家用DNA检测设备日益普及，谁在用你的数据获益？

美国联邦贸易委员会去年发布了一份引人注目的公文，大意是说，如果你考虑购买一台家用DNA测试设备，最好先想想隐私的问题。文中写道：“虽然大多数测试只需要用棉签在口腔里取样，但即便是这样少量的样本，也能从基因层面暴露你的生物特性。”

联邦贸易委员会的公文提出了一个重要问题：谁能从你最稳私的生物数据中获利呢？

以基因测序公司23andMe为例，该公司拥有500万用户的DNA数据。该公司也与基因泰克（Genentech）和日本大冢制药等学术机构和制药公司建立了合作关系。23andMe公司的联合创始人、CEO安妮·沃西基表示，用户无需担心这些合作关系，因为首先这些数据已经去除了身份信息，其次其他机构只有经过公司的允许才能使用相关数据。

沃西基还表示，她想让23andMe的用户拥有自身DNA数据的所有权，并且充分了解自己的DNA信息，以便对任何潜在的基因风险做出应对。

让病人拥有自身基因数据的所有权，这种想法令人震憾，也相当激进。心脏病与数字健康专家、斯克普利斯应用科学研究所主任埃里克·托波尔对此表示欢迎。他表示：“我坚信，每个人都应该拥有自己的医疗数据，他们有这个权利。身体是他们的，何况这还是能决定人生死的重要信息。”

不过拖波尔也指出，正由于DNA数据的价值巨大，它也易成为不法分子觊觎的目标。“它也不时会被黑客入侵和窃取，或在用户不知情的情况下被卖给别人——不过在多数情况下，这些信息都是已经取消了身份信息的。”

不过，有些公司确实也曾公开夸口称，他们可以轻易地将单个用户信息从海量的DNA数据中识别出来。比如Acxiom公司就是美国最大的数据掮客，该公司称，它能将消费者的收入水平、购物习惯等信息与他们的临床病历和医保报销信息进行匹配。这家位于美国阿肯色州的公司还表示，虽然很多DNA数据去除了身份信息，无法直接识别出用户身份，但这些数据也为医疗公司提供了一份更充分的总体图景，使他们能针对用户群体提供更精准的治疗、保险和营销。

Acxiom公司的数据伦理负责人席拉·柯克拉苏尔表示，我们所处的时代已经不再是隐私至上的时代，而是在“道德约束下合理使用数据”的时代。你的DNA数据应该也必将用于合理的收集与分析，以获得有价值的见解。不过普通消费者最关心的或许依然是：从中获益的到底是谁？（财富中文网）

译者：朴成奎

The Federal Trade Commission issued a striking holiday missive last year: If you’re thinking of buying an at-home DNA testing kit, make sure to consider the privacy implications: “Although most tests require just a swab of the cheek,” the agency wrote, “that tiny sample can disclose the biological building blocks of what makes you you.”

The issue flagged by the FTC: Who else might profit from your most personal of data?

Genome sequencer 23andMe, for example, has DNA from its 5 million customers. It also has partnerships with academic institutions and drug companies like Genentech and Otsuka. 23andMe’s CEO and cofounder Anne Wojcicki says those relationships shouldn’t cause customers concern: their data is de-identified and can only be used with their consent.

Wojcicki says, almost evangelically, that she wants 23andMe’s consumers to own their data—and to have the information they need about any potential genetic risks to act.

The idea that patients would actually be in charge of such personal information is— shockingly—a radical one. And a welcome one to people like cardiologist and digital health pioneer Eric Topol. “I strongly believe that everyone should own their medical data—and they have a right to that,” says Topol, the director of the Scripps Translational Science Institute. “It’s their body and it can make a life- or-death difference.”

But, says Topol, that data’s underlying value also makes it vulnerable. “It’s being hacked and stolen left and right, no less being sold without people knowing it—even though, in many cases, it’s de-identified.”

Some companies, indeed, openly boast about how easy it can be to identify individual consumers from myriad sources of data. Acxiom, one of the country’s largest data brokers, touts its potential to marry consumer data—income level, shopping habits—with clinical records and medical claims. While the Arkansas company says that de-identified data remains that way, such a fuller picture of consumers can enable health care companies to do a better job treating, insuring, or marketing to them, it says.

Sheila Colclasure, who heads data ethics for Acxiom, says we no longer live in an era of privacy but one of “ethical data use.” Your data will—and should, she argues—be used to gain the valuable insights that come through its collection and analysis. For consumers, though, the question remains: Who gets the value?