Gina Davis is the founder of Advocate Genetics and a co-founder of EM•POWER donation, an education company dedicated to empowering choice in embryo donation. In the past she has been a genetic counselor at PacGenomics and UCSF’s Center for Reproductive Health. She’s passionate about impacting the growing field of genetics counseling, and has worked tirelessly to train new genetic counselors, and provide a strong foundation for fertility patients. A former fertility patient herself, she understands the challenges patients face as they try to make sense of the rapid advancements in genetics and fertility medicine, and works hard to help doctors and patients make educated decisions about their options.
In this article, we’re going to cover everything a fertility patient needs to know about genetic counseling and genetic testing, and we’re going to talk all about EMpower Donation, a little more about Gina’s passion and what she’s bringing to patients not just in the US, but around the world.
Dr. Aimee: Thank you for joining us Gina. What drew you to the field of genetic counseling
Gina Davis: I have kind of a jokey answer. Because it’s the best job in the world. But I think you probably want a little bit more detail. To be honest, I was really confused in college. I didn’t really fit a box clearly. I’m interested in almost everything. Medicine felt like a good way to aim high, so I was a biology major. I dabbled with animal research a little bit, but I hated it, and it turns out that I’m allergic to rabbits and I’m allergic to latex, and that was just very complicated. Physically, it was painful to go to my research rotations.
So, I had a little quarter-life crisis for a while there. I was really uncertain that I ever wanted to touch a patient. I was starting to think about it, and I thought I love science, I love people, but physically the idea of working in medicine didn’t appeal. I think that’s because I’m actually an armchair philosopher.
My second major in college was English, and my favorite thing in life is to read and to write, and find interesting people to talk to or listen to, I love podcasts and things. I believe in people, and I like to learn from people, I like to learn things for people. I think I’m a good coach in the sense that I like to help people find their strengths, their knowledge, and their wisdom, and come through challenges.
Combining all of these things, I had my little quarter-life crisis and started to really question things. Magic happened and I found this little gem of a field in genetic counseling, and I thought that is for me, boom, that’s it. Honestly, I have not looked back.
The reason I went into fertility is because, honestly, I’m just fascinated by reproduction. I think probably like you, I had a nerd level fascination and it’s just never gone away. Since I learned that pregnancy, periods, babies, and sex (sometimes) are all related, and then I got a peek at the genetics and ethical issues, I thought that is the field for me. I went into genetics specifically in infertility because I thought there are going to be so many new problems to solve and new questions to ask and untangle with people, and I thought this is it.
Dr. Aimee: Having someone like you to talk to my patients just makes me feel so good. Because I often worry that when I tell patients to go over their genetic testing results, they think that something is wrong with them. I think by us talking about this right now, it’s not about talking about what’s wrong, it’s about how knowledge is power and how this information can help better inform your decisions. Sometimes talking to someone like you would make patients feel like, “There isn’t anything wrong with me, when I thought that there was so much wrong.”
Gina Davis: 100%. We all have things in our genes that are different. That’s why human diversity is beautiful. I think the issue comes down to what does this mean for you when you find out about a genetic issue. It doesn’t mean the same thing to everyone. Everybody has very different personal responses to hearing about something that’s genetic. It’s really a wise thing to sit down and take a moment with it and to spend time thinking through it with somebody that has been there before with people and to contextualize.
Dr. Aimee: Right. The word mutation, is there a better word I should use?
Gina Davis: Mutation is the proper word in that sense. We can use the word variant. Variant is less stigmatizing. If we think about it, mutation does have a negative connotation, but it’s correct. Variant signifies something that is a difference. It also signifies that it’s more meaningful, which is that variants are not always so black and white, there’s all these shades of gray.
It really is more realistic and specific that variants have different levels of penetrance and different levels of impact. I think you could use the word variant, and I think a lot of people do appreciate seeing it that way. Also, understanding that sometimes a variant can be a serious issue that you need to think about.
Dr. Aimee: Right. How does genetic counseling fit in the fertility world?
Gina Davis: I think there are some things that are really beneficial about the fertility world. It’s a space where we’re really intentional about pregnancy, so we have a little time to breathe and ask ourselves are there any genetic risks worth looking at.
Sometimes that means we do a carrier screening panel where we’re looking for hidden genetic risk. Those are more routine these days, so you might have an opportunity that you might not have had if you had just gotten pregnant on your own. You might not have taken the space to do that before pregnancy, so you might not have known about a risk that was inherent to the specific coupling, so between the individuals.
Sometimes fertility patients are considering testing on embryos, checking for routine chromosome problems, or they might want a better understanding of the pros and cons of doing that testing or results that might be a little confusing, wondering can they transfer them anyway. They might be interested in working with an egg, a sperm, or an embryo donor, and want more information that will help their child down the line, and this is a really unique opportunity to gather that information.
I think there’s just more space. You may have more time, in the fertility purview. I mean, they’re thinking about their babies in the future, so they have some time to reflect. If there’s something in the family history that has always made them wonder, they can come in and ask questions. Sometimes there’s something we can do about it.
As genetic testing improves, and like everything else in the world these days, it’s been exploding, there’s a lot of things we can do about genetic risks we see. Some people might want to test embryos to transfer embryos that don’t have a genetic condition, for instance.
Dr. Aimee: What can genetic testing tell someone about the egg and the sperm that is coming together to make an embryo?
Gina Davis: The testing that’s often done in advance of a cycle looking for those hidden risks might reveal something that deserves reflection. Most of the time, this will be really reassuring, honestly. The vast majority of couples will find out they’re not carriers of the same thing. They might be carriers of different things, because we all have genetic variants, but they might pair up and match up and make a serious risk.
That said, they might discover something that they want to take action on, there could be a serious issue. They might consider testing their embryos before transfer to select the embryos that are not expected to have the condition. That’s called PGT. Or they might look at other options, egg donation, sperm donation, adoption, embryo donation, a bunch of other options that are out there, or something like prenatal diagnosis. So, for instance, If they decide to do a lower tech treatment, like they do an IUI, and they might decide they want to test the pregnancy down the line.
These are all the things that we would walk through with somebody that is interested in using genetic information to make some decisions.
Dr. Aimee: What would you say to someone that says to you, “I don’t have any of these things in my family, so I don’t really see why I need to test for this carrier screen that you’re offering me.”
Gina Davis: The vast majority of us don’t have a family history of the condition we’ll find on the carrier screening, because it’s recessive in nature, typically. That means that it can be hidden for generations. Usually, with autosomal recessive conditions, that means that both the sperm provider and the egg provider are carriers for the same condition. We wouldn’t know that just by looking at ourselves. So for me, I wouldn’t know that by looking at my husband (or his family history): “Oh, you’re a carrier for cystic fibrosis,” or whatever.
Actually though, if you think about the cobbler whose kids go without shoes, I didn’t do a whole lot of genetic testing. I did some research testing on myself way in advance of my IVF cycle. I never even tested my husband, so I don’t know what he’s a carrier for. But I can tell you I’m a carrier for hemochromatosis and I’m a Fragile X intermediate carrier.
So we’ll find out stuff about ourselves. We don’t know this unless we actually do that testing. The testing isn’t perfect either. It’s only going to give you a limited view of what we think are relevant tests that should be included in these panels at this time. But that is ever changing itself because of technology and more knowledge.
Dr. Aimee: It’s funny, I actually tested my husband, and I didn’t test myself.
Gina Davis: Ha! Well, I did a cancer panel as well, I shipped out for a cancer panel. There are so many things we can do these days if we want to take ownership and learn some things, but it’s not for everybody. The interesting thing is that everybody has a different sense. My husband is not as interested in this stuff as me. I’m interested. I’m interested in the sense of a partner couple. I look at those things and I’m taking this family history and in the nicest way possible helping family members in our family to go, “Is there something I should be addressing?”
Everybody has different levels of interest in that, so it’s very common for one member of a couple to be like, “What?” and the other to be like, “We need to do this testing. We need to ask these questions.” I think that a lot of people do benefit regardless of their level of interest at the beginning. A lot of people benefit once they start really seeing it, like this is about me, my healthcare decisions, and my children’s healthcare decisions, and this could really help us. I think then most people are like why not spend the time to think about these things now.
Dr. Aimee: Right. Especially because a lot of times we’re talking to people even before they’re pregnant. To find out this stuff in pregnancy can sometimes be even more traumatizing than learning about it pre-pregnancy. You and I both probably talk to patients who have learned that they’re both CF carriers because they had a child affected by it. That can be a really tough thing to go through when you’re finding that out in pregnancy, for example.
I love how you use the term egg provider or sperm provider. Usually, I say donor, but I actually like the term provider. Whoever and however, wherever you get this from, how should they be thinking about genetic counseling and working with someone or your company for donor egg, donor sperm, or donor embryos? What can they actually get from the consultation that they do with you?
Gina Davis: We provide donor risk assessments on the front end for a lot of donor agencies and clinics that run their own egg donor programs. Even for donors that are direct donors that are family members or friends, we will often do a genetic risk assessment in partnership with their doctor to help them just know what we can capture at that time in terms of a family history risk assessment and carrier screening and looking at those recommendations. We often provide that as a front end thing.
Then we often provide match consultations, too. That’s where people can set up a consultation to review what’s known, how does this knowledge help in making medical decisions for their child down the line, what are the limitations of this knowledge today, what’s going to change in the future. All of those things are really important.
I would say we do mostly egg and embryo donors and that we’re really doing genetic risk assessments, because the sperm banks are a little bit outside of our purview right now. We have done a few directed donation consults. Then doing the match consultations with the intended parents.
Some of the interesting things that are brought up there are really about the genetic risks that we’re seeing in a family history and just looking at that partnership. Oftentimes when you’re working with a donor, you’re thinking about these things in isolation. Oftentimes, you might have even used your own gametes first, so you’ve done your own genetic screening, you’ve found out about your own genetic history, and then things change, and you decide to work with a donor.
It’s a really good time to stop and ask are there any differences now, are the carrier screening things lining up, are there any genetic risks coming from family history that we should be concerned about. Things that are not so straightforward from a genetic perspective, but important things like mental health history. It’s just a time to reassess and say, “Does my husband’s history change things now that we’re working with an egg donor? Is there anything that’s not lining up that it would be good for us to think about?”
Secondly, taking a step to thinking about the meaning of moving to donor and how comfortable you’re feeling. We’re not mental health providers, but we are counselors. With this specialty in genetics and focusing on what genetic identity issues are and genetic risk issues are, it’s a really good space for intended parents to forecast some of the questions their own children might be having and thinking through how they’re going to respond to that, and really conceptualizing what it means in this day and age to work with a donor.
Maybe if it starts out in an anonymous fashion with the changing of genetic testing and everything that’s not really possible anymore, so really thinking through disclosure issues from the perspective of what in the future does this really look like for my child down the road. That’s where my work intersects with EMpower.
I don’t mean to keep being so verbose.
Dr. Aimee: No. I love it. I love everything that you’re sharing. For patients who have done IVF, and we talked a little bit about genetic testing and PGTA and PGTM, can they do a post-test counseling session with you to review their PGTA report and to get a completely different unbiased opinion about their embryos and how they should be prioritizing them if they’re abnormal, for example?
Gina Davis: Absolutely. That’s the thing, this technology is changing every day. Our understanding of biology is changing every day. What does that mean for embryos that were tested on a platform a few years ago? What does that mean for the tests we receive today? How are clinics different in terms of how they approach these genetic test results?
We provide completely unbiased results. We’re not affiliated with the labs. We’re here for the patients, we’re genetic counselors in their corner. We’re here to be an advocate for them, to look at the nature of testing, what we really know from it, and how they can make decisions that are in their best interest.
Dr. Aimee: I want to talk more about EM•POWER Donation. Can you tell us about EM•POWER?
Gina Davis: I would love to. It’s my passion, really. I’ll have to go back into my backstory a little bit. I was also a fertility patient, in 2010 is when I did my cycle. At the time, I was a younger genetic counselor. Because of the patient population we see, I had seen some pretty rough cases. I think that I went into my stimulation carrying that.
When my stimulation went really well, I didn’t really know how to handle it. I decided to throw caution to the wind. It was back when egg freezing wasn’t really done as much, it was experimental. So, we decided to fertilize all of them, and then we ended up with a lot of embryos. Too many. I knew that I was going to have my whole family in my one cohort, it was pretty obvious from looking at the morphology and stuff, unless there was a uterine issue. Thankfully there wasn’t, we turned out to be okay.
Ultimately, we ended up with more embryos than we could use. It really put me in this personal place of all of my work, everything in front of me, all the patients’ hearts I’ve seen pour out for this opportunity, and I’m just given too much of it. I just didn’t know how to handle all of that. Over the years, we’ve decided to become embryo donors. Working through that decision was really complicated for me. It was not easy because it was so personal and so in touch with everything that I do professionally that I couldn’t separate things, and I had to go through a lot to get to a place where I could make a decision on what to do.
In that work, I had to tangle with my complex feelings. I learned a lot about the donor-conceived population, learned about how they’re feeling today, the adult donor-conceived population. I started thinking more and more philosophically about what all this means. I ultimately decided that I need to use my platform to help other people untangle this stuff, too, because it’s not easy. Especially with people that have been affected by IVF, they’ve already been through one traumatizing experience often to get to their baby. Then to get to this second layer of decision making can be really paralyzing.
I joined up with two amazing cofounders. Jenn Vesbit, who is also an embryo donor and a counselor. Maya Grobel, who is an embryo recipient and licensed clinical social worker. She also did a documentary called One More Shot that you might know about, with her husband, showing their journey to parenthood. I partnered up with them and we got this grant to educate people about embryo donation. It’s really just transformed my life. This all interweaved. I’m spending my time with them helping to educate and empower families thinking about embryo donation.
Dr. Aimee: Do you think that your platform could one day also be a way for people to find embryos if they want to be a recipient or for donors to find a place to share the information about their embryos for others?
Gina Davis: That is our next step, and we’re working very hard on it. Yes. We are going to be working on a platform where people can meet and actually normalize this experience. The thing is that there’s not a lot of support for people that decide to donate or decide to become recipients and become parents through embryo donation, and donation in general.
That’s our goal is really to normalize it, because it’s not just a decision you make once. A lot of times, with the new genetic technology, this is a decision that’s going to impact the rest of your life. You’re going to probably have some contact with this other family. What does that mean? How do you handle those relationships? What does it mean on the front end? Should you create as many embryos?
For me, could I take a step back and 10 years ago make a different decision so that I wouldn’t be in this place? I could have made a totally different decision that would have completely changed things for me. Yet it’s also really wonderful. There’s a little girl out there who is genetically our daughter, but she’s amazing and she has her own family, and I get to be part of her life, too. That’s beautiful.
Not everybody chooses that arrangement. But I think these are the things that when you’re going through fertility treatment, you’re not able to see the whole picture because you’re living in a space that’s really scary. Sometimes you just need to have a hand that understands that and can help walk you through some of what that means in the context of everything.
Dr. Aimee: That’s beautiful. I feel like people are so giving now. I feel like the taboo of being a fertility patient has changed so much. I often have patients from the beginning share with me, “I want to create these embryos because I want to pay it forward and I want to donate embryos if I have extra.” They don’t want others to suffer the way that they’ve suffered themselves. I see a lot of people out there choosing embryo donation from the beginning.
I always talk to people about knowing the answer to the question, “What are you going to do with unused embryos,” and to have that answer from the very beginning. Of course, it can change, because no one imagines that they’re going to have unused embryos when they’re starting the journey. Some people can tell. I imagine you could tell pretty early on that you could have them. It’s amazing that you’re doing this.
Gina Davis: Yes. I think the other thing that’s going to be important is a lot of women freezing their eggs now, we might have totally different social constructs that develop around this, that people do share genetics and totally different new ways of creating families. Some people will have frozen eggs, and then maybe down the line they don’t need them but somebody else in their life does.
I just think we’re going to be developing new genetic and social relationships, and that they need support for those relationships. I feel a calling to go and help people, because it can be uncomfortable, but it doesn’t have to be. We can have new conversations and think through this stuff together. It can be beautiful.
Dr. Aimee: We have to grow as humans. With the way the world is right now, we need to make as many people who want to be loving parents, and as soon as possible. I’m right there with you.
Advocate Genetics also is empowering people and giving them information. You’re doing so much great work.
Dr. Aimee: Thank you so much. Thank you for all your work, Gina.
Gina Davis: It’s such a pleasure to be here. Thank you so much for having me.
If you are a fertility patient, you can visit AdvocateGenetics.com to learn more and schedule an appointment for genetic testing and counseling. Doctors and donor agencies can also use that site.
To find educational resources about empowering choice in embryo donation, or watch webinars, visit EM•POWER Donation.
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