AGHI Participant Stories

PARTICIPANT STORY #1


Family Motivation

Meet Deborah Grimes, chief diversity officer for UAB Health System. She has accomplished many things throughout her career, including being a nurse, a lawyer, chief compliance officer at UAB, and most recently becoming one of the first to receive a Master of Science in Healthcare Quality and Safety from the UAB School of Health Professions. She also is a breast cancer survivor and an Alabama Genomic Health Initiative participant. Why did she choose to participate in the AGHI? Below, Grimes answers some questions about her inspiring genomic story, how she beat breast cancer, and why knowledge is power for her and her family.

How did you first hear about the Alabama Genomic Health Initiative?

At UAB, I walk back and forth all day for meetings, and I saw the sign and read the information at The Kirklin Clinic of UAB Hospital. It wasn't a matter of if – it was a matter of when. Being able to identify something from a genetic perspective that I may be able to share with my primary care physician was intriguing to me, and I felt like it was the right thing to do, especially with my history of breast cancer. I may have other genetic health concerns that I may not know about.

How would you describe the AGHI to friends and family?

Knowing your own history is important, but it is also important to know our genetic makeup. It is a way to be proactive. It is a way to take charge of your own health, lifestyle, and background. Information is powerful. So, I would rather know more and do less than to not know and just to allow things to occur without trying to have some control.

Would you describe your experience as an AGHI participant?

It was a very easy process that gave me very meaningful information. I felt really good about the process, which took about 45 minutes. I gave my consent and completed the questionnaire, including my health and family history. I opted to share my results with my primary care physician and share my data with the biobank for future research.

How important is it that AGHI participants be diverse and represent our state?

It is extremely important. We have to understand what variables impact preventive health. If we just look at one group, we would be missing a huge array of the patient populations we need to be looking at. Diversity improves outcomes. It’s important for the entire population to participate in the AGHI because it will have a greater impact.

What do you hope will be done with your contribution to the AHGI?

I hope my data will be used to advance precision medicine. I hope my provider will receive information that may help guide my preventive health maintenance process.

 

PARTICIPANT STORY # 2


Family Mystery

Alan Brezin knows why the expression "have a lot of heart" is often used to describe athletes. "When you feel strong, you feel like you can beat the world, and when you don't, you feel pretty diminished," he says. Brezin understands because he has experienced health challenges since a young age due to hypertrophic cardiomyopathy, a genetic heart condition that his mother, grandfather, and two older brothers also had. Read more about how his health journey led him to participate in the Alabama Genomic Health Initiative.

As a young man, did you know you had a heart condition?

I had a very large heart murmur at a young age. I had tests done, and they determined that I had a heart condition. Interestingly, my family originally came from the northeast, and they moved to south Florida to get away from the cold weather, thinking that others in the family who also had heart conditions were being afflicted with rheumatic fever.

When did you first hear about the Alabama Genomic Health Initiative?

I go to The Kirklin Clinic of UAB Hospital for a lot of my follow-up care and post-heart transplant care, and they have a table set up right outside the lab where I frequently have to get blood drawn. I was aware of the genetic abnormality that others in my family in later generations had, and I just wanted to confirm that I had the same thing. My results were consistent with those of others in my family. Also, I wanted to make sure I didn't have anything else. If there are other things in the cards for me, knowing that may help me prevent or deal with it ahead of time.

Tell me about your experience enrolling in the AGHI and receiving your results.

There was literature at the table and people to explain what they were doing. There was nothing to it; just getting my blood drawn at no expense. Then I received my results. I had a phone conversation about my results and received follow-up information in the mail. They explained the nature of my genetic abnormality, some of the implications, and they recommended certain things I should do about it.

What encouragement would you give others about the Alabama Genomic Health Initiative?

The AGHI is going to benefit individuals who may have a genetic abnormality that could affect their health. It's also going to help medical science. Ultimately, it will help everybody. If more people participate in the AGHI, they may find things out that are beneficial to their entire family and solve mysteries that have been going on for years. What is it worth to find out very important things about your health and genetic makeup? The AGHI doesn't cost you anything but a few minutes and a little blood.

 

PARTICIPANT STORY #3


A Call for Men

Joe Lockett is a radio and television talk show host in the Birmingham market who covers hot topics related to political and social issues. We switched seats with him for this interview. Read more about Lockett's perspective on why men often are hesitant to go to the doctor and what motivated him to participate in the Alabama Genomic Health Initiative.

How did you find out about the AGHI?

I was talking with a friend of mine who works with the program. I didn't know what it was, so I went there, and that's how I got involved.

What was it about the AGHI that compelled you to participate?

In the black community, a man is just macho, and we don't want to go to the hospital. A lot of times we don't even know what is going on in our bodies, because we don't get regular checkups like we should. The biggest thing for me was that when I thought about what the AGHI is all about, I said, “We need a seat at the table.” When someone offers you a seat, you have to take it.

Why should men participate in the AGHI?

At 47, I’m seeing a lot of men near my age dying. That worries me. I'm thinking, "What are we doing wrong?"

Do you have a family history of any health issues that concerned you and motivated you to participate in the AGHI?

There were some things that happened in my family in the last few years that worried me. And, again, it goes back to the history of men not talking – men not telling the whole story about what's actually going on with them – and then when they found out, it was almost too late. I'm going to say this to everybody: Never wait until it’s too late. You need a seat at the table.

What convinced you to trust the AGHI enough to participate?

For me, it goes back to my wife and my kids. I took the test under duress from my wife, honestly. But when I realized what the test was about, and I sat down and really thought about what I did that day, my perspective totally changed. As I walked back in the house after taking the test, my son was there, and I looked into my wife's eyes. When your son and daughter see you doing something this courageous, imagine what they are going to do when their opportunity comes.

What are your thoughts on consenting to have your blood and data stored in the biobank for future research?

For me, it's necessary. It might save someone’s life, and if I can be a part of that, I want to.