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竊密風云:誰偷了你的基因?

2014-04-29 00:00:00byDavidEwingDuncan
瘋狂英語·閱讀版 2014年8期

Keeping track of what we reveal about ourselves each day—through email and text messages, Amazon purchases and Facebook“likes”—is hard enough.

Imagine a future when 1)Big Data has access not only to our shopping habits, but also to our DNA and other deeply personal data collected about our bodies and behavior—and about the inner workings of our proteins and cells. What will the government and others do with that data?

Consider this 2)scenario: A few years from now the 3)National Security Agency hires a young analyst trained in cyber-genetics. She is assigned to comb through millions of DNA profiles in search of markers that might identify terrorists and spies and other persons of interest.

With her top-secret 4)clearance, the NSA’s new analyst discovers that the agency has accessed the genetic records of not only suspected terrorists, but also heads of state and leaders in industry, academia, the arts and news media. Troubled by what she has learned, the analyst announces that she’s taking a vacation, and flies to a 5)neutral country carrying top-secret cyber-genetic documents stored on an encrypted 6)nanochip. Like Edward Snowden, she gives her data to a reporter, hoping to 7)rectify the injustices she has witnessed.

For better or worse, we’re not there yet. In 2014, neither the government nor the public sector are anywhere near having a 8)World Wide Web for genetic and other personal 9)molecular data, or a global wireless network that can access anyone’s genetic data from anywhere. If this were the Internet, our current technology would be from about 1985—at the very beginning.

Physicians, however, are already using genomics to predict and diagnose diseases such as breast cancer and 10)macular degeneration. Thousands of parents use prenatal genetic tests to check if their embryo or fetus carries genes for devastating diseases such as 11)Tay-Sachs or 12)Fragile X syndrome. Researchers have discovered genetic markers that can identify 13)mutations in cancerous tumors, allowing doctors to target specific 14)chemotherapy drugs to match a patient’s mutations in their own DNA—leading, in some cases, to astonishingly high rates of remission.

In the past two decades, the drug industry and government agencies like the 15)National Institutes of Health have spent hundreds of billions of dollars to turn genetics from a research project into something real.

In January, San Diego-based Illumina, a genesequencing company, announced that it can now sequence an entire genome for only $1,000. This may sound pricey, but just a decade ago a single human genome cost hundreds of millions of dollars to sequence. The price is likely to drop even further in the years to come.

This year, the number of people having their genomes sequenced could top 50,000, and that number should increase 16)exponentially over the next few years, as governments and health-care systems announce projects to sequence hundreds of thousands of people.

Eventually, the mountains of data generated by our DNA and digital health records will be linked to Facebook and Twitter pages (or the future equivalent). We may not like it, but the reality is that we surrender this type of information to these companies every day.

The result in a few years will be staggeringly complex statistical models, designed to predict your behavior and identify personality types, including those prone to violence or terrorism.

Genetic predictions will not be perfect or 17)deterministic. Yet the more data amassed about individuals over time, the more accurate the modeling that creates the predictions.

For instance, scientists in a 2008 study associated a variant of the 18)MAOA gene—the so-called “warrior gene”—to a predilection for violent behavior in some people. The statistical strength of this correlation is weak, and even if you have that genetic marker, you may in fact be a full-on pacifist. But let’s say that, one afternoon, you as a carrier of this gene variant “liked” an essay by a former Palestinian commando-turned-diplomat. An hour later you got curious about AlQaeda and did a quick Google search. What if some search 19)algorithm at the NSA then connected your social media data to your DNA? The next thing you know, the Transportation Security Administration is stopping you from boarding your flight home for the holidays.

As we rush into an era of bigger and better data being crunched by legions of government and public sector employees, we may have to get used to our health information being hacked and interpreted incorrectly in ways that might work against us. Of course, it would be better to have an open debate and transparent policies about this type of data now.

Failing that, we may wake up one morning to read that the NSA once again has been spying on us—only this time, it won’t be about who we called or texted, but the secrets buried deep inside our cells, which tell us a great deal about who we are and who we might be in the future.

要清楚知悉自己每天通過電郵、短信、亞馬遜網上購物記錄,以及臉譜網點“贊”曝光了多少個人信息,這已經是夠難的了。

設想一下如果將來的大數據庫不僅可以記錄我們的購物習慣,還可以存儲我們的基因信息和其他有關我們身體和行為的深層個人隱私——我們體內蛋白質和細胞的內部運作,那么政府和其它機構會如何使用這些數據呢?

想象一下這個場景:幾年后,美國國家安全局雇傭了一位研究網絡遺傳學的年輕分析員。她的任務是梳理數以百萬計的基因檔案,找出那些可以甄別恐怖分子、間諜和其他嫌疑人的獨特標記。

由于獲準接觸到高級機密,這位國家安全局的新任分析員發現當局掌握的基因檔案不僅包含嫌疑恐怖分子,還涉及各國元首以及工業界、學術界、藝術界與新聞傳媒界的領軍人物。對于獲悉的這一切,這位分析員深感困擾,于是她對外宣稱她度假去了,然后帶著存有網絡基因頂級機密文件的加密納米晶片飛往一個中立國。就像愛德華·斯諾登那樣,她將這些數據交給一位記者,希望她親眼見到的這些不公能夠得到修正。

但不管怎樣,目前情形還沒到那個地步。在2014年,不論是政府還是公共部門,都遠未能建立起儲存基因和其他個人細胞分子數據的萬維網,或能夠獲取任意基因數據的全球無線網絡。如果將其比作是互聯網,那么如今的技術水平就相當于大概1985年互聯網剛剛起步的階段。

不過,內科醫生們已經將基因組學用于預測及診斷諸如乳腺癌和黃斑變性這樣的疾病了。……

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