Kira Dineen: A genetic counsellor’s view on DNA testing

Image Courtesy of Kira Dineen

"Click here to listen to the full podcast episode"

Sally sat down with Kira Dineen, a genetic counsellor and host and creator of the DNA Today podcast covering topics around genetics and health.To get us started, what do we know about the APOE, or Apolipoprotein E gene?

Kira: The protein that's made from this gene helps carry cholesterol and other types of fat in the bloodstream, so that we understand. But we're still a little bit confused about its role in Alzheimer's. So recent studies suggest that problems with brain cells' ability to process fats may play a role in Alzheimer's and other related diseases, but it's not well understood at this point.

Kira: So I think a lot of people think, "Oh, well if we're testing for it, we must really understand it," but at least for its role in Alzheimer's, not exactly.

Sally: So that's when the gene is functioning properly. He's found out, he's got two copies of the fourth mutation. I'm guessing it's the fourth one they discovered.

Sally: Do we know anything more specific about that?

Kira: Yeah, so we all have the APOE gene. So you have two copies, I have two copies. Everybody has two copies. It matters which version of the copies you have in terms of your risk for developing Alzheimer's disease in your life. And again, risk is a huge part. It's not a diagnosis. He's not at a hundred percent chance like he will have Alzheimer's. He's just at a much higher chance than the general population.

Kira: So there's three different variants. I don't know why, they start at two.

Sally: Oh, that's really confusing.

Kira: I know, right? It's like genetics is confusing, let's just, you know, add a little more on. So we have versions E2, E3, and E4. So the most common is the middle, E3. And so in terms of someone's risk for Alzheimer's, it's just neutral. Now, E2, it's the least common to have and it actually reduces your risk for Alzheimer's, which is interesting.

Kira: And then E4, the version that Chris has... I'm on a first name basis, so you know, we'll go with Chris.

Sally: Of course. Yeah.

Kira: So he has E4, and that is increasing his risk for Alzheimer's. Now we have two copies of each gene, right. In that clip from Limitless, the person that's giving him these results on camera at least is telling him, okay, you got one version from his biological mother and one version from his biological father.

Kira: So he has his two versions that he has, it's both versions E4, that increase your risk for Alzheimer's disease.

Sally: And having more copies of E4 is going to be incrementally riskier for Alzheimer's.

Kira: Yeah. Yeah. So if you have two copies like Chris does of E4, you have a 40 to 55% risk of developing Alzheimer's by the age of 85. So that's recent stats that I saw.

Kira: Now you might be saying, "Well, what's the chance of just, you pick someone off the street, what's their chance of Alzheimer's disease without knowing any of their genetics?"

Sally: That's exactly what I was gonna ask!

Kira: Yes, so my risk just in the general population is 10 to 15%. So it's not zero. I think that's a good thing to remember.

Sally: But it means that two copies takes your risk from 10 to 15 to what you said about 40, 50%.

Kira: Yeah.

Sally: That's a huge jump!

Kira: Huge jump. You're right, Sally. It's a huge jump.

Sally: So if a person finds out, they do a genetic test and they find out like Chris Hemsworth, they've got two copies of the APOE4 for allele, so they're 40 to 50%, basically flip of a coin if they're gonna get Alzheimer's.

Sally: Is there something that people can do for Alzheimer's to try and mitigate it? Because the risk of, I don't know, diabetes people can take lifestyle actions to try and mitigate that. Is there anything you can do for Alzheimer's?

Kira: Yeah, it's actually similar. So I think one thing to think about with this is that, if I want to reduce my risk for Alzheimer's, and if Chris does, we'd be doing the same thing.

Kira: So it's not necessarily something specific that if you do the test, oh, well now you should do this. It's just he has even - and he said in an interview - he has more of a motivation now to do this because he knows his risk is, as you said, a flip of a coin. So knowing that he's like, "I am highly motivated to do everything I can to reduce the risk of Alzheimer's, of developing that."

Kira: So I mean, as you alluded to, maintaining a healthy lifestyle. So just, you know what your GP would say, right? Exercise, diet, not smoking, staying physically mentally active, can protect against cognitive decline that goes with Alzheimer's.

Kira: And even just managing other conditions. So like you mentioned, diabetes, if someone has diabetes, just trying to reduce the effects of that. Looking at trying to keep your blood pressure and cholesterol in a normal range, which cholesterol kinda makes sense because remember at the beginning I mentioned APOE helps to manage cholesterol so that connection makes sense.

Sally: But it's not like another very famous celebrity genetic diagnosis of Angelina Jolie and BRCA genes. I remember that because we were probably both teenagers when that came out. And she had a preventative double mastectomy, if I remember rightly.

Kira: Yeah.

Sally: Because she found out she'd got whichever genetic versions of the BRCA gene that made her most at risk for breast cancer, and that is very much, I mean, it's a drastic option, surgery, but it's something that you can do to dramatically reduce your risk.

Sally: It seems like Alzheimer's isn't similar, so even if you're told, "Oh, you've got a super high risk of getting Alzheimer's," beyond living a healthy life, there's not that much you can do with that information.

Kira: At least right now. So I mean, you've seen through Genetics Unzipped how fast genetics changes, right? Just in the time that you've been the host.

Kira: So looking at that I think I would hope in the near future, and certainly in our lifetime, I would hope again that we would have more like, "Oh, if you have this version of the gene that's increasing your risk, it's E4, whether you have one copy or two copies, well, maybe specifically you should do this."

Kira: I think the only thing that would be on my radar is if there's clinical trials and as part of the clinical trial, the inclusion criteria is you have to have two copies of E4 and you have to have that documented before going into the trial. That's the only thing I can think of.

Kira: I mean, I think the only other thing just for anyone to do is, it's interesting, there's been studies saying that being socially engaged and having strong social connections, family, friends, that decreases your risk too. So just outside of maintaining a healthy lifestyle, I think that's not under that umbrella that I think of when I hear that, but it's interesting. I'm sure a lot is gonna change in our lifetime.

Sally: So we referred earlier to the fact that Chris Hemsworth was doing this TV documentary. He was undergoing a huge battery of tests, like more than the normal person would, and I have some medical doctor friends who will say there's a risk of testing. Because if you test someone for every disease, you'll find something. If you look hard enough, you will find something wrong with them. And so given that there's only so much you can do if you get this, and I have to say Chris Hemsworth in the interviews is very careful not to say it's a diagnosis, but to get such a strong indication that you might develop Alzheimer's, you with your genetic counsellor hat on, seeing people coming to you, would you recommend that someone gets their APOE genes tested or not? Because there must be a huge mental burden knowing that you are likely to get Alzheimer's, and there's very little you can do.

Kira: Right! It's like, you know, compared to Angelina Jolie with her high risk of breast cancer, that was like, okay, I'm gonna do surgery, remove breast tissue and drastically reduce my risk, where Angelina Jolie actually is at a lower risk of developing breast cancer at this point than I do. So I have not had any genetic testing for cancer. I have not had any surgeries, but because she's removed that breast tissue, she has a much lower chance than me just being in the general population.

Kira: So, as you pointed out, that was not maybe straightforward, but there's clear cut options for her. Now, for Chris, it's kind of like, okay, well what does he do at this point, other than what we mentioned, just kind of like generic lifestyle choices. So I think as a genetic counsellor, I'm not someone that ever says, "Oh, I recommend you do this."

Kira: So it's more like, "Here's your choices. Let me educate you on the choices and see what's the best fit for you and your family."

Kira: So it's really just seeing what the best fit is. So I think if I was in this situation of talking to a patient and figuring out if this is a match for them, I would ask them, "What would you do with this result? If you find out you're at high risk, is there anything that you're gonna do differently?" Some people may say yes. Some might say, "Well, no, cause there's nothing clear cut."

Kira: I would also ask, is it the right time in their life to pursue this genetic testing? Are they going through a family hardship? Are they starting a new job? Did they just move? Did they just get married? Are they pregnant, having a baby? Or is their partner pregnant? So other life stressors, is this really the best time to be looking at this information?

Kira: And then overall, just like any decision we make in life, are the advantages outweighing the disadvantages? Because I do worry about that anxiety that goes with it where, yeah, you can do some stuff, but not really too much. For me looking at this, I'm holding off on doing this and you know, if there's something clear cut that says, "Oh, well if we know you have this variant we can start doing ABC", then maybe I would consider it.

Kira: But at this point, for me personally, I don't see that this is really advantageous and helpful where some people might say, "No, I wanna know because that will finally kick off me getting to the gym, having that healthy lifestyle and everything else."

Sally: So you are by day a genetic counsellor. First question, what do you do as a genetic counsellor? We are talking about this very specific issue, but more broadly, what does your job entail?

Kira: As a genetic counsellor, there's so many different facets of people's jobs. But I think in general, what genetic counsellors do is help people understand genetics, how it applies to their health and their family's health, and how it could apply to them.

Kira: In my sector I work with pregnant people or people looking to become pregnant and going through, as you alluded to, family history, going through biological family health history, and seeing if there is anything in the family that we should be aware of, and then go through genetic testing options. And review ultrasound findings or just the ultrasound they just had.

Kira: So that's like a typical intake appointment for me. And then depending on that testing, if something comes back that there's a higher chance for their pregnancy to have a condition or to have a future pregnancy if they're not currently pregnant, to have a condition, then we're going through that and kind of looking at next steps and more education.

Kira: So it's a very interesting job.

Sally: And what is best practice? Like as a patient, do I go to my GP, they order a genetic test, the results come back and they're like, "Oh, there's this thing, I don't quite understand it. I'll go and see a genetic counsellor," or is it you go and see a genetic counsellor and they decide whether you should do the test?

Kira: You could do either way. So I think it depends if your GP is comfortable ordering genetic testing. Some will be like, "Yeah, I'll do it. And if something comes up that I don't understand, I will reach out to someone to educate me, to educate you as the patient or refer you out."

Kira: Others will say, "You know what, I don't know too much about this. I would feel better if you saw a genetics expert, like a genetic counsellor, and then went through that."

Kira: So I have both. I have patients that are referred to me because they have something come up on genetic testing that I didn't order. And then I have some that come to me because they wanna talk about testing being ordered.

Kira: And I mean, obviously I'm gonna be biased because I am a genetic counsellor, but I think it is really great to meet with someone that's very well versed in genetics to go through, do you wanna do this test or not? Just like we talked about for looking at your APOE status, like it's not necessarily just, oh, okay, order the test. There's a lot more to consider behind that. There's always reasons to do the test and always reasons not to do the test, and you kind of have to weigh out both sides. And I think it's helpful to talk to someone that really understands the genetics and the testing so that you can have that thought process and dialogue out loud with an expert.

Sally: What are some of the reasons for getting a genetic test?

Kira: So we talked about the cancer space of knowing, let's say you have a family history of breast, ovarian, prostate cancer, colon cancer, stomach cancer. I mean so many different kinds that if we see a certain pattern in the family, or people at young ages with cancer or rare cancers - so lots of different setups. But if we see that going through and saying, "Well, if you wanna know your personal risk, doing a genetic test might help us narrow that down a little bit more and get more specific with it." So I think that's the case for a lot of different genetic conditions.

Kira: Even in the paediatric space, if you have, you know, an undiagnosed disease, maybe it's a rare disease, which is more common than people think. About 1 in 10 people in the world have a rare disease, so you know, obviously individually they're rare, but collectively they're quite common. And so looking at, okay, if you have an undiagnosed disease, that's gonna be much harder to treat, to understand maybe what to expect next. Whereas once you have a diagnosis, you might have more of a map and looking at, okay, what are my next steps?

Kira: And as I mentioned, being eligible for clinical trials. Oftentimes you need to have a genetic diagnosis or a genetic result to be able to be eligible for a lot of clinical trials. So I think it's just, having it be more understood and having more information at that point can be really helpful.

Kira: And then definitely in the cancer space looking at, okay, are you doing any screenings or surgeries to reduce your risk to develop that cancer? And sometimes can't speak as much to the UK, but in the US the insurance is more likely to cover those extra screenings if you have a genetic test to back that saying, "Well, I need this, I need more mammograms than the average person because of my BRCA 1 or 2 status."

Sally: Gotcha. And are there, perhaps you wouldn't recommend someone against getting a genetic test in your position, but are there any things that you think people should consider as reasons why they might not want to, that they don't tend to think about.

Kira: Yeah. Yeah. So I think it's looking at incidental findings. So that's if we do a genetic test for a certain reason and then we find out something else that wasn't the intention of the test. So let's say in a paediatric space, we're testing the kid that has this undiagnosed disease and we say to the biological parents, "Hey, it'd be helpful to look at your DNA so we can rule out some changes."

Kira: Sometimes when we go to do that, we might find out, "Oh, wait a minute, none of this is lining up. That parent is not actually the biological parent."

Kira: That wasn't the intention of the test to look at paternity or maternity. And that kind of applies to other things, especially in the direct consumer space of people just ordering their own testing, of looking at ancestry and finding relatives. You may discover something about your family that you were not expecting to find out. You know, someone in your family is not biological or finding a biological relative that you didn't know existed. So it can definitely shake up a lot of families, understandably, and it's more common than people think.

Sally: Let's move on to talking about direct to consumer genetic testing. So these are the companies that people have heard of, like 23andMe, AncestryDNA, MyHeritage, all of those ones. You order a kit online, you send them your spit in the post, and then they come back and they tell you about you supposedly.

Sally: And they're now ranging, they're as low as about 50 quid I think for some of these tests. So incredibly cheap and people might have heard Chris Hemsworth talking about his Alzheimer's diagnosis, have thought, "Hey, I wanna get that test." But rather than trying to book an appointment with their GP, they're just like, oh, just do it online. I don't know if you can get your Alzheimer's risk, I think some of them you can get your Alzheimer's risk predicted.

Kira: It's in 23andMe, at least I know because I've looked at a friend's result just to understand what it looks like in that portal, and I imagine other tests as well.

Sally: So if someone chooses to go down that route, firstly, how accurate are these tests? Are they as accurate as the sorts of genetic tests you get through your healthcare service?

Kira: So for what they look for, in general, yes. But what is different from if you saw a healthcare provider and had them order it, that would be considered medical grade testing or clinical grade testing. The big difference between them is that these direct consumer companies where, as you said, you're spitting, you're putting it in the post, that is looking at specific spots in certain genes and saying, is there a change in that spot or not? Now, medical grade testing in general, you are not just looking at one spot in genes, you're actually reading through the entire gene, or like 99% of the gene, and looking for any changes in that.

Kira: So some of these companies do look at BRCA 1 and 2, so as we talked about with Angelina Jolie, breast cancer risk, ovarian, prostate. For, you know, one of those companies, they look at three hotspots on the gene. Now, a lot of people have, if they have a mutation in one of those BRCA genes, it's likely to be at one of those hotspots. But it also just could not be. There's probably like a thousand mutations or something that could be present.

Kira: So if I did 23andMe or one of these other companies that offer BRCA testing and it comes back negative, it's not that I don't have any mutation in my BRCA genes, it's that the three that they look for, I don't have. So I feel pretty confident for those three mutations, I don't have that, but what I get scared of is people not understanding the limits of the testing to know it's just these three, it's not the entire gene. That's the part that I don't think people are getting, and then they're thinking, oh, I'm completely negative. And then they'll tell healthcare providers, "I did testing, I'm negative." Well, let's get into the nitty gritty there because I don't want that to be missed, and then you find out later, oh, I had a mutation, just a different spot in the gene that these companies didn't look for.

Sally: They're only looking for the common spelling mistakes, not any spelling mistakes.

Kira: Yeah, you got it.

Sally: I mean, a lot of people, some friends of mine even have gifted these tests. They've given tests to people as a Christmas present and they will just tick the "Do you want to include the health section of this test?" Because you can do just ancestry or include ancestry and health.

Sally: And I think a lot of people won't read the fine print of exactly which conditions are being tested for. But they're getting all this information about their health that they didn't specifically ask for. Surely more information about your health is better, like the more you know, the more you can deal with and prevent health issues. Is that right?

Kira: I think it depends on your perspective. I tend to be in that group and I find a lot of patients of mine being kind of New-York based, a lot of patients have that similar thing. Well, why wouldn't I do the test? And I think it's looking at what you are gonna do with that information. Similar to what we talked about with Alzheimer's, like in, you know, cancer risk, okay, what are you gonna do with this? Is this just going to weigh on your mind?

Kira: I think in the pregnancy space, doing something like looking at cystic fibrosis to see if someone's a carrier along with a ton of other conditions... I don't just order that, for genetic counsellors listening, like, "Why is Kira only ordering that?"

Kira: So when we're looking at that, okay, if I found out both biological parents are carriers for this, what are you gonna do? Are you gonna do anything about this during pregnancy? Is it gonna affect anything? Are you gonna wanna do later testing to see, okay, did the pregnancy actually inherit that or not? And that involves invasive testing where we take a needle through the abdomen or a similar test. And some people might say, "Whoa, hold on I don't wanna do invasive testing. This won't change anything for me during pregnancy." So then if I hear them say that, I'm like, "Okay, well then do you see a point of doing the testing?"

Kira: Whereas if someone says, "Yes, I would want a test because either I wanna prepare to have a child with whatever condition we're looking at, start meeting people in the community, start lining up doctors that might be helpful." Maybe having family move closer to be a support system. Lots of different considerations, right? Or they may decide, yes, I would wanna do the testing and I may consider ending a pregnancy.

Kira: And that's why these conversations are so important. And when people just order this testing without talking through this with someone, that's what I worry as you said, how many people read fine print? I don't read terms and conditions. I scroll to the end unless it's like a legal document that I'm signing. I'm not reading that, let's be honest. So I think a lot of people are just skipping ahead and so I think you really gotta think about it, especially giving it to someone else.

Kira: A few years ago, even my mum brought up, "Oh, what do we give the grandparents this year, should we do one of these DNA kits?" And I'm like, oh, hold on. That could stir up family drama. My family's pretty boring when it comes to stuff like that, luckily. But you never know.

Sally: Well, you think they are!

Kira: I think they are, right. I don't know!

Sally: Speaking of families, there's definitely the issue of say I get my genetic test done. I find out I've got this horrible, incurable disease that I can't do anything about. My genetic information is shared with my blood relatives. How do you help someone negotiate that?

Sally: Do you tell your sibling that they are likely to also have a horrible incurable disease? Do you tell your parents, your kids, if they're likely to inherit it? Are you the person that helps people process these kinds of complications?

Kira: Yes, so when we're in a situation where it's not a random condition that comes up. Sometimes when I do testing, Down syndrome will come up, the vast majority of cases, that's a random condition.

Sally: By random you mean it's de novo, it's happened in that one person. They've not inherited it.

Kira: Correct. There's definitely cases, lots of de novo random occurrences. But the other bucket of genetic conditions is some form of being inherited. So if you look at, especially say, identical twins, if one person does testing, you are automatically finding out for your twin what their genetic status is. And so that's tough, right? Because you're deciding for them.

Kira: Now, most people don't have an identical twin, but they have other biological family members. So it is weighing out telling them, and I think in general it's probably a good idea to say, "Hey, I came back with this result." If you feel comfortable sharing that saying, "My genetic counsellor or whoever brought up that you should consider doing testing because you have X percent chance of also having this."

Kira: Let's say I find something in me, I have a full brother. My full brother has a half chance of also having that. So I did my own carrier screening. I did like over 500 conditions and so I found that I'm a carrier of one condition, as most people are, right? As you said at the top of the show, the more we test for the more likely we're gonna find something. Same with carrier screening. So out of 500 whatever conditions, I came back for one.

Kira: So I was talking with him about it and I was like we both don't have kids. We're not planning to in the near future, that's more long-term. But looking at, okay Jeremy, you have a 50% chance of also having that because we're full siblings. Now being a carrier for something that's not as concerning because it doesn't affect my health. It wouldn't affect his health. But other things like cancer, talking about your APOE status for Chris's siblings, Liam, whoever else. I'm a Hemsworth fan, so I know Liam. So all his brothers, I believe they're full brothers, that they also have a chance of inheriting this. And especially with his status of having two E4 copies, that means he inherited one from each parent, so at least his parents have, each of them have one copy of E4, so his siblings have a very high chance of also having this.

Kira: So even him doing the testing, we now know Liam and he at least has one other brother, they have a high chance of also having this. So you're kind of finding this out for them. It's tricky!

Sally: And then making that public.

Kira: And then making that public! I don't know if he had conversations with families to be like, "Hey, is this okay to talk about?"

Kira: Because you start getting into, even when you do direct consumer testing, you mentioned that it's relatively inexpensive. One of the reasons that's inexpensive is because some of these companies are selling your data to other people. They're making a profit off of your DNA, which I knew about, and I was like, all right, I wanna experience this so I can talk about it on podcasts and whatever else with patients. And I was talking about this sitting with all my cousins and, you know, I said something about sending in DNA. And one of my cousins, we're always joking around, and he's like," You didn't have my consent to send Dineen DNA to this lab. You're sending part of my information!"

Kira: Now, I'm not sending as much of his information as I am my brother, because I'm biologically closer to my brother than my cousin. But he has a point, right? I'm sending all my information to this company, who knows exactly what they're gonna do with it. They could be bought out by another company, a lot of different considerations.

Kira: So yes, when you're looking at the cost of the testing, it's like, oh, that's pretty inexpensive. Different things like St. Patrick's Day, "Find out if you're Irish 17% off!" or whatever kind of sales they're doing. Right? But you gotta think about the big picture of, okay, it's more than just buying the test. You're also giving them this really valuable information.

Sally: So given there are so many things for the average person to think about before getting a genetic test, how is it gonna impact them? Can they do anything about the diseases that might crop up in their report? How is it gonna affect their family members and their relationship with their family?

Sally: Do you think people should be able to just order these kits online without speaking to a genetic counsellor because can someone give informed consent for one of these tests without knowing all of the implications?

Kira: That's the golden question, right? Like for some of these companies, they have things set up and they've added more over the years of, okay, you have to watch this video before you can proceed to order the test, or you have to read through this. You have to take this quiz to make sure you actually watch the video and you didn't just turn it on, do the dishes. So I think that's a great step in the right direction. I think it's great for people to have access to order this themselves, but there's only so much we can do to make sure they're actually getting this information unless they're talking with someone.

Kira: But even if someone's sitting across the desk for me, like I mostly counsel in person. Sometimes you can tell they're so engaged, right? They're looking, I have a PowerPoint to refer to. We're chatting, they're asking good questions. Other times they're just sitting here, sitting back. I can tell I'm boring them, and I'm really talking just to myself. It happens, right? We're tired, we're this, we're that. So even in those scenarios, I wanna make sure it's informed consent, but I don't necessarily want to take away or think we should, of people being able to order their own testing.

Kira: I think there's this great happy medium where there's physician-assisted testing where it's not quite direct consumer, but you can put in basically a request for an order and pay for a kit and a physician looks over, or a healthcare provider, will look over that request and then make sure it makes sense and everything.

Kira: So I think that's kind of the happy medium. And you know, even through my podcast DNA Today, we have some sponsors that have that set up, which I really like because then it's somewhere in the middle because not everyone even has time to sit with a genetic counsellor. They may not be able to afford to do that. There may not be someone within a radius where they can drive or take public transport to. They may not have a stable internet connection to do a telehealth call. So I think we don't want to limit people being able to access this testing.

Kira: So I think that's one aspect to think about. But there's a lot, right? Like ideally everybody would meet with a genetic expert, talk about it, is this right for you? Then order the testing, then go over the results. But there's just also not enough genetic counsellors to do that.

Sally: I often get people asking me, because they know, even before I started working on a genetics podcast, just as a biologist, "Oh, I'm thinking about doing one of these tests. Should I?"

Sally: You must get that even more being professionally a genetic counsellor.

Kira: Oh sure. I'm at a party and people are like, "Yeah, so designer babies," or, "Tell me about this," or, "Which company should I do? Which is the best?"

Sally: So for the people listening at home, I'm sure a fraction of the audience will have been thinking about getting a genetic test. These are genetically savvy, genetically interested people. They listen to a genetics podcast, right? And they're not quite sure if they should get a test or not. What would you say to those people?

Kira: I think, think about, as I said and look at research, actually read that, maybe not fine print, but medium print or whatever, to see what is it testing for, what is it not testing for? What are you gonna do with this information if you find out? Do you feel comfortable talking with biological family members to say, "Hey, I learned this. This is your chance."

Kira: And outside of the health information, if you're just looking at ancestry, biological relatives, I think it's more just, are you gonna find a family surprise kind of thing. I'm not so worried about anything else.

Kira: I think the ancestry is really cool. I did it and I've done it with a couple companies now and some of it as someone that is of European ancestry, it gets so specific where it even says, not only am I a good chunk of my ancestors from Ireland, but specifically Cork Ireland, mostly East Cork Ireland. Like, that's how specific it gets. It's wild!

Kira: Now, you know, there's a big discrepancy between people of European descent and non-European descent of how specific it gets. But you know, I think that stuff is just cool. As long as you're prepared where you could find a surprise in your family that someone's not your relative, or there's a new relative out there you didn't know about, I don't think there's too much concern of doing that testing other than, you know, you're also sending your DNA to this company. You don't know what they're gonna do with that. You don't know exactly what you're signing up for.

Kira: So I know some people will send it in with an alias. You might write Hermione Granger instead of your name or something. Or you might write Thor, maybe Chris should have done that...

Sally: And it is important to say that the vast majority of the databases and the data sets that this research comes from is on, as with everything in genetics, white European populations.

Kira: Yes.

Sally: And so the accuracy of the results as well is going to be better if you've got a white European heritage versus any other genome in the world.

Kira: Yeah, exactly. Unfortunately, that is how genetic research started, looking at when we first were drafting the human genome 20 years ago in 2023 now. Really a landmark that we've hit. But yeah, they were looking at European genomes and a lot of research has been with that, and so that's something in the world we are addressing. I wish we were addressing it faster, but we are making progress with it.

Kira: But I think that's something to think about, not just for ancestry, but really any test. When I do carrier screening that I've been mentioning, if I have someone that does not have a European background, there's a higher chance it's gonna miss that they're a carrier for something compared to if I have a patient that has a European background. So there's a lot of difference, and that could be a whole other episode, but that's a big consideration in our field.