Keeping track of what we reveal about ourselves each day—through email and text messages, Amazon purchases and Facebook“l(fā)ikes”—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 “l(fā)iked” 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(wǎng)上購(gòu)物記錄,以及臉譜網(wǎng)點(diǎn)“贊”曝光了多少個(gè)人信息,這已經(jīng)是夠難的了。
設(shè)想一下如果將來的大數(shù)據(jù)庫(kù)不僅可以記錄我們的購(gòu)物習(xí)慣,還可以存儲(chǔ)我們的基因信息和其他有關(guān)我們身體和行為的深層個(gè)人隱私——我們體內(nèi)蛋白質(zhì)和細(xì)胞的內(nèi)部運(yùn)作,那么政府和其它機(jī)構(gòu)會(huì)如何使用這些數(shù)據(jù)呢?
想象一下這個(gè)場(chǎng)景:幾年后,美國(guó)國(guó)家安全局雇傭了一位研究網(wǎng)絡(luò)遺傳學(xué)的年輕分析員。她的任務(wù)是梳理數(shù)以百萬(wàn)計(jì)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(dú)特標(biāo)記。
由于獲準(zhǔn)接觸到高級(jí)機(jī)密,這位國(guó)家安全局的新任分析員發(fā)現(xiàn)當(dāng)局掌握的基因檔案不僅包含嫌疑恐怖分子,還涉及各國(guó)元首以及工業(yè)界、學(xué)術(shù)界、藝術(shù)界與新聞傳媒界的領(lǐng)軍人物。對(duì)于獲悉的這一切,這位分析員深感困擾,于是她對(duì)外宣稱她度假去了,然后帶著存有網(wǎng)絡(luò)基因頂級(jí)機(jī)密文件的加密納米晶片飛往一個(gè)中立國(guó)。就像愛德華·斯諾登那樣,她將這些數(shù)據(jù)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(gè)地步。在2014年,不論是政府還是公共部門,都遠(yuǎn)未能建立起儲(chǔ)存基因和其他個(gè)人細(xì)胞分子數(shù)據(jù)的萬(wàn)維網(wǎng),或能夠獲取任意基因數(shù)據(jù)的全球無線網(wǎng)絡(luò)。如果將其比作是互聯(lián)網(wǎng),那么如今的技術(shù)水平就相當(dāng)于大概1985年互聯(lián)網(wǎng)剛剛起步的階段。
不過,內(nèi)科醫(yī)生們已經(jīng)將基因組學(xué)用于預(yù)測(cè)及診斷諸如乳腺癌和黃斑變性這樣的疾病了。成千上萬(wàn)的父母通過產(chǎn)前基因測(cè)試來排查他們的胚胎或胎兒是否攜帶嚴(yán)重致病基因,例如家族性黑矇性癡呆癥和X染色體易裂癥。研究人員已經(jīng)發(fā)現(xiàn)了癌性腫瘤突變的基因標(biāo)記,這將有助于醫(yī)生有針對(duì)性地使用特定的化療藥物治療患者的基因突變——在某些案例中,這種方法有著驚人的癥狀緩解作用。
在過去的二十年里,制藥產(chǎn)業(yè)和美國(guó)衛(wèi)生研究院等政府機(jī)構(gòu)都投入了數(shù)千億美金,希望把遺傳學(xué)的研究項(xiàng)目應(yīng)用到實(shí)際生活當(dāng)中去。
今年一月份,總部位于圣地亞哥的Illumina基因測(cè)序公司宣布:他們目前測(cè)出整個(gè)染色體組序列的成本只需1000美元。這聽起來可能還是挺貴的,但就在十年前,一個(gè)人類染色體組測(cè)序的花費(fèi)就高達(dá)數(shù)億美元。在未來幾年,基因測(cè)序的價(jià)格甚至?xí)兊酶颖阋恕?/p>
今年,去做基因染色體測(cè)序的人數(shù)將達(dá)五萬(wàn)之多,并且在未來幾年內(nèi)這個(gè)數(shù)字將呈倍數(shù)增加,因?yàn)槎鄧?guó)政府和衛(wèi)生保健系統(tǒng)宣布要開展為數(shù)十萬(wàn)人進(jìn)行基因測(cè)序的項(xiàng)目。
最終,這些關(guān)于我們的基因和數(shù)字健康記錄的大量信息將被發(fā)布到我們的臉譜和推特主頁(yè)上(或是未來類似的分享網(wǎng)站上)。我們可能不喜歡這樣,但現(xiàn)實(shí)是我們每天都把這種信息“拱手相送”給這些公司。
幾年后的情形會(huì)是這樣的:極其復(fù)雜的統(tǒng)計(jì)模型會(huì)預(yù)測(cè)你的行為并判斷你的性格類型,包括是否有暴力傾向或恐怖主義傾向。
基因預(yù)測(cè)并不完美,也不具決定作用。不過隨著時(shí)間的推移,個(gè)人數(shù)據(jù)的累積越來越多,這種進(jìn)行預(yù)測(cè)工作的統(tǒng)計(jì)模型也會(huì)越來越準(zhǔn)確。
舉個(gè)例子,科學(xué)家們?cè)?008年的一項(xiàng)研究中,將變異的單胺氧化酶A基因(號(hào)稱“斗士基因”)與某些人群的暴力傾向聯(lián)系起來。而這種聯(lián)系的統(tǒng)計(jì)有效性是很低的,即使你攜帶了這種暴力基因,你仍可能是一名徹頭徹尾的和平主義者。但是假設(shè)某天下午,作為暴力基因攜帶者的你“贊”了一位巴勒斯坦突擊隊(duì)員出身的外交官寫的文章。一個(gè)小時(shí)以后,你對(duì)“基地組織”感到好奇,并用谷歌快速搜索了相關(guān)資料。假若國(guó)家安全局的某些搜索算法在那時(shí)把你的社交媒體數(shù)據(jù)和你的基因信息聯(lián)系起來,將會(huì)有什么事情發(fā)生呢?下一秒,美國(guó)運(yùn)輸安全管理局就會(huì)阻止你登上回家度假的飛機(jī)。
隨著我們匆匆踏入這樣一個(gè)時(shí)代——由政府和公共部門職員組成的軍團(tuán)快速啃食更多、更有利的數(shù)據(jù),我們也許不得不習(xí)慣于自己的健康信息被“黑客”竊取,并被以一種有可能對(duì)我們不利的錯(cuò)誤方式進(jìn)行解讀。當(dāng)然,如果能針對(duì)目前這種隱私信息進(jìn)行一場(chǎng)公開辯論并制定透明的政策,情況會(huì)好一些。
但如果做不到這一點(diǎn),那么我們可能在某天早晨醒來,讀報(bào)紙時(shí)發(fā)現(xiàn)國(guó)家安全局又一次在暗中監(jiān)視我們——只不過這一次,不是關(guān)于我們和誰(shuí)打電話或發(fā)短信,而是關(guān)于那些深藏在我們細(xì)胞當(dāng)中的秘密,這些秘密揭示了大量關(guān)于我們的為人以及日后走向的信息。