Misha Gajewski, Cancer Research UK
Kat - Have you ever wondered what’s in your genes? Maybe you’re concerned about your risk of certain diseases, or you’re keen to find out more about your ancestry. Now it’s possible, thanks to direct-to-consumer genetic tests - such as those offered by 23 And Me here in the UK. But what’s it like to take one of these tests? And what actually happens?
Misha - Hi. I'm Misha Gajewski and I am the person who had their genes tested.
Kat - Tell me a bit about the background of this. What was the process that led you towards getting your genome done?
Misha - It was mostly just out of intrigue and also to get my employer to pay for a gene test because I thought it would be interesting to find out if anything was lying deep within.
Kat - That sounds a bit sinister – your employer paying for it. Who is your employer and why were they asking you to do this?
Misha - Cancer Research UK is my employer but they weren’t asking me to do it. I thought it would be an interesting article to write about. And so, on the premise of writing a story, I got to get my genes tested.
Kat - So how did that actually work? When people say, “I want to have my genome done” which company did you go for and what did it involve, actually the practical side of it?
Misha - The only one that you can get direct to consumer or by kind of off the shelf is 23 And Me. So that’s one we used and that’s also pretty cheap. Pretty much, anyone with a hundred quid can go get one at Superdrug.
Kat - What do they actually involved? Did you have to have a blood test or something like that? How did you get the DNA out of you and to them?
Misha - It comes in these little kits, almost the size of a makeup box. In it, there's a test tube in which you spit into which sounds horrendous and it is because you think like it’ll just be a little bit of spit like one or two, kind of “pwuh!” But it’s actually a lot and you're not allowed to eat or drink for half an hour before hand. So, you're kind of strapped with this horrendous dry mouth trying to like produce enough saliva to fill up this stupid tube. I've read a couple of articles of other journalists who had done it before and they're like, “Do not do this at work. it will be really embarrassing for you and all your colleagues will make fun of you.” So, I took mine home which didn’t actually turn out to be less embarrassing because my flatmate and a repairman were there staring at me awkwardly.
Kat - Were you like (making spitting sounds)
Misha - Yeah, just trying to work out the saliva to get it in the tube - and you just mail it back to them.
Kat - How long did it take to get some results?
Misha - So, it takes about 8 weeks. You kind of forget about it for a long time and then you get this email saying, “Your results are ready. Go check them out.”
Kat - That’s kind of a big thing because this is your genetic makeup and potentially, will tell you things about your family as well. So coming into this, what were the sort of thoughts you had about, “God, I wonder what they’ll find. I hope I don’t have X, Y, Z.” Was there anything like that?
Misha - Yeah. So, there's a couple of scary ones. So there's the Alzheimer risk, Parkinson's and breast cancer. So, those are kind of the major scary ones that I was a bit nervous about. Because I did it through work, I talked to a genetic councillor beforehand. And so, that kind of prepped me and maybe didn’t make it as scary as if I just gone and opened it without knowing what the test was really about.
Kat - Because most people who do these, they just pick it up off the shelf, spit in the tube and no one sits down and talks through it with them at all.
Misha - No, but 23 And Me does have a lot of information that kind of guides you through what the results are actually showing you especially for the scary ones like Alzheimer's and breast cancer. There's multiple steps you have to go through before you can actually see the results. So, there's kind of this 5-step process before it’s like, “Are you sure? Are you really sure? Are you really, really sure you want to see this?” And then finally, they’ll let you know what you have.
Kat - And obviously, our genome is something that we share with our family. Did you tell your family you're having this done? Was anyone a bit like, “God! What did she find?”
Misha - Yeah, so the genetic councillor, actually, she said, “Have you talked to your parents because your results are their results?” And so, I ended up calling up my mom and saying, “Would you want to know and then go ask my dad and my brother about this?” It was kind of funny. I got her to record it because my parents live in Canada so I couldn’t be there for the physical conversation. So I got her to record this conversation. When she asked my brother, he panicked. He was like, “What? Am I adopted?” He freaked out and I realized all those years of telling him that he was adopted finally paid off for me. It was my longest prank.
Kat - When you got that email, “Here are your results, here is your genome”, what was it? What were you actually looking at? Is it like a big string of A, C, Ts, and Gs? How does it kind of come to you?
Misha - So, it comes actually really nicely presented in kind of dropdown menus. So, there's four categories. You can have your traits, so that’s kind of physical characteristics like hair colour and you're lactose intolerant, if you have wet or dry earwax, kind of weird stuff like that.
Kat - Aren’t these things you know already? Like I kind of know what my earwax is like and I know that I can eat cheese.
Misha - Yeah. So, a lot of stuff you can find out by looking in a mirror. And so, that part isn’t all that revealing. And then there's your ancestry which was actually quite interesting because it kind of shows which different parts of the world you're kind of made up of. I'm very white, so that was you know, not that revealing. You know, very typical blonde. And then there's drug response which is kind of an interesting one and that’s where mine came up with some variations. So, I think one of them is like a blood pressure drug that if I take it, I don’t really react to it. So, it’s kind of good to know down the line if you're not getting the kind of response you should and then you'll be like, “Oh, maybe my genes have something to do with it.” And then come the big genetic risk ones for diseases.
Kat - I have to ask, if you're prepared to divulge, is there anything in there that made you go, “Oh crumbs!”?
Misha - No. I was so average which was – I don’t know. You don’t want anything but for the sake of my story, I almost kind of wanted there to be like an increased risk of heart disease or something in there that I could write about and talk about. But everything just turned out normal.
Kat - How did you feel about it afterwards? Were you like, “Whew! I know that now”? How did you respond to having this information?
Misha - So, it took a while to actually get up the courage to open it in the first place. I faffed around for three days after I received the email before I kind of – it’s like, “Okay, okay. I’ll open it now.” But then after, I don’t know. A lot of the stuff, you kind of know from talking to your family. If your family does have a higher risk of cancer, you kind of know because your aunt might have had it, your mom might have had it. And so for me, nothing really changed and I'm not going to change any of my health behaviours based on my results. To be honest, I pretty much forgot about it after I opened it.
Kat - Some people are concerned when they have a kind of genetic analysis that potentially, it might have any knock-on effects in the future. Is that something that crossed your mind for example, if insurance companies did change their mind about not using genetic information?
Misha - So, that was kind of an interesting bit of the piece I wrote, was actually finding out the legal implications of doing a genetic test is because right now in the UK, there is a moratorium on insurance companies and employers not being allowed to use your genetic information against you. But you don’t know how long that’s going to last, if it’s going to stick. So, it could change in the future and as like more genetic tests are being developed, it could have a scary implication. I'm not so sure about that one. That one was kind of a bit scary.
Kat - Overall, how did you find the experience? If someone else said, “Should I have this done?” What would you say to them?
Misha - Honestly, it’s interesting to just see it on paper almost in print, but it’s interesting in the same way taking personality tests are interesting. They tell you something you already know about yourself, but it’s kind of reaffirming and kind of like very introspective in a way. But other than that, it’s more of a fun thing to do than a serious thing to do.
Kat - Misha Gajewski, and you can read her account of having her genome ‘done’ and what she found on the Cancer Research UK blog. http://scienceblog.cancerresearchuk.org/2015/12/02/the-0-01-per-cent-can-over-the-counter-genetic-tests-help-you-be-healthier/