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The law should treat personal data like human organs – not for sale
- pseudolus 2y agohttp://archive.today/BlZeO http://archive.today/BlZeO
- elmerfud 2y agoI think there should definitely be a distinction, and that distinction needs to be enforced by law, between required data and voluntary data. A certain amount of data is required in some industries to be collected and it is required by law. There is also a data that place is voluntarily ask for but that should be made clear that this is voluntary and not required. If the business is requiring this voluntary data in order to do business with them there should be an expectation that you understand how that data will be used. If that data is misused lost or mishandled the punishments for the business should be equivalent to that of entrusting any physical property to the business that was mishandled. Businesses love to post signs that they are not liable for XYZ damage that may occur to your property. Often times this is not true. When you entrust your property to a business you have an expectation that they will provide reasonable care and security to that property and that it will be returned to you in the same condition. It doesn't matter that they have signs or contracts saying you're releasing them from liability. Negligence on their part is always a cause for liability. Unfortunately businesses have better lobbyists so this will never come to pass as law. There is another problem as well. Sometimes the government requires a certain information to be collected but only of a certain class of people. Businesses then will enforce that across everyone. The mind's numbed robots you're dealing with will simply refuse you service because you're not complying with their policy even though the law doesn't require this. I can give you an example that I had a couple weeks ago and this is the first time it's ever happened to me. When traveling to the United States covid contact tracing information is still required to be collected for people who are not citizens or lawful permanent residents and maybe one other class of people. Visitors tourists etc are required to provide contact information and a location where they're staying. This is very clear when you go look up travel information and it always lists that this information is required except for citizens etc. this time when I was flying Delta and Korean Air they asked me for this information and I told them that I do not have to provide it because I am a US citizen and you can validate that because I have a US passport. They told me it was required for them to collect it and to refer to border controls policies and the cdc's policies. So I pulled it up on my phone the government website and showed them that this is not required of US citizens. Apparently Delta and sky teams policy recently changed that they require this information of all people traveling to the United States without exception. They showed me their internal memo that did not list the exceptions but curious enough it did list the government websites that should be referred to for more information on why they're collecting it. Those same websites that list that citizens do not have to provide this. This is the kind of violation that should cause an airline to be shut down because they are refusing re-entry into someone's home country for a policy that has nothing to do with the law. Of course there is no escalation point no one to call You're simply stuck overseas refused to give a boarding pass for your flight.
- 20after4 2y ago>When traveling to the United States covid contact tracing information is still required to be collected for people who are not citizens or lawful permanent residents This seems obviously like an excuse to track where people have been rather than the stated purpose. What if you don't have a cell phone, you then are unable to return home?
- elmerfud 2y agoThey don't require that you install an application to track you via the cell phone. Some countries do require that although the countries that I've been to recently that used to require that are no longer requireing that. But they do still request that you provide a phone number and a location of where you're staying. For the United States that's what they're requiring of non-citizens phone number and address where you're staying. Of course US citizens and lawful permanent residents are exempt from that. Just like US citizens and lawful permanent residents are exempt from using facial recognition for international flights. US citizens and lawful permanent residence are exempt from a lot of border control policies. The border control people generally understand this but it's these companies that don't care and want to blindly collect the information that's the real problem. They are becoming a proxy for an overbearing government.
- nox101 2y agoin the usa, when I go to a doctor, they just have my sign 5 different forms saying I give them permission to use my data. its like cookie prompts, useless and annoying
- elmerfud 2y agoOh yes that's all thanks to the great HIPAA regulations. That was supposed to protect your information and give you better control over your information. The sad fact is it is exactly like those damn cookie prompts. You either accept them or you don't get to use the service. Part of the HIPAA regulation needs to be service cannot be denied because you do not allow the doctor you're dealing with to automatically share your information.
- constantcrying 2y ago[flagged]
- GJim 2y agoThe GDPR says my personal data is not for sale without my consent. The only people objecting to this are some US companies who haven't yet understood that unnecessary personal data is now a liability & trading it without the owners consent is not just unethical, it is illegal. As it should be. EDIT: This downvoting is getting silly. If you object to what I have written, explain why in the comments. Downvoting a well made argument simply because you disagree with it leads to groupthink and a lack of discourse. It is disappointing see this on NH. Downvoting should be reserved for text that detracts from the conversation.
- constantcrying 2y ago>The GDPR says my personal data is not for sale without my consent. Which is something totally different from saying that it is never for sale. It is also totally different from saying that a company can never make use of that data. The analogy to human organs is just ridiculous. The GDPR definitely doesn't treat your data like they were your organs.
- GJim 2y ago> Which is something totally different from saying that it is never for sale. I never said otherwise. If that was your takeaway from my comment, I'd politely question your reading comprehension!
- constantcrying 2y ago>I never said otherwise. Indeed, but I also never said otherwise.
- pbhjpbhj 2y agoMeta: >Downvoting a well made argument simply because you disagree with it leads to groupthink and a lack of discourse. Agreed. I railed against this for several years, then the HN operators (pg himself IIRC) said downvoting for disagreement was right. I absolutely agree with you, but the people running the site encourage using downvoting to show disagreement.
- bpodgursky 2y agoTens of thousands of people die each year because compatible donors cannot be compensated for bone marrow or blood donations.
- pitaj 2y agoMy first thought as well. There's a strong argument against prohibition of the sale of human organs.
- mschuster91 2y agoThere's also strong arguments for prohibiting the sale of human organs, chiefly that you want to avoid pressure against poor people to give up their kidneys to survive. Even for something as simple as blood donations, once money enters the equation, everything changes incentive-wise... you don't want people to lie on donation forms about how long ago their last donation was just to make money (and then end up being carried off to the ER because they gave up way too much blood). The other debate that inevitably crops up is ethics, similar to the debate around surrogate pregnancies, we are already seeing women from piss poor countries taking up one of the most serious health challenges there is for rich Western women - women that just don't want to risk their bodies getting fucked up permanently by pregnancy.
- GJim 2y agoNot in Blighty. We would regard being paid to donate blood (!) as rather distasteful. We do not have a lack of donors and I do not know a single heathy person who hasn't voluntarily donated blood at some time in their life. NHS blood donation teams regularly set up temporary donation centres in shopping precincts, library's, universities and workplaces, so you can pop in and donate blood whenever is convenient for you. The only payment you get is a cup an tea and a biscuit afterwards. And the feeling you may have helped saved a life. I'll let somebody else make the comments about medical capitalism in the USA.
- jdietrich 2y agoInterestingly enough, there is an internal market for blood products - NHS Blood and Transplant sells blood products to NHS hospitals. The current contract price for a unit of standard red cells is £158.18. https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/29949/price_list_bc_nhs_contract_cost-per-item_2023-24.pdf https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/2...
- swayvil 2y agoBut ownership doesn't really fit data. I know that we want to control it but it isn't exactly property. Find a new metaphor?
- cookingrobot 2y agoHow about copyright? Every piece of data you create could be considered a copyrighted act, owned by you.
- pbhjpbhj 2y agoCopyright doesn't cover facts
- muzani 2y ago[flagged]
- JohnFen 2y ago> Your data isn't used against you My data is very often used against me. But even if it weren't, I still think that I should be able to live my life largely free of being spied on. It is my data, after all.
- next_xibalba 2y agoHow is your data used against you?
- abeppu 2y agoA recent creepy example in the news has been cars collecting data about drivers, which was bought by insurers, who used it to change rate information. Drivers were typically unaware that they had consented for any kind of data collection, let alone it being sold to their insurers. In one piece I saw, IIRC, a car sales person said that they commonly accepted some fine print terms on behalf of car purchasers to speed along the process.
- JohnFen 2y agoIt's used against me in many ways, but the most common way is its use for targeted advertising and other similar marketing purposes. My attitude isn't that personal data should be off-limits in some absolute sense, but its collection and use should be prohibited in the absence of meaningful informed consent.
- mihaic 2y agoI hate it that simplistic naratives have won in public discourse, and we're stuck with overuse of analogies. Data is not like anything. It's its own thing that shouldn't be sold or abused like it is right now, and nobody will ever get it as long as they need to use analogies to understand it.
- deleted 2y ago[deleted]
- pbhjpbhj 2y agoThe analogue pertains to government treatment, not the data itself. You need analogies for people who are less technically savvy, like most legislators.
- mihaic 2y ago> You need analogies for people who are less technically savvy, like most legislators. You don't need to have a PhD in computer science to understand what data is and what can be done by aggregating and reselling it. You just need some intelligence, curiosity and honest interest in the issue. If you pass laws on technology, maybe spend 30 hours and learn basic Python. When people are treated as not able to understand a complex argument, you'll get a population that can't even digest most basic arguments.
- jampekka 2y agoThe analogy is not about technical or theoretical understanding of data. It's about how (personally identifiable) data should or should not be allowed to be used societally. Analogically its the same as not being allowed to sell your vote.
- deleted 2y ago[deleted]
- jampekka 2y agoThe analogy is that there are things that can't be sold and bought. Which is for many people starting to be an incomprehensible concept because of the totalitarian market ideology of our time.
- thayne 2y agoBut organs are sold after they are harvested. They are sold to hospitals that need them, then again to patients that need them. They can't be sold for profit, but they are still sold.
- nostromo 2y agoYes, everyone gets paid except for the organ donor. It's a bad system. To hold it up as some sort of exemplar isn't smart.
- jampekka 2y agoAre the hospitals allowed to charge for the organs somewhere? In most e.g. European and other public healthcare countries you can't really even buy the operation, let alone the organ. But yes, having private organizations as middlemen is not good. That's why my organs will not be put to use when I die.
- thayne 2y ago> Are the hospitals allowed to charge for the organs somewhere? Yes. That is the case in the US at least.
- Havoc 2y agoThe data isn’t the problem. Big Techs methods of monetising it is.
- rcpt 2y agoYou should be able to sell your organs
- pbhjpbhj 2y agoAnd have them forcibly harvested, without payment, whilst you're not looking if you didn't read the small print when browsing a website! /s
- treyd 2y agoYes, if you're poor and don't have the credit to start your own business, just sell your spare kidney! You only need one, keeping both your kidneys is for people who like staying poor.
- throwawa14223 2y agoAfter reading the article it seems to be on the right track. Banning markets for user data seems like a great first step.
- abeppu 2y agoIs banning "sale" the right way to frame this though? What is a "sale"? E.g. I know that zoos aren't supposed to buy or sell animals -- but they do exchange them. And certainly among tech companies, "data partnerships" are already common, where company A gives data to company B and B does something for A distinct from just paying them. I think we need to expand regulations around consent of data subjects. Today we sometimes argue over whether a data subject has meaningfully given consent for a specific use of their data for something other than the core product that generated it. Once that consent is given, maybe the data subject has some right to be forgotten in principle, but understanding how their data is actually being used in order to withdraw consent is really hard and messy. What if every use of a customer's data which is presented back to them (e.g. from a marketing email from a firm you've never directly interacted with to targeted ad you see in an app or on web page) has to give you a link a report showing what data sources contributed to it, and which parties controlled it, along with "revoke consent" links?
- jampekka 2y agoIn EU under the GDPR we have the "consent" thing. It has failed miserably because of bad enforcement and corporate shenanigans. Per polling around 3% of people want to give a consent for adtech tracking but majority click a consent button against their consent. There's also a right to get the data they have on you and to who it was sold and to revoke the "consent". It's practically useless because of how it gets maliciously implemented.
- abeppu 2y agoRight, so you're not aware of all the data controllers that have your data to whom you should send a request to delete your data, so currently it's impractical to exercise your rights. But presumably you're aware when you're shown an ad ... so requiring the application which uses the data to present info about the data provenance and controllers would give data subjects a better opportunity to withdraw consent from those uses. But I suppose you might not know if your data was used against you in the form of not offering you a better loan rate which your neighbor was offered, for example.
- cess11 2y agoBlood donations might be a better example to use as a basis for reasoning about the horrid information commerce we've given existence to.
- Am4TIfIsER0ppos 2y agoTo stretch the analogy even more: Do you mean it belongs to the state when we're dead and they're free to extract it from your warm corpse, scratch that, not-even-corpse-yet body and give it to the least deserving?
- GoodJokes 2y ago[dead]
- leobg 2y agoAt the same time, there’s a Show HN on the front page today with an app that lets you buy people’s email addresses, packaged as an innovation in AI powered search.