美國聯邦貿易委員會去年發布了一份引人注目的公文，大意是說，如果你考慮購買一臺家用DNA測試設備，最好先想想隱私的問題。文中寫道：“雖然大多數測試只需要用棉簽在口腔里取樣，但即便是這樣少量的樣本，也能從基因層面暴露你的生物特性?！?

聯邦貿易委員會的公文提出了一個重要問題：誰能從你最穩私的生物數據中獲利呢？

以基因測序公司23andMe為例，該公司擁有500萬用戶的DNA數據。該公司也與基因泰克（Genentech）和日本大冢制藥等學術機構和制藥公司建立了合作關系。23andMe公司的聯合創始人、CEO安妮·沃西基表示，用戶無需擔心這些合作關系，因為首先這些數據已經去除了身份信息，其次其他機構只有經過公司的允許才能使用相關數據。

沃西基還表示，她想讓23andMe的用戶擁有自身DNA數據的所有權，并且充分了解自己的DNA信息，以便對任何潛在的基因風險做出應對。

讓病人擁有自身基因數據的所有權，這種想法令人震憾，也相當激進。心臟病與數字健康專家、斯克普利斯應用科學研究所主任埃里克·托波爾對此表示歡迎。他表示：“我堅信，每個人都應該擁有自己的醫療數據，他們有這個權利。身體是他們的，何況這還是能決定人生死的重要信息?！?

不過拖波爾也指出，正由于DNA數據的價值巨大，它也易成為不法分子覬覦的目標。“它也不時會被黑客入侵和竊取，或在用戶不知情的情況下被賣給別人——不過在多數情況下，這些信息都是已經取消了身份信息的。”

不過，有些公司確實也曾公開夸口稱，他們可以輕易地將單個用戶信息從海量的DNA數據中識別出來。比如Acxiom公司就是美國最大的數據掮客，該公司稱，它能將消費者的收入水平、購物習慣等信息與他們的臨床病歷和醫保報銷信息進行匹配。這家位于美國阿肯色州的公司還表示，雖然很多DNA數據去除了身份信息，無法直接識別出用戶身份，但這些數據也為醫療公司提供了一份更充分的總體圖景，使他們能針對用戶群體提供更精準的治療、保險和營銷。

Acxiom公司的數據倫理負責人席拉·柯克拉蘇爾表示，我們所處的時代已經不再是隱私至上的時代，而是在“道德約束下合理使用數據”的時代。你的DNA數據應該也必將用于合理的收集與分析，以獲得有價值的見解。不過普通消費者最關心的或許依然是：從中獲益的到底是誰？（財富中文網）

譯者：樸成奎

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?