Demystifying Genetics with Jane Tiller

Demystifying Genetics with Jane Tiller This podcast can be accessed via Apple iTunes Podcasts at https://itunes.apple.com/au/podcast/demystifying-genetics/id1387090904 or on Buzzsprout at http://demystifying-genetics.buzzsprout.com/ I was lucky enough to record this podcast with Jane Tiller in the studio in Melbourne. The photo is a selfie of us outside the studio. Jane and I discussed direct to consumer testing, life insurance and genetics and the tristate killer. Listen in for an interesting conversation about genetics and ethics. One of the topics we discussed was genetic sexual attraction. Wikipedia has an interesting page on this topic https://en.wikipedia.org/wiki/Genetic_sexual_attraction Jane can be found at https://www.linkedin.com/in/jane-tiller-13675728/ 

Transcript

Matt Burgess (00:00):

Hello and welcome to Demystifying Genetics. My name's Matt Burgess and I am a genetic counselor in Melbourne, Australia. Today I am demystifying genetics with Jane Tiller, genetic Counselor. Jane has a bachelor of science and a bachelor of laws with honors from Monash University. And recently graduated from the University of Melbourne with the Masters of Genetic Counseling. So today with Jane, we're going to cover insurance and how life insurance and genetics can play a part together. We also will cover data sharing and direct to consumer testing. I'm very excited to have Jane in the studio with me this morning and I think that we're going to have a great conversation about lots of different and interesting genetic things. But yeah, welcome Jane.

Jane Tiller (00:54):

Thanks, Matt.

Matt Burgess (00:56):

So you are, you are a lawyer? Yes. And you are a genetic counselor? Yes. And are you the only lawyer slash genetic counselor kind of working, doing both jobs at the same time that you know of or?

Jane Tiller (01:09):

The only one that I know of. There are a few lawyer genetic counselors out there. One other than I know of who is no longer doing law and the only one that I know of that's sort of trying to straddle both at the moment.

Matt Burgess (01:20):

Yeah. And congratulations. I think that's fantastic. I, I don't know if this is true or not, but I kind of get the impression that a lot of people that go into law sort of do it with like business or economics or arts. Yes. But I think it's really important that we have lawmakers or people working in sort of the legal area that have a science background and that's what you have. So I think that's a, a really fascinating sort of combination. You also have a really interesting genetic counseling job. Yes. That was one of the more interesting jobs that I've seen advertised in a long while. Just wondering if you can tell me a little bit about that.

Jane Tiller (02:01):

Yeah, I was really excited for this job. Like you said, I, you know, with a law background and having done genetic counseling, I was keen to keep my toes in lots of different areas and wanted to do a bit of genetic counseling but didn't want to, I guess stop doing all the other things I was doing. And so I was looking for a role that was part-time that was a bit interesting doing something a bit different. And this role is really exciting. I'm just a month in now. And we're looking at genetic testing in the Jewish community, particularly looking at BRCA mutations. So the gene that causes breast ovarian cancer primarily which is really high proportion in the Jewish community compared to the general population. Yeah. So we're looking at screening in that population to, to kind of test a large number of the population and also to do some research around that as well.

Matt Burgess (02:50):

Yeah, that's fantastic. So you are based in Melbourne and I understand that you are working with a similar team that are sort of working alongside you in Sydney, is that

Jane Tiller (03:00):

Right? That's right. So we're doing a thousand people in Melbourne and a thousand people in Sydney initially. We've just sort of started thinking about recruitment and things like that. So the program isn't underway yet, but we'll be doing about 2000 people across Melbourne and Sydney to

Matt Burgess (03:14):

Start with. Yeah. that's great. I like that you are sort of combining sort of clinical, like talking to real people and sort of explaining genetics, but then there's that research component as well. I think as I go along in my career, I'm, I'm kind of realizing how important that research component is.

Jane Tiller (03:35):

Absolutely. Yeah. And it's something that when I thought about research a few years ago, I thought, oh, that's not that interesting. Cause I thought of just, you know, sitting reading things and, you know, thinking about legal research. I guess it wasn't that exciting. But the more you do in genetics and emerging technologies, the more you realize that every project you do, it's so important to measure things around it, to find out how successful it is to find out what people are thinking about. And if you can do that in the context of your clinical work, it just makes everything so much more valuable.

Matt Burgess (04:05):

Yeah, yeah. As I'm approaching 40, I, you know, I don't know if it's sort of me sort of freaking out a little bit about my age, but I sort of am reflecting on myself and my practice and I remember when I graduated I was like, oh, I'm not interested in research whatsoever. Like, I just wanna do clinical. It's sort of as I'm going along Yeah. I'm like, oh, no, research is really important. Yeah.

Jane Tiller (04:29):

Yeah, I'm exactly the same and I've suddenly realized, oh, research is actually really interesting if it's actually grounded in something that's happening and moving and I guess progressing. Yes. Yeah.

Matt Burgess (04:40):

Excellent. So you are sort of one of the experts in Australia in genetics and insurance. Yep. Just wondering if you, we can start the conversation sort of around that. I know at work when I'm sort of meeting with patients when we get to sort of the, the consent form part of the process. So like, we'll I'll talk about someone's family history and why they've been referred and and, and sort of talk about, you know, if they've had a diagnosis themselves. And we talk about testing and if people go on to have testing, we go through a consent form and then there's like a little part on the consent form that talks about insurance and Yep. It's usually at that point that we stop and have a, an insurance chat. But yeah, so I don't know if you just wanna start talking about insurance or Yeah. And we'll just see where we go, but

Jane Tiller (05:36):

Absolutely. So it's, you know, like you said, I have sort of become somehow in the last two years sort of one of the experts in the area, mainly cuz I had a real interest in it and spent a lot of time looking into it. Became concerned about two years ago when I was doing a project as part of my masters to see what the situation was in Australia. So health insurance in Australia isn't affected at all and when you look at genetic testing, but life insurance can be, so people applying for life insurance if they ask have to disclose if they've had genetic tests and those results can be used to discriminate by an insurer, so they might have their premium increased they might be denied life insurance altogether based on the risk that the insurer sees in those test results.

(06:22):

Yeah. So I became really concerned about this and I looked into what was happening across the rest of the world, what had happened in Australia to date and found out that actually Australia was quite behind other countries. You know, Canada has just passed legislation, which they've been working on for 15 years. They've been trying to get it up. And the UK have had a, a ban, so moratorium agreed between the government and the insurance industry since 2001. A lot of Europe is under a convention that basically says they have to prevent it. Yeah. So Europe has banded in or restricted it in all sorts of different ways and Australia looked at it way back in 2001 and then haven't really looked at it again. So we're lagging. And it's a real critical issue for Australians.

Matt Burgess (07:09):

Okay. So let's break that down a little bit. Yeah. So I might go back to health insurance. Yes. So for, for people in Australia, maybe younger people that don't have private health insurance mm-hmm. <Affirmative>, when you apply for life for health insurance, is it Correct, they don't ask you about genetics?

Jane Tiller (07:27):

That's right. Yeah. So there's, there's a piece of legislation in Australia that specifically protects health insurance from what's called risk rating. So insurers look at the different risks that you bring as a person asking for insurance, and if you bring high risks under risk rated insurance, they can charge you more. Yeah. Under health insurance the government mandates that it's community rated, so they can't charge you more for your health insurance if you're a smoker. They can't charge you more if you tell them that you're going to take recreational drugs. You know, there's all sorts of things that would increase your risks of health significantly. Yeah. Because health insurance is community rated they can't take any of those things into account. Okay. And so that includes genetic test

Matt Burgess (08:13):

Results. Okay. So they do take into account your a is that like the only thing Yes. That sort of Yes.

Jane Tiller (08:18):

It's age stratified.

Matt Burgess (08:19):

Yeah. Excellent. Okay. So health insurance isn't sort of affected, but it's life insurance. So that's like death cover. Yes. Income protection Yes. Or trauma or

Jane Tiller (08:31):

Disability insurance. Yes. Yeah. Even travel insurance is risk rated. And so even though we haven't seen many cases of this happening, a a travel insurer can ask the genetic test results. Some people who've who have these BRCA mutations that increase your risk of developing breast cancer and ovarian cancer have been denied travel insurance by an insurer who for some reason thinks that's a reason not to get travel insurance. Yeah. So

Matt Burgess (08:59):

I mean, as a lay, well, I don't know if I am a lay person or not <laugh>, you know, I'm not a, an expert in insurance, but that sounds ridiculous. Like if you're going on a month's holiday to Europe or something and you are perfectly fired and healthy and, but you know that you've got a, a mutation that maybe increases your risk of bowel cancer or breast cancer. Like I don't see how that's even linked. Like

Jane Tiller (09:22):

Absolutely. However, insurers, once they have a piece of information want to use it if it, if it's something that they think affects their risk and a lot of insurers see genetics or see genetic test results and just panic.

Matt Burgess (09:35):

Okay. So does that mean that maybe insurance companies should start employing genetic counselors to kind of help with people that are applying? Or like how, where do insurance companies get their scientific knowledge from?

Jane Tiller (09:51):

Yeah, so insurers have actuaries who kind of set up their underwriting rules. And often they'll have a chief medical officer and their genetic testing policy says that if they need more information about genetics or about anything in their policies, that they should go and seek that information. As far as I know, most of them don't. And so, yes, they need better genetics knowledge. They need better understanding of risk estimates when they're using this information. They need to understand issues like penetrance which I know you know this, but for everyone listening penetrance is about if you have a gene change that can cause a disease, for example how likely is it that that gene change causes the disease? So just cuz you have a BRCA mutation doesn't mean you'll get breast cancer. And so how likely you are to get breast cancer is the penetrance of that gene.

(10:40):

Insurers often don't understand those things Often we don't understand as scientists, you know, the people researching genes don't understand the penetrance of certain genes. And so insurers certainly can't. One of the things about that is that I think insurers shouldn't be using that information if it's not well understood enough. If it's not scientifically accurate enough, then they shouldn't be using it yet. Yeah. and more to the point a lot of the advocacy work that we've been doing is that we say insurers should be banned from using this information at all. Yeah. so at the moment they're using it, if they're going to use it, they should certainly have better information about it. But what we're asking the government to do is to ban insurers from using genetic test results for life insurance like they have in a number of other countries.

Matt Burgess (11:26):

And do you th where are we up to with that sort of argument or, you know, like, have, have the government said that they'll sit down and talk about this or,

Jane Tiller (11:36):

So we're not there yet, but we have made some progress. There was a parliamentary inquiry into the whole life insurance industry that was going on for the last year and a half and we made submissions to that inquiry and said, Hey, while you're looking at the life insurance industry, what about genetics? And got to go to Canberra and talk to them a few times and really got the issue on the agenda for that inquiry. So the report for that inquiry came out in March and it includes a whole chapter on genetic testing and life insurance goes through a lot of the concerns that we had and ultimately recommends that there be a ban in Australia, at least in the short to medium term completely on the use of genetic test results for life insurance. There's one caveat to that, and that is that if you have a family history of breast cancer, for example, and it's found to be due to a breast cancer mutation and you can show that you don't have that particular family mutation, that means that an insurer should be able to take that into account in saying your family history doesn't affect your breast cancer risk.

(12:39):

 And so that's, you know, we call that using negative test results to counter family history. And so in the UK and Canada, there are provisions for that to be used. And we say in Australia, you should be able to use that negative test result to say, Hey, insurer, don't look at my family history cuz I don't have that gene. But that's the only exception.

Matt Burgess (12:58):

I just assumed that that was happening. You know, like I tell my patients, if you test negative, then you can show the insurance company and maybe once or twice a year I'll, I'll get a request from the insurance company for a negative test result. And I have kind of just assumed that that person has gotten cover after that. I haven't heard anything to the contrary, but like I Is that sort of what you are hearing is happening in?

Jane Tiller (13:26):

Yeah, it does happen. I guess they're using all genetic test results at the moment, so they're using negative ones and they're using positive ones. But we're saying that they should not be able to use positive ones, but that negative test results should still be able to be used. Yeah. Because it does give more information. Now that parliamentary inquiry came out in March and as yet the law hasn't changed. The industry policy hasn't changed. We are trying to ask the government to address this urgently. But a, a parliamentary inquiry just makes recommendations to the government and then the government has to respond and do something to make it actually happen.

Matt Burgess (14:07):

Okay. So, and it's quite nuanced, isn't it? Like there are conditions that if you know that you have it, you can actively do something to reduce your risk of developing it and maybe even so much that your risk is then less than that of the general population. Yes. And so if people can show that they are at risk, but then they're doing everything they can to reduce that risk, then logically they should be able to get cover like everybody else. But I, I don't know if that's actually happening.

Jane Tiller (14:41):

Absolutely. So for example, Lynch syndrome, which is there are a number of gene changes that make you more likely to get bowel cancer and some other cancers. And your risk is quite high if you have a lynch syndrome mutation. But if you have re regular colonoscopies and you go in for screening you can catch the polyps early that develop into bowel cancer and your risk of developing bowel cancer is significantly less. And it is at or below the risk that we all have in the population of developing bowel cancer. So in theory, people who have one of those mutations who are undergoing all of the right screening and surveillance should be able to get life insurance at the same level of as everyone else in the population. However, often it doesn't happen. There are requirements in the legislation that say that insurers must take into account risk reducing strategies and surveillance. However, there isn't a lot of transparency around that and there isn't really any oversight by the government. So it's a self-regulated industry, which is one of the concerns we have. And so if they're not doing what they should do, there's not much that most people can do about that without taking significant steps. For example taking it to the Human Rights Commission or something like that.

Matt Burgess (16:00):

Yeah. And because I think with, there was a, a gentleman in Australia who did that with Lynch syndrome Yes. Recently, yes. And it sounded like a mammoth kind of effort, but it, it sort of paid off for him. It was a good result. And you know, like maybe it's a bit naive, but I was kind of thinking, oh, that's a good precedent. Like that must be a good thing for other people in the community, like is

Jane Tiller (16:23):

Not to be argumentative, but I think it's a terrible precedent. And I know the one you're talking about, he was on the seven 30 report Yes. Recently. So he was part of a paper that was published by Louise Kio and Mark Osky Yeah. Who do a lot of work in this space. And he actually was denied insurance several times by several different insurers. He was very well educated had a, a science background as I understand it, and understood this idea that doing the surveillance decreased his risk to population risk and sent a bunch of information to the insurer when he made this application to say, look, I'm undergoing this screening. Here are the scientific papers that back up the fact that this is my risk. He got letters from well-known geneticists to support his application and he still was told by the insurer, no, no, no we won't give you insurance for cancer.

(17:19):

He then tried to ask them for written reasons, which is something that insurers are supposed to do, but again, there's no mechanism to force them to do it. And so they just ignored his request. He then tried to appeal the decision unsuccessfully, and then he went to the Human Rights Commission and put in a complaint. And so although eventually he did get his level of cover that final insurer, when he sent them the Human Rights Commission complaint changed their mind. But the cynic in me says, out of convenience, not out of doing the right thing. Okay. Okay. Know, they, they were threatened by the Human Rights Commission application and so decided to reverse their decision. But for the average person to have to go through all of those steps, to have that wherewithal, to have the resources to follow those steps to get that outcome I think is a shame. Yeah. And that, that's not what the average Aussie who maybe has had a, an adverse genetic test result should have to do in order to have insurer do what they're required to do anyway under the current law. Yes. So some people say, look, that's a good outcome. But I actually say that's good for him, but actually really bad that he had to go through that many steps and that much hassle just to require an insurer to do what they're supposed to

Matt Burgess (18:37):

Do really good, but not good enough. <Laugh>. Yeah.

(18:41):

I, so changing topics a little bit. Mm-Hmm. I thought now if we could talk about direct to consumer testing. Yeah. I know that that is another area that you are really sort of passionate about. Maybe you'll be able to explain this a bit better than I can. I feel like I'm not very articulate in explaining, you know, when you go to a hospital or a medical setting mm-hmm. And you have a hospital grade genetic test mm-hmm. It's using dna, but it's, it's in a lab that is regulated and there are rules. Mm-Hmm. And there are, you know, there are things that govern what can happen. Yep. And then there are other companies that kind of do this recreational kind of fun testing and it's not medical at all mm-hmm. <Affirmative>. But I think because people, people think that because they're using dna, it's like the same Yes. Sort of level. Yes. And I just have a really hard time excited <laugh>. They're completely different and no, we shouldn't be comparing, even though they're both genetic testing. Yeah. We shouldn't be comparing those. Yeah.

Jane Tiller (19:52):

And I think what I would say is, like you say, clinical testing, which is how I describe what you're saying about the, the hospital grade testing. Clinical testing is subject to very stringent regulations in Australia. So if you go to a genetics clinic and you have a test for, you know, BRCA or Lynch, those genes that we've been talking about, or a host of other genes, you know, that the lab that is done in is NADA accredited. So that's the accreditation agency in Australia. You know, that it will be interpreted by scientists who are very experienced and expert, you know, that they'll look carefully at that genetic information to interpret what it means. And as we all know, genetic technology is moving much faster than knowledge in genetics. And so we really do have to interpret carefully the the volume of information that comes out of the genetic testing.

(20:45):

Now, however, if you go online and you click around and you find a website that offers some kind of interesting testing, you don't know any of those things. You don't know what the lab is looking at, you don't know how well the quality control is of the results that are coming out. So you don't know whether the results are actually true or real. Second of all, even if the results are true or real, you don't know who is looking at them and interpreting them and telling you what they mean. You don't know where they're getting their information from. And so there really is that question around this direct to consumer testing around what information you're getting, how reliable it is, how reliable the interpretation is and then what you do with that information. And so often there's no genetic counseling around that to help people put that in context and decide what to do with it and understand what their options are. Often people will then take it to a GP to say, what does this mean? And a GP often doesn't know because, you know, they're often not trained highly in genetics. So there are a lot of concerns.

Matt Burgess (21:52):

Yeah. I, I'm following quite a few American genetic counselors on Twitter, and I know sort of the Twitter sphere in this area has kind of gone crazy in the last couple of months. And one of the sort of themes are people ordering their own genetic tests online, finding out that they've got a mutation or a change in a gene that predisposes them to something quite serious like cancer or Alzheimer's or Huntington disease. And then when they get it checked by an accredited lab, they actually don't have that mutation. Yeah. And, you know, that's, that's crazy. Like that is, that is so important that you know, it, it just shows the value of genetic counseling, I think.

Jane Tiller (22:38):

And there was a paper that came out relatively recently that did a cross section of these direct to consumer tests that predisposed to disease. And they confirmed those tests in a, in a accredited setting, and up to 40% of them were actually false positives. So that's, you know, close to half of these people getting serious risk results that weren't even real. Yeah. and that creates a lot of distress. People can go off and start taking interventions or preventative measures that they really don't need to take on the basis of those results. And it's, it's a bit of a shame.

Matt Burgess (23:14):

Yeah. And because I, I guess the clinical labs out there that their whole reason that they are there is to provide clinical testing. And I heard that there are some of these recreational genetic testing companies and their whole reason for being is to sell people's DNA samples on to a third party. So even though they're saying that they're offering some tests that's really just an inducement or, you know, to, to get dna, I'm like, I kind of thought, oh, wow. Like, I'd never even thought of that. Like

Jane Tiller (23:48):

Yeah. So that leads into some of the, I guess, da DNA privacy issues that we've been looking at. And it's definitely true that big DNA data banks are really valuable for research and for all sorts of other activities. And big companies like Ancestry and 20 23andme are amassing huge databases, millions and millions of samples. And they will give access to researchers for that. Some of them sell your data to pharmaceutical companies or other people who are interested in getting them. And certainly that amassing of massive amounts of data is more profitable than selling you the test. Yeah. So, like you say selling you the test is just the reason to get you to spit in the tube and consent and sign away your rights to your DNA data. And we really urge people to be aware of those things to think about the privacy, to think about what might happen to their data, read the terms and conditions and to think about where it might be going because it's a bit

Matt Burgess (24:54):

Worrying. Yeah. Yeah. So I did an ancestry test mm-hmm. <Affirmative>, and, you know, I guess I was a little bit skeptical when I did it, but I just thought, you know, this will be fun and I'll, I'll see sort of what comes out. And it was with a, a, one of the large American ancestry testing companies. And what this company, like some of the other companies do is they can match you up with relatives that you know, may have also done the test mm-hmm. <Affirmative>. So when somebody has a genetic test, they're looking at their genetic makeup, and then if a close relative also has a genetic test, we can see, or the, the people in the lab can see that they're related because they share sort of common genetic information. So what these ancestry testing companies are doing is they're able to see if they've got any closely linked people, which is kind of an interesting topic.

(25:55):

And I kind of, you know, maybe like a lot of people didn't see sort of the implications straight away. And when I did the test I, it came back saying that I had a, a third or a fourth cousin in Sydney mm-hmm. <Affirmative>. So I was able to Google her and track her down, and I found her email address and, you know, someone I had never met, I, I didn't know, but I, I just wanted to know if she had also done the test. Like was was there any sort of legitimacy in, in the fact that we were related? She was very skeptical and was like, who is this guy contacted me out of the blue saying that we're related <laugh>. Because I'm a genetic counselor or because I work in genetics, I could tell that we were related through our mothers, like it was maternal d n a.

(26:46):

Yes. So that is d n a that is passed from mother to their children. So I could see that maybe my mom's mom's mom and her mom's mom's mom were related or the same person. And so when I said that, and then I said the part of country New South Wales where my maternal family's from, she kind of thought, oh, okay, maybe this guy is telling the truth. Not that we had like a big sort of lovely reunion or, you know, family catch up or anything, but I guess I'm, I'm sort of saying this story because there's an interesting case that happened in America that a lot of people are talking about and Yep. I'd really like to sort of talk about that. Yeah. And so this is the Golden State Killer. Yes. I'm sure you are all over it. Yes. I'll see. Can you sort of explain what happened and Yeah. Then we can sort of talk about some of the issues with this case.

Jane Tiller (27:43):

Yeah. So what happened with the Golden State Killer case, it was a cold case from the US from back in the fifties and sixties. This guy had been a serial rapist and murderer really horrific crimes. And they hadn't been able to kind of get any leads on it for years and years and years had sort of become cold. And then recently they were able to access d n a data from a relative of the person who became the prime suspect through a genealogy database. So

Matt Burgess (28:16):

With that person's permission,

Jane Tiller (28:18):

No. No. So how it worked was they had DNA samples from the Golden State Killer, but they'd never been able to match them through any state databases or criminal databases. So, so they had this DNA sample, they had rape kits and they uploaded that data onto this site called Jed Match. So they didn't use Ancestry or any of those testing companies, but they used this open source free site called Jed Match. And the way GEDMatch works is you upload your raw data. So if you do an ancestry test, for example, you can ask for your raw data download, you upload that onto Jed Match, and they do exactly what you were describing earlier, which is they look at your DNA and they see whether there are similarities that indicate that people might be related. And when you upload it and someone else uploads it and you're similar, they tell you that there's a match and you can get in contact with each other. Now because it's a free open source matching platform, it doesn't have very strict privacy. It doesn't kind of protect each person's individual, individual data because it's supposed to be there to allow people to match together. And so, which

Matt Burgess (29:29):

Sounds like a good idea, which,

Jane Tiller (29:31):

Which is a great idea. Yeah. and I'll tell you in a moment about ways that it's been used in a really good way, but in this case the investigators uploaded that created a fake profile and they uploaded this data, they found a close or relatively close match, and they tracked down that match, and they were able then to narrow down their search in terms of someone who would be related to that family tree to find the suspect. And so when they did that, they were able to then get a direct DNA sample from the person who became the prime suspect and basically catch him, which is amazing. And it's one of those cases that I think a lot of people feel okay with because there was such horrific crimes involved. And it was such a, a relief to be able to find the person who did these things. But it did raise a lot of concerns around D n a privacy around law enforcement accessing this kind of data and around using relatives data to try and track people down because like you say, we share d n a with our relatives. And so these kind of things implicate not only ourselves, but also people who are genetically related to us.

Matt Burgess (30:42):

And I think that that is a, a really key point in genetics. Like when people think about genetics, we, we think of things running through the family and you know, we don't just think of the individual, we think of the family, but that's sort of like the only area in medicine where that happens. Like with other areas of medicine, it really is just the person in front of us. You know, maybe with some infectious diseases that might be the people that are in close proximity to that person, but with genetics, it, it really is everybody else in the family. So I think that case kind of brings up issues of consent and, you know, like if I give consent to have a test, am I giving consent just for myself or, you know, I'm really then, you know, giving consent on behalf of my, my siblings and my, my parents. And, and where does it stop? And, you know, one could argue that, you know, you've, you've captured a really horrible person that really shouldn't be out there free. But yeah, I don't know, like, you know, is this dodgy, like where what's happening?

Jane Tiller (31:52):

And the interesting thing I thought about when this all came out from an sort of ethical point of view is would we all feel happy about it if it was an 18 year old kid who stole some chewing gum from the supermarket? You know, would we feel like that warranted this breach of genetic privacy? Or are we only okay with it because it was such a horrific crime and such a significant thing to catch them? And I think probably a lot of people wouldn't be okay if it was just petty crime, for example, that we were using it for. I do think it's the kind of thing that it's going to keep happening. I mean, law enforcement has been trying to access d n a samples from various sources since the nineties. Yeah. You know, since we had genetic technology that we could use that for.

(32:37):

 And so I read a few papers that have come in the last few weeks talking about the, the Golden State Killer case that have said, look, we, we all appreciate governments are going to use this data, but it should be done in a really transparent way. It should be sort of accessible on a case by case basis rather than just being, you know, carte blanche. Yes. access. But what I was going to say as well under this JED Match site is it's had some really interesting other implications. A guy that I work with actually uploaded his d n A onto one of these sites and has found some genetic relatives. But he's also found out that he is related to a lot of other people who are all the direct ancestors of a fertility doctor who in the fifties Oh

Matt Burgess (33:27):

Wow.

Jane Tiller (33:28):

In the fifties fathered many, many children through using his own sperm in his fertility clinic. Yes. Unbeknownst to many of the women that he was treating for fertility. And there are a number of, they're called donor siblings, they call them Lings who have all been leaped through this same donor father. And many of these people haven't known that they were donor conceived until recently. And so hundreds of, I guess, relatives are all coming out of the woodwork and realizing that they're part of this massive donor family which is having big implications for their sense of identity and genetics and all of those type of things.

Matt Burgess (34:06):

Yeah. Because we know of this sort of this term you know, what is it like familial sexual attraction or when people I don't think

Jane Tiller (34:19):

I've heard of that one, but I'll have to look that up. Are you talking about the EDUs complex? No,

Matt Burgess (34:25):

No, no, no. It is not familial something sexual attraction where the people that have come up with this theory are saying that when closely related people aren't brought up together. They can have a strong sexual attraction to each other when they meet. Right. And that just kind of made me think of this case where, you know, there are hundreds of these kids that are all half brothers and sisters with each other that they wouldn't know, and that would be a real issue if they're having children together. 

Jane Tiller (35:01):

Well, they're still looking into it. It, you know, there's been a documentary about it and a number of articles have been written about it. And I think a lot of research groups will be looking to research these populations, but they have wondered whether there's been accidental incest between, because especially when this was first happening, they may have been geographically close to each other in this community. And we don't know yet whether that's happened, but it's, it's possible. And my colleague actually had to quickly make sure that he wasn't related to his current girlfriend when he found.

Matt Burgess (35:37):

Wow. Well, unfortunately, I think we need to wrap it up. I have had so much fun chatting to you, Jane. It's been great. I think, I mean, I could keep talking for hours. Yeah. but I think that yeah, we need to yeah, finish the conversation there. Maybe you can come back another time and we can talk about other interesting things in genetics. But absolutely. I just wanna wish you all the best with your new genetic counseling role. And yeah, thank you for coming along. Thanks, Matt. Okay then. Bye bye. As always, I'm going to put a fact sheet online, so if you have any questions about what Jane and I have spoken about today, please look at my website. That's insight genomic are.com au. And the fact sheets are@insightgenomicuh.com au slash podcasts.