Listen: Andrew, China, Breast Cancer discussed on Science Friction
"Alive by had to cowl. At least if I looking at who was some of the did some of them leave diocese. Some of them didn't leave the area with a crime was committed some fame. And I would sure that the offender was a mile and so by going through that process and culling suspects are able to narrow it down to a manageable number of suspects. That information they covertly collected DNA from a suspect from something by throughout in in the garbage then match that to the crime scene. They got in. They got him decades, and that was simply because of the genealogy opportunity. That's right. So but in that process, a number of you Mata Bain dragged into that law enforcement investigation because you're six cousins Mata bane in those family trees without knowledge. So let's let some pack. A little bit further. Andrew what questions does that raise? Well, it's obviously could thing to catch the Golden State Killian on a serial killer. However, there's a few things along the lawn, and it's like with a lot of women talking about. Erin, personal information Aaron tissue Aaron DNA. It does I think it back to the issue of consent and facilitating process at the source of collection where people are consenting to some of these possibilities. Now, that's kind of hard to do we know about this now. And so we could do that. But if you think of. I guess the the more conservative medical research environment that can Saint is gone through very very carefully with samples not so much in the ancestry spice. So it gets bit had to manage. What you meaning is would I give do I thin sign away? Consent decide that. Yes. Law enforcement agencies every jurisdiction or in the jurisdiction within which leanest in Quebec content access. My daughter with consent consent means being able to make usually we think of Miami substantially informed choice about what's going to happen to us. We give information we meant to be competent to understand information. And then we're involuntary situation. We make informed decision to give sample or whatever. And that's kind of us meant to be happening with with the ancestry. Certainly generally, we want we want to consent, and we want to know to what we can seining consent can be verbal it can be implied. It can be written. It can also be. Specific that kind of some some people's I fully informed. I substantially informed you con what's going to happen. It's very specific. But it can also be extended, and certainly even in the highly regulated world of of clinical research a lot of people giving this booze to go to be used in an extended consent. So, you know, it's a complicated nuance thing in the world of highly regulated research, but with this stuff and with what you're talking about. It's not Dennis you interrogating the privacy legal and privacy issues around frenzy investigate his accessing these these ants history records onto because raises a whole range of interesting questions. Sure. One of the big issues, I think is public trust. The cornerstone of the legal system is faith in the legal system. Everyone has to believe that the legal system is fair because if we lose that faith, no legal system, we've got problems. We want to know that. If you've committed a crime, you go to jail, we want to know that if you're innocent of a crime that you don't go to jail, and it's a sign with genetic forensic genealogy. We want to know that these processes are being followed and that people are not being identified incorrectly. Now in a forensic laboratory. There are lots of regress processes, mostly employed to make sure that the denied profile is era free as much as it can be as Andrew said based prices. Naught him place with a lot of these genealogies service providers, in fact with the Golden State killer. It was really an amateur service. Jed match the company that Blake sauce base. You cannot large day. Jane, I'm up there runaway can say tirees by retirees Asia. So it's really an amateur operating. I mean, you could argue that it's just a lead that. Just providing an investigative lead to police, but there are great consequences for people who are incorrectly identified because the association even though that even though you might have your name cleared after a case being so sad with crime can sometimes take a long time to expunge from the online record. Yeah. So this is serious stuff. So now, I want to get even more seen a star. I think we if crimes to be solved most of us would would like to see it solved. Enlist. We actually committed the crime in which case, we we're just don't give you a very bad person. But let's look at state actors, and when they get involved in genomic data, so eight in China right now is actively participating in genetic surveillance. What is it? What's happening? And why should we be worried? Okay. So in one state in China. Right now, they're offering a health check DNA health took to which people are theoretically consenting, but there's a lot of peer pressure in order to participate. If you want the free chick, and they're particularly targeting, a nethon group within China that are Muslims, and they're wanting to get all of the genetic information that they can and these are people who have been reeducated in Kemp's China camps, basically. Yes, exactly, this is an ethnic group that have been extremely exploited already. And so yes, now, they're doing genomic profiling in this just P pressure. That's he this the communist party of China is applying the some people are just have being swabbed without any discussion and other people are being told if you don't agree to be swabbed will assume you have something to hide so yes, so not by any stretch of the imagination in. Informed consent as we will take it. Do we understand what's happening? Once the daughter is collected has anyone to what's happening next to those people. Well, it's a little bit of a black box. But we'd assume it's being used for policing the ultimate goal. This is the thought right now is that this population is being used as a pilot. And that the ultimate goal is that if there's any evidence left at seen that you'll be able to just instantly do the GNA and figure out who did it straight away. And then put in place eugenic plan that says this is how we will react to this population will via light they arrived there already being treated in that way. So that their rights are already violated. So they're just even more vulnerable after this. So yes, let's come to ostlund because there's an example where a commercial company is sequencing the genomes of a very large subset large percentage of the population in land for what reason. And what interesting questions of come up there. So the ice land situation is really interesting because it started a long time ago in the early two thousands early noughties basically landed people have always been interested in genealogy. It's like a big passion of theirs and three quarters of the population can show you how they tie into the rest of the population in pedigree that blows genetic counselors minds. But yes, they've always been genealogy and the government decided if you combine genealogy with health information and with genetic information, then you could potentially do a lot of good. So they passed a they pass this through the the government and the government then partnered with a private company called decode. And so everybody was consented to participate. It was what we call a blanket consent to start with which is basically can do what you like with the sample. But there was the option of disclosure of giving back results at the end, which is important because very often that isn't an option down. Track. Of course, started to find a lot of important information about these people such as jeans for breast cancer and found mutations. And those in the scientists are going, you know, we're Blige to give this information back, and the government is saying this is not what they consented for. This is not what the agreed to in the first place. I can send to because what an extraordinary process that government partners with a commercial entity to genome sequence a gripe singer the population, and I've got no other percentages. But it's enormous. Of the adult population. It's eighty ninety percent minutes like finger. And so that information is getting put where for what purpose? So the purpose is kind of towards the understanding of health because the idea originally was because the Icelandic population was a little bit more geographically, isolated that you had a little bit more of a homogeneous background genetically. And so therefore you'd be able to tease apart more easily the genes involved in diabetes susceptibility genes involved in heart disease, or the deans of so you'd be able to tease that apart with a lot more success than you would in a big message Nettie population like you'd have in the US or ustralia shared with researchers was shared with researchers. But it was a private company that partnered original had importantly, they had the monopoly on the data for the first twelve years. Magenta decode the company with what consequences so with with the consequences the unit they thought originally yet haywar off to the races. And we are price stock went up and all those type things, but actually didn't manage to produce that much interesting science and facts out of it in a short period of time, they actually went bankrupt. And then ended up getting bought up by a big biotechnology company. So this has now owned by then. Yes. And now finally they're managing to produce them. Interesting papers on on health in the ice Landik. But it's interesting questions because embedded in that data as you mentioned is really vital health information. But said, no, you know, let's tell customers that he so so it's a mixture of feelings this kind of goes into rights, basically is your is your right to know, or do you you have a right to know. And we believe in autonomous where a person has the right to make a decision. In about their health and their and their what's right for them. But on the flip side of the right to know is the right not to know. And so once you give somebody genetic information like that, they can't unlearn it. So the government was saying this is not what people have agreed to in the first place we need to actually pull of what the decode have. Now done is said give us another saliva sample on a research basis this database, and we'll go ahead and test you especially for this one mutation and B or CA two that's present in almost one percent of the population and confers a risk of breast cancer or cancer over the lifetime of about eighty percent. So these profiles identified. So they were coated that were coded. They were coded. They're all reauthenticate where you've got to come from. When you're talking about jeans, as you know, it's all real into fiber to consider it as eventually re identifiable significant that because that means that it's not actually private it. It might be attributable to back to you at some point. Now, what's laws that genetic code? So it's it can't be attributed back to the individual donated it. So that's that's what does make it very special. Sighing and it needs to be considered in a special way. And for me. It's. Turtles all the way down. It's choices all the way down and populist. Good governance, meaning -clusive participation from the population. Now ostlund I think a lot of people in our center, probably pretty much on board because awesome sight sees itself as being at the forefront of genomics, they've got down syndrome pretty well out of the society when women are choosing Borden, and so on, and and you know, they really embraced a society. That's making choices by stone. Genomic rises hall. Hall. That's what about the run. To exist in the in the community of people living with disability to exist. Thrive survive and contribute. The other. The other extreme editing, which we haven't gone to tonight, but getting into that spice, and what and the decisions that are being made about that in this season's that we need to make about and. Yes testing and so on but also about actually eighteen people's gene is they profound questions. Absolutely. When I've set interviewed people with who have been born with congenital deafness and have rich rot in live and two cultures and languages and Artistique flames, and they right to survive. And when we talk about genetics. It's very confronting die might not have enough to express all that in their lives. Had I known to our society needs to to to implement the structures. So that is good regulation. There is good law where we're needed and this not just the medical spices regulated. But this spices as well. So. Coming back to dig decode we've we should we leave. That example, this I know this genetic counselors in the audience this evening, and I think if they'd interviewed genetic counselors at the star, we always said y'all better think about the consequences because we would have seen this coming. And so therefore, it's all consent, making sure people are informed the start that they're not blindsided and think before you spit, basically is my. Speed. It's a mon- field, isn't it? It's fabulously interesting at time. They gotta get more interesting. These next between biology and rots and right to privacy. Where is it tightness? Thank you so much for being here. Let me thank Andrew crowd. And I didn't Meccan any Leo and Dennis mcniven. Thank you so much."