为什么遗传隐私注定要失败
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我正在与一些朋友进行讨论，他们都表示有兴趣进行基因分型或已经将他们的信息 进入公共领域。他们是一群相当精明的人（六人中的一半已被基因分型），但其中一人表达了常识性的反对意见，即“有人可以在未来找到一些东西”。换句话说，一个非常令人毛骨悚然的跟踪者可能会继续运行您的数据 蛋白酶。想象一下，你是一个非常奇怪的人，你有一群你想了解的人的基因型，你设计了一个程序，它可以搜索学术文献，并在数据库中的个人弹出大量信息时不断通知你。效应突变。我不知道为什么有人会这样做。也许你会被某人勒索，威胁要向你的雇主透露你在 50 岁之前心脏病发作的几率比一般人高出 60%？ 无论关注的细节是什么，它们都是笼统的，从不成熟的到雄辩的。
但在我看来，这一切都是毫无意义的。我认为 10 年后，大多数人可能至少会拥有一种包含信息最丰富的 SNP 的基因型。我认为全基因组测序将会非常非常普遍。 我也怀疑这些信息只会有一份副本。 Right now digital security is not that great. People only care when there’s a breach. But in reality there are breaches far more often than people realize. Apparently it is common practice for technically savvy organized criminal gangs to exploit security holes at major financial institutions, steal personal data, and then blackmail the institutions by threatening to divulge the information. The institutions usually pay up, as the cost vs. benefit isn’t even close.
人们可以想象，当基因型信息在安全性较差的医学数据库中传播时，类似的事情会经常发生。你所需要的只是一个薄弱环节，然后它就消失了。现在，如果您的信用卡号码因黑客从泄露的数据库中提取而暴露，您可以致电您的信用卡公司并取消该卡。 如果有人得到了您的序列，您就无法将其取消。 它就在那里。是你的。永远（除非体细胞突变和某种无处不在的基因治疗）。
当然，他们可能会得到一个序列，但缺少附加的名称。这种情况经常发生在其他数据上，这就是为什么公司有时会大肆展示没有存档“个人身份信息”。但基因型本质上是 个人可识别。 如果他们有一个大数据库，他们可能会交叉检查并寻找匹配项。如果他们找不到你，他们可能会找到亲戚。即使您确信自己没有暴露，您的亲戚也可能会暴露，这会立即导致 每个人 一些与您的遗传相关性直接相关的信息。
（从重新发布 探索/ GNXP 经作者或代表的许可）
关注@razibkhan 
“I also doubt there’s just going to be one copy of this information.”
Of course there is more than one copy of the information. Every cell has a copy.
If you really want to ensure your genetic privacy, you had better start worrying about biological copies. Don’t lick the envelope that contains your resume. Don’t leave any hairs behind during the interview. Don’t even think about peeing in a cup for a pre-employment drug test.
If you really want to ensure your genetic privacy, you had better start worrying about biological copies. Don’t lick the envelope that contains your resume. Don’t leave any hairs behind during the interview. Don’t even think about peeing in a cup for a pre-employment drug test.
right. though this is a different issue. getting someone’s information like this requires some investment of time/energy. making a digital copy can be much faster (granted, copying a 3 GB genome isn’t so easy today, but it may be pretty easy in 10 years).
甚至不必是外部黑客；仅仅 23andMe 等公司的一名心怀不满或不择手段的员工就可能获得大量信息。许多（大多数？）最初的 DTC 公司将倒闭……但他们的文件不会简单地消失。是的，从长远来看，遗传隐私是不安全的，我认为许多用户意识到了这一点，但还没有真正考虑到对其他后代和血亲的全面影响。
“我不知道为什么有人会这样做。也许你会被某人勒索，威胁要向你的雇主透露你在 50 岁之前心脏病发作的几率比一般人高出 60%？无论关注的细节是什么，它们都是笼统的，从不成熟的到雄辩的。”
问题是我们不知道 DNA 技术将来能够揭示什么关于我们的信息。还有很多很多东西需要学习。
比方说，它不是您给出的心脏病示例，而是一种使某人倾向于“邮寄”的遗传标记。那么让这个人自由自在……或者生孩子就成为雇主甚至社会的潜在责任。
至于“不舔信封”和所需的努力——同意，这需要大量的时间/精力。
今天。
不过，我们无法预测未来会有多容易。过去十年我们走了多远？我们还能走多远？
比方说，它不是您给出的心脏病示例，而是一种使某人倾向于“邮寄”的遗传标记。那么让这个人自由自在……或者生孩子就成为雇主甚至社会的潜在责任。
对。 but lets keep in mind that genomics is NOT MAGIC. if there was a large effect variant for “going postal” it is probably already known 🙂 and it is. a company can simply look at the history of your family from public records today, and ascertain what your probability of going postal is. genomics will probably add some on the margins in the future, but most of the risk is out there to mine if you so choose (obituaries list the cause of death, etc.).
不过，我们无法预测未来会有多容易。过去十年我们走了多远？我们还能走多远？
don’t pose rhetorical what-if’s which leave the whole sample space hanging. it’s useless. give some concrete the possibilities. i have no idea what scenarios you might imagine. aliens who arrive in large numbers to become free-labor servitors to retrieve envelopes? it is 可能。 but plausible?
It’s like the internet – what you put up there is pretty much there forever and someone could always use it against it. Unfortunately, while you can control whether you put up embarrassing drunken photos you cannot control the contents of your genome. And we’ve all seen Gattaca.
To some degree we may have to accept that in the future our genetic information will not be totally private – particularly if we want the benefits the better knowledge of our genes may provide us one day. But we need to make sure our genetic anti-discrimination laws are up to the task of protecting us and are enforced consistently. Of course that still leaves you vulnerable to some whackadoo who wants to do something terrible to you, but there are plenty of ways out there for a crazy bad person to hurt you without your genetic info. If someone really wants to do someone else serious harm and doesn’t care about the law, they will find a way with or without your genome. I’m much more worried about large scale discrimination from employers or others than I am about the lone person who would pore through my DNA and search various databases looking for something to hang over my head.
but there are plenty of ways out there for a crazy bad person to hurt you without your genetic info
yep. much easier ways alas….
In just about all situations I can imagine, someone who knows you personally will know you better than someone who knows your genome. He’ll know your actual strengths and weaknesses, not just your potential. The one exception I can think of is that you have a gene that says you 将 get a certain genetic disease within the next 10 years. And how often is that going to happen? And besides, presumably you already know that yourself, and have already taken steps, and may not even be keeping it a secret.
“我正在和一些已经接受过基因分型的朋友讨论如何将他们的信息放入公共领域。他们是一群非常精明的人（六个人中有一半已经被基因分型），”
是哪一个？全部还是一半？
我认为我们正在从不同的角度看待这个问题。我同意根本不能假设数据的隐私。但我们需要的是防止滥用的保护措施。
拒绝承保并不是一个理论上的问题。是真的。犯罪数据库检查寻找亲属是真实的。今天已经产生了后果。
其他国家已设法在不限制研究和个人使用的情况下建立保护。我认为这篇文章非常引人注目，也请查看评论中的文档：“DNA 盗窃：认识到非自愿基因收集和测试的犯罪”。
http://www.genomicslawreport.com/index.php/2010/12/09/surreptitious-genetic-testing-wikileaks-highlights-gap-in-genetic-privacy-law/
“我不知道为什么有人会这样做。”
很明显谁会这样做：保险公司。但在我看来，这种类型的开放准入将是一件好事：保险公司和被保险人之间的信息不对称将会减少，因此平均医疗保险价格将会下降（尽管不同客户支付的价格之间的差异将会增加）。
“Perhaps you could be blackmailed by someone threatening to disclose to your employer than you had a 50% greater chance of a heart attack before the age of 60 than the general population?”
A more specific example and good candidate for blackmail – paternity. You’d need 2 sets of DNA, but the results are unequivocal…
9. Jonathan Says: Which was it? All of them or half of them?
“They were a pretty savvy lot (half of the six had been genotyped)”
Should it have been only some of the friends, it probably would have been: “They were a pretty savvy lot (the half of the six that had been genotyped)”
我们 *能够* surmise is that *你* were not involved in said discussion…
<_
sorry about that, it was late and it got confused in a reedit. i think it’s clearer now 🙂
This has already been a hot bed issue in the pharmaceutical industry where patients who had their DNA, RNA, and other genetic materials sampled by pharmaceutical companies in order to help diagnose or treat an ailment that person has/had. Along the way the pharmaceutical company does other testing on the genetic material (without the donors authorization or notification) and finds a potential treatment and/or cure for another disease.
The problem now is that the pharmaceutical company claims ownership of this persons genome sequence and therefore cannot only prevent the donor from receiving any potential profits, it also allows the pharmaceutical company to keep the treatment/cure on ice because it competes with a drug they already provide. Again the donor has no say in forcing them to hand it over or make use of it.
As for genome discrimination, you’d batter DAMN WELL believe it’s happening here and now and it will only get worse in the future if actions aren’t taken here and now to protect it. I still get discriminated against by employers because I have long hair and an ear ring. It makes no difference if my qualifications are above and beyond any other candidate, or that my background check is spotless, or if I can pass a drug test at the drop of a hat; they simply will not hire me because they are discriminative against and an adult male who chooses to let his hair grow out.
It’s 2011 and I can still be refused a job for having long hair, what makes you think you won’t be refused a job or even health/medical/life insurance because your genome sequence says you have a 30% probability of stroke by age 40?
http://www.nytimes.com/2009/01/11/magazine/11Genome-t.html?pagewanted=all
How far are we from making personalised poisons? Guns are much simpler but not nearly as sexy. 😛