Facebook, Gatica and Eggers discussed on Life of the Law

Life of the Law


Society where not only do we have that genomic information later in life. We actually, they capture it in. This is a future society, but they capture it before you know, egging the sperm even meet. And they, you know, identify those problems that that Eggers from could be caring. I guess an egg is carrying if they pull out anything that's negative, and then you have these potentially ideal people and they're the valid 's and the invalid of the ones that are made without the genomic kind of manipulation. So I mean, the problem is is what happens, you know, on the back end of that society where you actually plan these valid people and the invalid have to borrow the, you know, a perfect valid person's genes to actually integrate into society because the in ballads are, you know excluded in so many ways. So what's the problem? Right. So think even a situation, Lee is talking about in terms of conversations with her mother. There's certainly possible positive things in terms of maybe getting more information might stimulate someone start making better lifestyle choices in ways that they wouldn't. Do so with other information, but there's also some potential downside. So we, I don't know how old your mother is. You know you can imagine situation that you know if if your mother or someone else took a test like this, who found out they has some predisposition towards Alzheimer's, would they be able to get insurance? You know how this information is not something only individuals who won, but other into the sentence insurance companies, employers may also want to have access to information or in order to make determinations about who to ensure or who to hire. And so this is were Gatica, I think, is is quite profound and it's showing how society might reorganize itself in in in light of having broader access at his information. Any in Gatica is, you know, it's it's Hollywood. So it's a, it's a quite extreme version or vision of what that's my look like. But you can imagine a lot of situations just short of Gatica that may very well come to pass as a result of having greater access to information and those outcomes aren't particularly good. I don't quite a tr-. Rust mine. Sure. To be able to take information about my genetic predispositions. I think we should be skeptical about whether or not for profit entities that insurance companies to be trustworthy with Garza, making ethical inappropriate decisions, but the Garza people's predispositions. And so I think maybe we should talk about since we're tacking that insurance companies in particular, the genetic information nondiscrimination act. So so broadly speaking, this is a lie that was passed for a couple of reasons. And one that I think is interesting and should be mentioned is after the human genome project, there was this idea that, oh my gosh, we're going to get, you know, cheaper and cheaper access to sequencing DNA everybody's gonna wanna do it because you can learn so much information from your genome which has come to pass, which has somewhat comes to pass. But one of the problems that this law addresses is that people were were a little afraid to do that. Because there's really up until this law, there was really no guarantee that that information would would not be used against you in some way. So this law was partly put in place to give people peace of mind so that they could participate in this genetic revolution. And so the lie essentially, it says that insurance companies cannot use your genetic information against you. So they can't deny you coverage for a pre existing condition that is genetically baked in and they can't raise your premiums because of that either. So you know that that's good news to a lot of people. And I think in some ways, you know that addresses directly Asakusa concern about this is what's going to happen. If I find out that, you know, I'm going to be a burden so to speak medically in the future. So this law was in on one hand away to give people peace of mind so that they could really. Take advantage of the new technologies, get sequenced without concern. But it was also actively to try and think in the future and prevent some of this discrimination and, and you know, negative consequences of the new genomic era that we're in. So is this a federal law that was, yes. So it protects people from discrimination based on a an insurance company or an employer access to your your genomic makeup. Like if this out that you have, you have a predisposition, you have a mutation that could potentially lead to something at a certain point than employer could justify saying, well, you know, I don't think we should hire them almost like getting your Facebook posts, you knows like private part of your life that pay nobody was monitoring Facebook. And now people use employers use Facebook to determine whether to hire or fire. The interesting thing is, in this case. You know, congress kind of had some foresight on that where they didn't Facebook and they were able to put alarm place, but I think it links back to the Gatica screening because you know, it turns out that in that imagined worlds, it was legal to discriminate. So it was legal illegal, no. In Gatica in Gatica it was illegal. Great line where they talk about how it's legal to discriminate based upon one's background, but then hawks says something, but nobody takes law seriously anyways, held Geno ISM. Yes, yes. So this is where the Gatica is actually quite interesting to think about the relationship between what happens with, whereas who law in the books and letting the law in action. And this is where as saying earlier, the issue around trust and distrust becomes important because what happens in terms of what's written as law itself can be quite different from how people behave in the real world and how these behaviors actually impact people's lives. And moreover, as we've seen in the past year or so issues of health and healthcare, it's a political football that is that we, as a science had shifting standards, ship expectations, shifting desires, guards, who how we want the government to act with guards issues of health and health care, and to say that gene. Itself is a permanent law that always into the future will provide the type of production that we expect is a bit of an overstatement. So while at this current moment that we're in, Gina is a useful way to provide protection to individuals and even even now, there has been some interesting critiques of that. You know, we can't necessarily be certain that what happens in the next five, ten twenty years that there won't be exceptions made or avenues created to allow companies corporations and other entities to use his information in a way that we don't find a HR thirteen thirteen if I'm not mistaken, was a Republican backed Bill that would that did not have, but what it was wasn't allowed for blower premiums for people that opted into genetic testing. Another is if you were willing to have your genome tested disclose it, then we'll say, okay, we know this is coming down the road, but we'll let you actually have a lower premium just for the fact that you're giving us information giving information to private companies. But still, I think we have to kind of while this effort in pass, we have to take a couple of into consideration. So one, the most previous efforts to change. Our healthcare laws was in abroad since an attempt to create conditions for insurance companies, so lower cost. Right? And so that attempt is not going to go away. And so that's one thing to keep in mind as we think about the future of these issues. Secondly, we are many workplaces are already have practices where they incentivize employees to participate in behaviors that allow the company to engage in certain forms of surveillance, whether it's counting footsteps or how many times you go to the gym. You know, they're all these kind of built in incentives. And while these efforts in their early. In the earliest rations are a benign, right? If you participate, you get a believe lower premiums or other types of goodies. You can imagine just goes in the future in terms of creating to allow your employer to basically survey your your behaviors your, whether or not you're healthy or not, and whether or not you are engaging types of activities and behaviors that were keep their healthcare costs low in terms of providing sheri- for you. And so this is all efforts are creating conditions for society that you know that may not look like what Gatica look in film itself. But again, we're getting closer and closer to a vision where individual behavior engine predispositions may shape the way that other entities and society might think about you and what type of burden you may place going back to twenty three and me when you do have your genome tested, where does that I'll go? Do we know who gets that? I mean, we didn't know what basic was doing with our stuff all. Of our likes and dislikes and friends, and you know purchases. So we know that there can be these almost a decade long gap in our what we're giving. And when we find out what has been done with that, do we have actual hard knowledge? What is happening to our genetic makeup when we do go to twenty three? And we when my girlfriend's daughter went and had her her tests done. I mean, it's like a hot thing to do, but do we saw was Facebook twenty years ago or fifteen ten years ago, whatever. Do we know? So yes or no. I think you know anyone who signs up for this in terms of service agreement that he signed. But you know, it's guessing Nancy. It's not always clear what the downstream consequences are when you participate in these type activities. So as you say, you know, Facebook example, many people, many friends and family. Mine have signed up for Facebook thinking that it was a rather benign way to stay in touch people. And now they're realizing that their participation and Facebook may have contributed to the outcome of twenty sixteen election in terms of how this data gets a mass and analyzed in using targeted as a way to shape people's perceptions right in again, you know, you can't always be sure about what's going to happen in the future, but this is where we need to have a broader public conversation about what does it mean to have democratic oversight of these type of new technologies to ensure that certain things should be kept off the table or at the very least that he's companies are crystal clear to there to consumers about what the overall impact might be? I think to me when I when. I'm watching all this happening and so I have a PHD in molecular and cell biology. So I I'm aware of what genes mean and what you know how that interacts with your life and with the environment and what doesn't is not. But you know. I guess I, I want to say that I do feel like to me this all kind of boils down to the fact that our -education science education is not great that you know people the public, so to speak the public's understanding, meaning just people that don't have an advanced degree like myself in this topic, don't have a great grasp on what genes are and what you know sequencing Gino means and what it doesn't mean which also means that you know, since in theory, our government is responsive to our people. It's, you know, it's people asking for certain protections that are really going to be effective in the long run because you know if we all understand what this means and and how we want it to be used and how we don't want it to be used than we can hold our government accountable. But right now, you know, there's a lot of kind of, you know, both ends of the spectrum. People are either. Other really suspicious of these companies that are Quincy your your DNA or they're not suspicious enough, and you know, kind of going out and making sure that people understand this and answering questions and talking to people I think is, is part of, you know, the end goal, you know, doing real kind of public engagement and public education so that people can understand what what they're committing to, whether agreeing to what are they

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