. So DNA isn't something that I can look at myself in the mirror and say, "Oh, it looks like you have this." No, that DNA has to be tested. You have to be able to have that interpreted for you to know where your risks are.
And when it came back, it was not even a decision I think that it was made collectively as a family, but from my husband to all my kids, to my mom. It was, "Oh, you're having a mastectomy." I wasn't interested in any other option. It was, "Nope, we're having the breast surgery, we're having it removed." And the decision was kind of made also at that time, this is a preventative effort. I'm not interested in rebuilding, so to speak. It's different for everyone. It's a very personal decision, but that was the decision that everyone from my two boys to my four girls, to my mom, to my husband, everyone, it then became a family decision And I was OK with it because it was where I wanted to go as well.
And so I think too, we think about passing down money, property, cars, all these different things. All of those things are material. My thing is I want to pass down the gift of life with choice. Whatever you end up with as my child, you have it. You can't take it out. It's your DNA. Now, how you choose to live with that DNA, that part is up to you. Since all of this has happened, I had my breast surgery in August. My daughter found out in September. She's BRCA2 positive. And so now because she's childbearing age, she has one son, they are making decisions that are different from the decisions that I made. I encouraged her go meet with the genetic counselor because she thought, "Oh, I've heard it all with you." And I said, "Well, no, you have different DNA. Your dad is not my dad. So you need to go and just see what they say." And she's glad that she did because now she and her husband, they're making different life choices based on that information.
Kari Haley:
Wow. Do you feel like in general, you taking this step with myGenetics, do you feel like it has opened up conversations in your family surrounding health and what that means for the future? Like you said, you have grandkids. What does that mean for them?
Deenya Craig:
It means a lot. It has definitely, I think this has opened the door for us being a little bit more closer about just what are we dealing with in our health. Are there things in our health? I've always been try to make it a habit and have been very open with all of my kids about my health, if I was dealing with something so that they were aware. I never wanted them to find out by surprise. I didn't want that to ever be that conversation because I've seen it on the other side with people and how wounded the family members are. I didn't want my kids to have to ever go through that. And so I've always been very open with them about my health, my life, my choices, my medicines.
That's different for everybody. But again, I think that the more they know, the less that they are shocked and concerned about what I'm actually dealing with, if anything. I think that that has definitely opened the door for us to have more candid conversations. My other daughters have been coming more about their health issues and different things that they're dealing with, and I've been encouraging them to see different doctors. And so I think that it's important. I can't even put words to the importance, the level of importance that I think that it is for people to have this knowledge.
Steven Jackson:
Have you seen any impact on other family outside of your kids and your husband, maybe relatives or even friends after what you've gone through and what you found out about your own health? Have you seen that impact others?
Deenya Craig:
I have. I put a story on my personal Facebook that I put it all out there. I said, "Hey, I'm having breast surgery. I'm going through this. I'm BRCA2 positive." I think I highlighted the story that HealthPartners had on it on Facebook, and I had people message me and inbox me. If they have my number, they text like, "Well, what's going on?" And it was a chance for me to give them a little mini testimonial about, "Go get this done. It's important to find out." And so in that, people said, "Oh, you know, I was kind of curious about that, but I didn't know." And I said, "It's absolutely worth it." And at that time, I didn't have my daughter's results.
And so she's been very vocal too at her job about, this potentially has saved my life because I had it and I didn't know that I had it. And if my mom would've never tested and said, "This is what I'm dealing with." Or, "You should go and do it." I would have never been... She said, "I'm just too busy. I have a 2-year-old or almost 2-year-old that I'm raising." And again, and she knows the family members that have dealt with breast cancer and other cancers, and like the family member whose funeral is tomorrow that passed from pancreatic cancer, another BRCA2 correlation.
Kari Haley:
Yeah, I think that you can hear a lot about those stories in the family or be aware of some aunt or uncle or cousin who died from maybe some sort of cancer, and you're just not quite sure what happened. But until you see those results in front of you, it's really hard to really personalize it for yourself because it's always like, "Oh, well." You hear, "Oh, they smoked." Or, "Oh, they had a bad diet." Or, "They maybe were exposed to something in their job," but then really tying it together with those results. It's a really big deal. And I think you mentioned this earlier, and I just really appreciated the comment that I feel like all this knowledge really does give you so much more power in making your own decisions and being in charge of yourself, in your health care decisions.
Deenya Craig:
Right. However you want to live life, I mean, I haven't met anyone that said, "I want to live in pain and agony and I want to go through sickness." But not everyone dies. That's the point of early intervention and education is you're catching it before it starts. You're catching it. I feel like because it's been, and I kid you not, probably a 20-year-long prayer of anything in the world can happen to me, God, but don't let it be cancer because I have seen the nastiness that it takes people through. And so for me, it's almost like it feels like literally a second chance at 51 to move forward in life and say, "Hey, whatever's going to happen in my life, chances are it's probably not going to be breast cancer. I mean, I could lose a toe or something, but it won't be this."
And granted those numbers, it's not 100%, but my odds from being 75%, 80% down to 5 (percent), I'll take it, especially given my family history. Now, if for some reason I end up with something, the thing is I know now, I know what to look for, I know who to go to, I know what doctors to call, and I know what the treatment options are that are available before it even starts. So for me, it's also quality of life.
Steven Jackson:
I may have already asked you to do this, but I want you to speak to that individual or that family that's still not convinced that this is something that they need to do or even consider because of their own personal lived experience or the culture of their household. Speak to some people today that are still on the fence or maybe even not on the fence. They're like, " Eh, that's not for me. I don't need to do that."
Deenya Craig:
Yeah. I think if I could speak to you that are unsure or unwilling or you don't think there'll be any value in it, I have a saying, and it's not mine exactly, but you don't know what you don't know, and you can't fight a disease or an enemy that you can't see or have knowledge on. And so if you are on the fence about it, I think the first takeaway is not even how much do you love yourself, but how much do you love the people that are connected to you? For me, if you really say you love your kids and you want the best for them, then you don't want them to suffer, you don't want them to go without... Even if you're OK with your disease or your genetics or your sickness, what about your children? Because they deserve to know. Your family deserves to know.
And if there's something out there that can help you figure out in advance that you might be dealing with something that you can get a jumpstart on, you're buying your time. Even if you decide to do nothing, you're buying your time and you're able to plan out your time. So I think it's important to know, it's important to get that information.
Steven Jackson:
It's hitting me, particularly the part about if you care about your kids or your other family members that are connected to you, you would consider this. Because again, in my opinion, it's not just about us. And I'm hoping that people listening to this episode will come to that conclusion that, "Hey, I might not just be living for myself, and there are others that love me and want me around."
Deenya Craig:
Right. One thing my daughter said to me is she said, "I've had the benefit of growing up my entire life with my grandmother, and it's been amazing." And my mother is still alive. And she said, "My son deserves to know and grow up with his grandmother and have all the benefits that I had from having a grandparent because they're just so special." And that really touched me in my heart because I want to be around for my... I can count on probably more fingers and toes that I have of all my parental mistakes. Grandkids are the opportunity to just love hard and just give them everything that you thought you wanted to or messed up on with your kids.
I want to be around for my grandkids and I want to see them grow up and I want to see them graduate and step into adulthood. I don't want to be ridden by a sickness that I had that from birth that was in my DNA that I could have maybe changed or had options to change something in my care that gives me more quality time with them. I would do this test a thousand times again if that meant that it would give me even one additional year with my grandkids. It is all worth it. It is all worth it.
Kari Haley:
That says it all. Honestly, I don't have much more to say after that because I think that it really hits home for anyone who has... Even if you don't have kids, you don't have grandkids, but you have family, you have friends, you have people who care about you, and just knowing that doing something for your health, like doing myGenetics, or even just going to your primary doctor and getting your blood pressure checked. There are things that you can do to help prevent bad things down the line that other people are going to end up being the ones who are suffering from.
Steven Jackson:
If you're hearing my voice, go to the doctor, get the basics done, blood pressure, cholesterol, et cetera, so on and so forth. Go to the doctor you might be preventing who knows what.
Deenya, we want to say thank you. Thank you for sharing your story. Thank you for being vulnerable and educating us as well as our listeners about myGenetics. We really appreciate your time today.
Deenya Craig:
Thank you. It was an honor and a pleasure.
Steven Jackson:
And if you are interested in learning more about the myGenetics study here at HealthPartners, please log on to healthpartners.com/mygenetics. Thank you, guys.
"Off the Charts" is a production of HealthPartners and Park Nicollet.
Kari Haley:
It is recorded by Jimmy Bellamy, with creative by Peggy Arnson, Tina Long, Tim Myers and Jeff Jondahl.
Steven Jackson:
Production services provided by Matriarch Digital Media.
Kari Haley:
Our theme music is by Ryan Ike.