【clover】ECONOMIST DEBATE by Misir

misirUID: 2684938

关于米饭的DEBATE，我在自己看的基础上，重新做了一个PDF版的~而且是有批注的哦^^
刚才试着把东西粘上来的，可是论坛的文字处理功能实在不敢恭维。。。
所以要检查作业的话，就麻烦下载着看吧^^

米饭的原帖：https://bbs.gter.net/thread-949685-1-1.html
ECONOMIST DEBATE 原文：http://www.economist.com/debate/days/view/245

银落UID: 2632560

good~

misirUID: 2684938

一个backgroud 不知要看多久。。。
还是和昨天一样，用PDF版的。。。:lol

misirUID: 2684938

恭喜下自己把DEBATE的BACKGROUD看完了。。。
下面的附件是所有的DEBATE的笔记。。。
觉得DEBATE还是很好的材料的说~

misirUID: 2684938

OK，在米饭的基础又加了些注释~:p

misirUID: 2684938

今天开始新的DEBATE~撒花花。。。:p
不过这个可能不是每个人都感兴趣的话题~
因为这个涉及到了偶的专业知识，所以我分析这个DEBATE了。。。
恩，废话少说——
The ethics of DNA databasing【基因库的伦理问题】。。。

About this debate

DNA carries a person's identity. It also carries a vast amount of other information about that person's biology, health and, increasingly, psychological predispositions心理倾向. This information could have great medical value, en masse[s1] , but might be abused, ad hominem人身攻击, by insurers, employers, politicians and civil servants. Some countries are building up DNA databases, initially using the excuse that these are for the identification and prosecution起诉of criminals, but also including the unprosecuted and the acquitted. Should such databases be made universal? Is it ever right for the DNA of the innocent to be used for any purpose without the consent of the "owner". If so, when?提出讨论的话题。。。

[s1]in a body : as a whole
----------------------------------------------
为了方便大家下线看，所以有PDF版的哈。。。

misirUID: 2684938

Background reading【A】

Epigenetics实验胚胎学
Mysterious ways
Evidence for an alternative form of inheritance
Jan 22nd 2009 | TORONTO | From The Economist print edition

JUST how identical are identical twins? That is the question Art Petronis at the Centre for Addiction and Mental Health in Toronto and his colleagues investigate in a paper just published in Nature Genetics. The answer is “not as identical as you might think”. Moreover, the differences may help to illuminate a process called epigenesis[s1] , which allows characteristics to be inherited in a way that is partly independent of the composition of their DNA.

Identical twins are born from a single fertilised egg, or zygote合子，受精卵. Genetically speaking, therefore, they are indeed the same. Such “monozygotic” twins have been a boon[s2] for researchers who wish to disentangle the effects of “nature” (ie, the genes) from those of “nurture” (ie, the environment), since they can compare them with non-identical—or “dizygotic” twins.

The effects of gestation妊娠are neatly set aside in such comparisons, since all co-twins share a uterus子宫. However dizygotic twins share no more DNA than ordinary siblings同胞. So if one monozygotic twin, for example, develops an ailment that the other escapes, the culprit[s3] is probably environmental. Conversely, when identical twins prove more likely to share a disease than dizygotic twins, the difference is chalked up to their genes.

It is not, however, enough for organisms to share DNA in order to share characteristics. Those genes must also behave in the same way. One of the ways that the behaviour of genes is regulated is by the application to their DNA of particular clusters of atoms, known as methyl甲基groups. Methylation shuts a gene down. To the extent that the pattern of methylation is passed from parent to offspring, it forms a second, “epigenetic”, inheritance mechanism parallel to the primary DNA-based one. The importance of epigenetic inheritance is now a matter of hot debate.

Dr Petronis and his team therefore looked at methylation patterns in DNA from cheek swabs, blood samples and gut biopsies[s4] that had been collected from 57 pairs of monozygotic twins. They uncovered a significant amount of variation between twins, possibly enough to explain why apparently heritable diseases that require the coincidence of several genetic risk-factors do not, in practice, always appear in both twins. Schizophrenia精神分裂症, for example, has a family component. But if one twin of a monozygotic pair develops it, there is only a 50% chance that the other will too, rather than the 100% chance that you would see if the sequence of genetic “letters” in the DNA were the only cause.

Dr Petronis then looked at whether the amount of difference between the epigenomes of identical twins was similar to that between non-identicals. He studied samples from 80 pairs of twins, half of whom were non-identical, and, once again, created epigenetic profiles for all of them. The results suggest that although monozygotic twins do differ epigenetically, they differ less than dizygotic twins.

This is all very confusing. The prevailing wisdom about epigenesis is that most existing methylation is erased when the eggs and the sperm are maturing. That should stop epigenetic patterns being passed on, and allow new ones to be imposed to suit the needs of the newly created organism. Indeed, there are several waves of epigenetic reprogramming during an embryo’s development.

That some methylation escapes pre-fertilisation erasure has been suggested by experiments on other animals, but this has been thought the exception, rather than the rule. If that were so, though, the degree of difference between identical and non-identical twins would be broadly the same. It is not. Quite a lot of pre-existing methylation is making its way into the new individual—and thus providing both a complication to those who try to understand the intricacies复杂of inheritance, and a promising new line of inquiry.

[s1]development of a plant or animal from an egg or spore through a series of processes in which unorganized cell masses differentiate into organs and organ systems also : the theory that plant and animal development proceeds in this way 后成说― compare

[s2]BENEFIT FAVOR especially : one that is given in answer to a request

[s3]a person or thing responsible for causing a problem

[s4]the removal and examination of tissue, cells, or fluids from the living body

misirUID: 2684938

【B】
DNA and human rights
Throw it out
A court decision limits the scope of police DNA databases
Dec 4th 2008 | From The Economist print edition

HOLDING DNA samples and fingerprints of suspects who are later acquitted, or have the charges against them dropped, violates their right to privacy, the European Court of Human Rights ruled unanimously无异议地; 全体一致地on December 4th. Its decision, which is binding on all 47 members of the Council of Europe, will have an immediate impact on around 850,000 innocent people whose genetic profiles are stored on the police DNA database in England and Wales.

The case concerned two British citizens, both from Sheffield—Michael Marper and a man known simply as S. In January 2001, when S was 11, he was arrested and charged with attempted robbery, but acquitted six months later. In March that same year Mr Marper was arrested on a charge of harassing烦扰 his partner; the case was then dropped after a reconciliation和解four months later. Both men had their fingerprints and DNA samples taken on arrest. After being cleared, each asked for his data to be destroyed, but was told that this was impossible.

With 5.3m profiles, representing 9% of the population, Britain’s DNA database is believed to be the biggest in the world; few other countries hold profiles of more than 2% of their citizens. In England and Wales (not Scotland) the police take DNA samples from anyone who is arrested for a “recordable” offence—usually one carrying a custodial sentence判处监禁, but including peccadillos小过失 such as begging or being drunk and disorderly. (This happened to Damian Green, the Tory immigration spokesman, when he was arrested on November 27th in connection with Home Office leaks.) The data is then stored for the rest of the suspect’s life, even if he is acquitted or never charged. No other democracy does this.

In Scotland if a suspect is acquitted his DNA profile usually has to be destroyed. Swedish authorities may retain only the profiles of criminals who have spent more than two years in prison. In Norway and Germany a court order is required to store a DNA sample permanently. Only the DNA of convicted criminals can usually be kept in America. Since 2005 the FBI has been allowed to take DNA samples on arrest but these can be expunged删去, on request, if no charges are brought or the suspect is acquitted. Of some 40 states that have their own databases, only California allows permanent storage of DNA profiles of those who are charged but then cleared.

Besides the innocent adults, included in Britain’s DNA database are the profiles of some 1m people who were under 18 when they were arrested. Many were never convicted, but all have been tagged for life as having got on the wrong side of the law. Mr Marper and S argued that the system is both discriminatory and an infringement of their privacy rights. They were entitled to be treated in the same way as the rest of the unconvicted population, they said. In 2004 the House of Lords英国国会上议院 rejected their claim. The European Court ruling upheld their privacy complaint and argued that it was not necessary to address separately the question of discrimination.

Thanks to the use of DNA in nabbing逮捕kidnappers, rapists强奸犯 and the like, its collection from criminal suspects is popular in Britain. Yet few, other than the police, favour the permanent storage of anyone who has been arrested. Some argue that the best solution is simply to store everyone’s DNA. But that would be expensive and prone to易于 hacking and leaking, risking another breach of privacy.

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【C】
DNA sequencing
The hole story
Nanopores may lead the way to a new generation of sequencing
Oct 16th 2008 | OXFORD | From The Economist print edition

THE desk in Gordon Sanghera’s office at Oxford Nanopore proudly displays a piece of knobbly plastic. It has a hole running through it and looks rather like a cruller油炸小煎饼doughnut, though with grey icing. In fact, it is a model of a protein molecule called alpha-hemolysin溶血素
. Dr Sanghera, the firm’s boss, believes this molecule will revolutionise the sequencing of DNA.

In nature, alpha-hemolysin is used by Staphylococcus aureus金黄色葡萄球菌, a disease-causing bacterium, to punch holes in cells’ outer membranes. The cell contents, particularly its ions (electrically charged atoms) then leak through the hole and it dies. Pushing a DNA molecule through the hole changes the speed at which ions pass. That will, in turn, be registered as a change in electrical current. The exact change varies with the bit of the DNA molecule that is passing through. So, in principle, the protein can record the order of the bases (the chemical “letters” that carry the genetic code) which make up the molecule.

If that idea can be put into practice it will, indeed, be a revolution. At the moment, sequencing DNA is slow and expensive. The molecule must be replicated many times (a step called amplification) and also labelled with fluorescent萤光的tags. These processes introduce errors and mean that a gene has to be sequenced several times to ensure a reliable result. Moreover, the cost of buying and operating the sequencing equipment is high. The result is that sequencing an entire genome costs hundreds of thousands of dollars.

In 2004 America’s National Institutes of Health (NIH) challenged researchers to work out a way of sequencing a genome for $1,000. Many of the responses involve running strands of DNA through tiny pores of one sort or another and Jeff Schloss, a programme director at the National Human Genome Research Institute (which is part of the NIH), reckons this is a particularly fruitful approach.

These “nanopore” techniques, originally proposed by Hagan Bayley, a professor of chemistry at Oxford, in 1992, are simple, at least in principle. They do not need fluorescent labels and will probably not require amplification, either. They can “read” DNA directly and rapidly, and are cheap enough to replicate in vast numbers.

In the case of Oxford Nanopore’s technology, the DNA molecule is fed through the hole one base at a time by a second protein, an enzyme called an exonuclease[s1] . This can clearly distinguish the four DNA letters, A, C, G and T. It may also be able to detect whether a letter is methylated, though this has not yet been independently verified.

Methylation, the addition to a base of a group of three hydrogens and a carbon atom, is one way in which genes are regulated. It seems to be important in some sorts of cancer, and there is also evidence that regulation by methylation can be passed from parent to offspring, meaning that characteristics acquired by one generation may be inherited by the next. The importance of such “epigenetic” inheritance is controversial; some researchers reckon it trivial while others think its role is underestimated. The ability to track methylation is thus scientifically important.

Though the firm has proved the principle, a single pore would take about 70 days to sequence an entire human genome (which has roughly the same number of letters as 1,000 Russian novels). So, in another laboratory on the other side of the science park, its researchers are working on ways of integrating the thousands of nanopores needed to read a genome in a day. Their working model is a shoebox-sized package of electronics and liquid-filled tubes, with a silicon chip at its core. The chip has 128 tiny wells, and inside each of these wells are the nanopores.

Dr Sanghera is unwilling to say how soon he will have a product, but other firms are breathing down his neck. Pacific Biosciences of Menlo Park, California, for example, eschews避开 nanopores in favour of a technique that uses fluorescence to watch DNA molecules being built up, base by base, though it reckons it will not have a product until 2010. Which all bodes well for the NIH’s challenge. The next, far bigger question, is—when this era of cheap, personalised genomics finally does arrive, what will be done with all the data?尖刻的问题。。。

[s1]an enzyme that breaks down a nucleic acid by removing nucleotides one by one from the end of a chain核酸外切酶

misirUID: 2684938

【D】
The DNA database
Big, bigger, biggest
The courts ponder how much genetic information the police should hold
Feb 28th 2008 | From The Economist print edition

IT IS an object lesson in the unwisdom of shopping your nearest and dearest after an argument. In 2001 Michael Marper was arrested after his partner complained of harassment; the couple were later reconciled and the case was dropped. But in the meantime Mr Marper had to give police a sample of his DNA—which is still sitting in Britain's DNA database, along with 4.5m others. That collection, already the world's largest, covers 7% of the population (and 40% of black men). It is still growing, boosted by samples taken from all those arrested for a wide range of offences and kept even if they are never charged.

Since this lovers' tiff, Mr Marper and a teenager known as “S”, who was tried for attempted robbery and acquitted, have spent much time trying to get their records removed from the database. In 2004 the House of Lords rejected their claim that the retention was discriminatory and infringed their rights to privacy. On February 27th the European Court of Human Rights heard their case; a judgment is expected later in the year. If they win, up to a million of the samples in the database—taken in connection with arrests that did not result in convictions—may have to be destroyed.

Public opinion regarding the DNA database is being pulled, hard, in opposite directions. A series of government data blunders has led citizens to question the wisdom of entrusting officials with something as sensitive as their DNA. And this database has serious flaws. It recently emerged that one in seven of the entries are duplicates, stored under different names. When arrested and asked for a DNA sample, some people simply lie about who they are, it seems.

But strengthening the case for putting every citizen on the database are a pair of convictions in February for some particularly shocking murders. Steve Wright and Mark Dixie both came to the attention of the police because DNA found at crime scenes matched samples taken for relatively minor offences. The police officer who led the murder hunt for Mr Dixie has called for a compulsory national database, and the Association of Chief Police Officers says there needs to be a public debate on the issue.

The government rejects this call, saying that a universal database would raise “significant practical and ethical issues”. Somewhat awkwardly, it also rejects the argument that being on the database stigmatises使蒙上污名，打上烙印 innocent people. “They have nothing to fear from providing a sample,” says a Home Office spokesman. “Retaining this evidence is no different from recording other forms of information such as photographs and witness statements.” Mr Marper, and other innocents and petty offenders, are urged to take comfort from the fact that they were added to the database for trivial reasons. The question is whether it would be fairer if the rest of the nation joined them there too.

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The moderator's opening remarks           quite good~

Mar 24th 2009 | Mr Geoff Carr  

Clarke's Third Law (the Clarke in question being Sir Arthur C., a distinguished writer of science fiction) is that any sufficiently advanced technology is indistinguishable from magic. That law applies nicely to the modern science and technology of genetics. On the one hand, understanding and eventually manipulating genes may lead to the treatment and even abolition of many diseases by white-magical (or, at least, white-coated) sorcerer-priests. On the other, dark necromancers plot to use the knowledge that genetics brings to regulate and manipulate people on behalf of [s1] commercial and political princes.

Magic, of course, depends on the audience not understanding what the conjurer is up to. That was Clarke's point. In the case of a stage show, the deception is both deliberate on the part of the conjurer and self-inflicted自己造成的，加于自身的on the part of the audience, who would enjoy the show less if they know how the tricks were done. Which is fine for show business, but is no way to conduct public policy. Hence the need for a serious debate on the matter, to which The Economist is privileged to make this small contribution.
前两段是用比喻的手法引出争论。。。有很多魔术、巫师之类的词。。。

For the truth, as both of our opening "speakers" eloquently雄辩地illuminate, is that the potential of genetics for both good and ill is great. And the more profound truth is that decisions will have to be made soon about how much genetic privacy a person is entitled to, even before those two potentials are properly understood. The accurate interpretation of the human genome is only just beginning, and where it will lead, no one knows. It is only recently, for example, that whole new classes of gene whose products regulate the functions of other genes, rather than being used as templates for the manufacture of proteins, have been identified. Other surprises surely await.

Art Caplan and Craig Venter are two of the most distinguished thinkers in their fields, but those fields are different and, in the end, it is probably the differences between their fields that lead to the distinction in their positions. Dr Venter is a geneticist with a background in the American navy's medical corps (he served in Vietnam). He has always been a man in a hurry. His team was the first to obtain the complete genetic sequence of a bacterium (an organism called Haemophilus influenzae流感嗜血杆菌), and he led the privately financed version of the effort to sequence the human genome, a project that both succeeded in its own right and chivvied[s2] publicly financed scientists to redouble their own efforts. Now, he wants to hurry genetic knowledge into the public arena so that the wider pattern can be seen, understood and acted on for the greater good. His mission might be summarised by Hippocrates's希波克拉底injunction: "I will prescribe regimens for the good of my patients according to my ability and my judgment."名人名言~

Dr Caplan's background, by contrast, is in the history and philosophy of science. The history of genetics is well known as one in which both ignorance and deliberate distortion of the truth have led to evil consequences—not just in essentially wicked本性邪恶的regimes政权；政治制度 such as that of Nazi Germany, but even in apparently benign places like Sweden and also in the United States. The eugenics[s3] that led to the castration of the "feebleminded" and the death camps for those deemed to belong to "inferior劣等的races" were the descendants of well-meaning, liberal-minded policies intended to improve the condition of humanity. Dr Caplan therefore draws a different lesson from Hippocrates: "Never do harm to anyone", and argues that it is the individual who is best placed to judge what will harm him.【一部分内容可用于政治和历史的ISSUE~】

At bottom实际上，本质上，根本上, the two speakers' arguments come down to归结为the oldest political argument of all—how do you balance private and public interests?—with the added twist of ignorance about how the science will eventually play out. It should be a fascinating debate.【记住这段话啊！】

[s1]in behalf of : in the interest of also : as a representative of

[s2]to tease or annoy with persistent petty attacks

[s3]a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed优生学

misirUID: 2684938

The proposer's opening remarks

Mar 24th 2009 | Professor Arthur Caplan  

There are, it is increasingly said, plenty of reasons why people you know and many you don't ought to have access to your DNA or data that are derived from it. Have you ever had sexual relations outside a single, monogamous一夫一妻的relationship? Well then, any children who resulted from your [url=]hanky-panky[/url][s1] might legitimately want access to your DNA to establish paternity父子关系or maternity. If various serious diseases run in your family then shouldn't your loved ones expect you to provide a sample of your DNA so that the family can establish who is and is not at risk of inheriting a disposition to the disease with greater accuracy. If you are young and eligible for military service the desk-jockeys of the military bureaucracy will want to keep a sample of your DNA handy in frozen storage should you encounter misfortune resulting in only tiny smidgens of yourself being all that is left. DNA banks prevent memorials to unknown soldiers. If you are a baby or a child, your parents rightly want to have a DNA sample on file so they can either identify you should you go missing or to help profile your behavioural and disease genetic risk factors so that they can take steps to improve your lot in life. The police might well want to have a sample of your and everyone else's DNA to make their lives easier as they try to sort through evidence at crime scenes. So might your boss, doctor, hospital, local university, pharmaceutical药品 company, insurance company and national immigration service.此段列举了各种各样需要DNA data的实例，意在述说它的好处~

Lots of reasons can be given about why genetic privacy ought to be abandoned for the greater good. But none of these is persuasive. No one should be peeking at your genes without your prior knowledge and consent.此句是关键啊~

The main reason why your DNA and any data derived from it should be yours to control is that they are intimately linked to your personal identity. And your identity is an asset that should not be taken from you or accessed without your express permission.

Those who wish to have your DNA, including the military, police, government, medical system, researchers and prosecutors all realise this. They know that they can track you, control you and even profit from you if they do not have to go through the nicety of asking for your permission to obtain or examine your DNA. But you should have the right to decide for what purpose someone can access any identifying information about you. This is especially true for genetic information that can reveal sensitive things about your health, history and behaviour, past, present and future.

You may well decide to donate your DNA in a familial study of disease risk, or to donate your DNA to a foundation or university for research; or to have your DNA stored so that you can be readily identified if something untoward were to happen to you; or you may decide to sell your DNA; or you may well decide to make your DNA available for a variety of purposes, but only if you receive convincing assurances that your personal identity will not be revealed to others; or you may not make it available unless you are paid. In any event, it must, if personal privacy and thus your autonomy and dignity are to have any meaning at all, be your choice.

In modern society control over one's own identity is crucial. People can steal your identity and pass themselves off as you, or they may simply use your identity to gain access to your personal information, records and data. Your sense of self, of your security, of even your ability to maintain relationships and intimacies by controlling who can know about you, depends on control of your identity. Retaining control over your identity is something you need to be able to do and the government needs to be able to ensure that you can do.

There are those who will say that the whole notion of genetic privacy is absurd. After all, your DNA can be pulled off a glass from which you have sipped, a cigarette you smoked, hair in a shower or anywhere else you might leave behind your sweat, spit, semen or dead skin[看这句话就像看侦探小说一样。。。其实DNA无处不在啊。。。不过汗液里是否有DNA这点我还要去考证一下。。。]. But the ready availability of your DNA does not mean that it is sound public policy to simply make access to it a freefire zone for which there are no penalties for those who peek without permission. The law can and should still seek to ensure privacy and make it clear what the penalties will be for non-consensual未经同意DNA sampling or use.

Now it is true that some research with DNA can be done without identifying the source. Even in these instances you should still have an absolute assurance that no one will reconnect your identity to such data without your assent.

In addition to protecting your identity, it is important that you control your DNA in a world in which you might well suffer adverse consequences were others able to access and analyse your genome at their leisure or pleasure. Your prospective boss could decide that you are not the best person for a job, basing his decision on your genetic risk of suffering a mental illness or debilitating disease three or four decades hence. Your health or life insurer might be jacking up your rates or simply drop you out of a plan because of your risk profile. And admission to college or even to a national security position might well be compromised by an unfavourable risk profile. Remember we are talking risk as the basis of penalties and discrimination, not actual events. Until societies legislate for adequate protections against risk discrimination, you are your own best guardian of your DNA.[我感觉要在法制上健全还是有难度的。。。]

There are plenty of reasons for others to want to access your genes. Some of these are lofty, useful and admirable. Others are not. Unless something can be done to minimise the latter, the case for genetic privacy is quite strong.
整篇文章作者似乎都以一个假设来论述的，就是在法制保障的情况下，你是你自己DNA用处的决定者，可是要做到这点何其难啊！！！又，这篇文章争论的力度不够，看起来不是很有意思。。。个人意见~

[s1]sexual activity that is not considered acceptable

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The opposition's opening remarks

Mar 24th 2009 | Professor J. Craig Venter  

As we progress from the first human genome to sequence hundreds, then thousands and then millions of individual genomes, the value for medicine and humanity will only come from the availability and analysis of comprehensive, public databases containing all these genome sequences along with as complete as possible phenotype表型 descriptions of the individuals. All of us will benefit the most by sharing our information with the rest of humanity.

In this world of instant internet, Facebook and Twitter, access to information about seemingly everything and everyone, the idea that we can keep anything completely confidential[s1] is becoming as antiquated as the typewriter. Today, in addition to my complete human genome, that of Jim Watson and some others, medical and genetic information is also readily shared between people on genetic social networking companies who provide gene scans for paying customers. It was my decision to disclose my genome and all that it holds, as it was Jim Watson's and presumably all those others who chat online about their disease risks and ethno-geographic heritage. So while we all have a right to disclose or not to disclose, we have to move on from the equally antiquated notion that genetic information is somehow sacred, to be hidden and protected at all costs. If we ever hope to gain medical value from human genetic information for preventing and treating disease, we have to understand what it can tell us and what it cannot. And most of all we have to stop fearing our DNA.你的DNA不再是你的秘密，你应该与大众分享。。。作者的观点

When we look at our not so distant past it is easy to understand how the idea of the anonymity and protection of research subjects came to pass. The supposed science-based eugenics movement, the human experiment atrocities暴行of the Nazis and the Tuskegee syphilis梅毒research debacle are just a few examples that prove that we as a society do not have a very good track record on the research front. So naturally when the idea first arose of decoding our human genome, the complete set of genetic material from which all human life springs, it was met largely with fear, including concern of how to adequately protect those involved as DNA donors.

Notions about genetics at the time were based on myth, superstition迷信, misunderstanding, misinformation, misuse, fear, over-interpretation, abuse and overall ignorance propagated by the public, the press and—most surprisingly—even some in the scientific community.这段话可以记一记，讲了公众对基因的各种畏惧之情。可以扯到媒体传播上的~

In the 1980s the state of genetic science was not very advanced and the limited tools available led to a very narrow view of human genetics. The only disease-gene associations made then were the rare cases in which changes in single genes in the genetic code could be linked to a disease. Examples include sickle cell anemia, Huntington's disease and cystic fibrosis囊性纤维化. As a result, most began to think that there would be one gene for each human trait and disease, and that we were largely subject to genetic determinism遗传决定论(you are what your genes say you are). An unfortunate slang developed in which people were described as having the "breast cancer gene" or the "cystic fibrosis gene" (instead of the precise way of describing that a mutation in the chloride ion channel associated with cystic fibrosis). In short, people learned that genetics could all be compared with a high-stakes lottery where you either drew the terrible gene that gave you the horrible disease or you got lucky and did not. The notion of applying probability statistics to human genetic outcomes did reach the public.
Today, the science has come a long way有很大进步since those early days and we now know that there are many genetic changes in many genes associated with genetically inherited diseases like cancer. We also know that genetics is about probabilities and not yes or no answers. However, the public is, for the most part, still back on what they learned from scientists early on: genes determine life outcomes and so you had better not let anyone know the dirty secrets in your genome.

So talk of sequencing the entire human genome created a sort of "perfect storm" of the colliding research ideals of human subject protection and anonymity. The publicly funded, government version of the human genome project went to extremes to use anonymous DNA donors for sequencing, even throwing out millions of dollars of work and data after at least one donor self-identified his contribution to the research.
In contrast to the public human genome project, my team at Celera很有名的公司吖！！ allowed DNA donors to self-identify but Celera itself was bound by confidentiality. Since I was a donor to the Celera project, I thought that one of the best ways to help dissipate the fears of genetic information being misused, or used against me, was to self-disclose my participation as a DNA donor, thereby showing the world that I was not concerned about having my genome on the internet. My colleague at Celera, a Nobel laureate Hamilton Smith, later disclosed that he too was a DNA donor to the Celera genome sequence. My act of self-disclosure and using my own DNA for the first human genome sequence was extensively discussed and criticised by some at the time, including one of the Celera advisory board members, Art Caplan, who likened比喻 the genome sequence to the tomb of the Unknown Soldier and wanted it to remain anonymous.

It might all now seem like a quaint historical discussion because of the onslaught of genome announcements and genome companies aiding thousands to share their genetic information with friends, family and the public at large详细地. In 2007 my team and I published my complete diploid二倍体 genome sequence. This was followed a year later by Jim Watson disclosing his genome identity and releasing his DNA sequence to the internet. Several others have now followed from various parts of the globe. My institute wrestled with the IRB (Institutional review board) issues of sequencing the genome of a known donor as a break from the anonymous past. Following our effort, George Church, a researcher at Harvard, convinced the IRB there to allow full disclosure of multiple individual genomes as part of his project. He and his team have gone even further by including clinical and phenotype information on the internet along with his partial genome sequences.
As we progress to sequence the huge number of human genomes, the value for medicine and humanity will only come from the availability of comprehensive, public databases with all these genome sequences, along with as complete as possible phenotype descriptions of the individuals. Our human genomes are of sufficient complexity and variability that we need these genomes, with the corresponding phenotype data, to accurately move into the predictive and preventive medicine phase of human existence. The possible irony is that, other than as examples and testimonials of well-known individuals, the actual identity of donors is generally of little value to science. I had the right and the privilege to disclose my genetic code to all and I had the right not to do so. I feel that all humans should have the same right to choose. So while we actually don't need people to step forward and identify themselves as donors and subjects in this research, there is no real need for them to remain anonymous, because there is little to fear and only much to be gained by information sharing.

In the United States the Genetic Information Nondiscrimination Act (GINA) was signed into law in May 2008 after more than a decade of trying to get it through congress. GINA is designed to prohibit health insurers and employers from discriminating against someone on the basis of their genetic information. In order that this protection should be global, other countries should do the same. We are learning more and more all the time about what our genes can tell us about our health and what they still cannot and probably will never tell us.

We have been beginning to see the fruits of our sequencing labours over the last decade but we still have so far to go in understanding our biology. Each and every one of us has a unique genetic code. Understanding our code can have a major impact on our life and health management, particularly in early disease detection and prevention. These advances will only happen with large comprehensive databases of shared information. Your genetic code is important to you, your family members and to the other 6.6 billion of us who are only 1-3% different from you. We will only gain that understanding by sharing our information with the rest of humanity
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[s1]PRIVATE SECRET<confidential information>

misirUID: 2684938

【重头戏】Technology

Information overload
About this debate
Technology users are discovering that the proliferation of information tools, services, and channels makes managing their own personal and professional information increasingly difficult. A growing chorus of voices is sounding the alarm that information overload is diminishing people’s ability be effective. Are there better ways to manage the vast amounts of information assaulting users on a daily basis? What is the right balance between new tools and information streams, on the one hand, and minimizing the impact of information overload on the other? Are people losing their ability to reflect rather than just react?

misirUID: 2684938

Background reading[
A]SURVEY: INFORMATION TECHNOLOGY
Make it simple
The next thing in technology, says Andreas Kluth, is not just big but truly huge: the conquest of complexity
Oct 28th 2004 | From The Economist print edition

“THE computer knows me as its enemy,” says John Maeda. “Everything I touch doesn't work.” Take those “plug-and-play” devices, such as printers and digital cameras, that any personal computer (PC) allegedly recognises automatically as soon as they are plugged into an orifice called a USB port at the back of the PC. Whenever Mr Maeda plugs something in, he says, his PC sends a long and incomprehensible error message from Windows, Microsoft's [url=]ubiquitous[/url][s1] operating system. But he knows from bitter experience that the gist of it is no.

At first glance, Mr Maeda's troubles might not seem very noteworthy. Who has not watched Windows crash and reboot without provocation, downloaded endless anti-virus programs to reclaim a moribund hard disc, fiddled with cables and settings to hook up a printer, and sometimes simply given up? Yet Mr Maeda is not just any old [url=]technophobic[/url][s2] user. He has a master's degree in computer science and a PhD in interface design接口、界面设计, and is currently a professor in computer design at the Massachusetts Institute of Technology (MIT). He is, in short, one of the world's foremost [url=]computer geek[/url][s3] s. Mr Maeda concluded that if he, of all people, cannot master the technology needed to use computers effectively, it is time to declare a crisis. So, earlier this year, he launched a new research initiative called “Simplicity” at the MIT Media Lab. Its mission is to look for ways out of today's mess.

Mr Maeda has plenty of sympathisers. “It is time for us to rise up with a profound demand,” declared the late Michael Dertouzos in his 2001 book, “The Unfinished Revolution”: “Make our computers simpler to use!” Donald Norman, a long-standing advocate of design simplicity, concurs. “Today's technology is intrusive and overbearing. It leaves us with no moments of silence, with less time to ourselves, with a sense of diminished control over our lives,” he writes in his book, “The Invisible Computer”. “People are analogue, not digital; biological, not mechanical. It is time for human-centred technology, a humane technology.”

The information-technology (IT) industry itself is long past denial. Greg Papadopoulos, chief technologist at Sun Microsystems, a maker of powerful corporate computers, says that IT today is “in a state that we should be ashamed of; it's embarrassing.” Ray Lane, a venture capitalist at Kleiner Perkins Caufield & Byers, one of the most prominent technology financiers in Silicon Valley, explains: “Complexity is holding our industry back right now. A lot of what is bought and paid for doesn't get implemented because of complexity. Maybe this is the industry's biggest challenge.” Even Microsoft, which people like Mr Lane identify as a prime culprit, is apologetic. “So far, most people would say that technology has made life more complex,” concedes Chris Capossela, the boss of Microsoft's desktop applications.

The economic costs of IT complexity are hard to quantify but probably exorbitant. The Standish Group, a research outfit that tracks corporate IT purchases, has found that 66% of all IT projects either fail outright or take much longer to install than expected because of their complexity. Among very big IT projects—those costing over $10m apiece—98% fall short.

Gartner, another research firm, uses other proxies for complexity. An average firm's computer networks are down for an unplanned 175 hours a year, calculates Gartner, causing an average loss of over $7m. On top of that, employees waste an average of one week a year struggling with their recalcitrant PCs. And itinerant employees, such as salesmen, incur an extra $4,400 a year in IT costs, says the firm.

Tony Picardi, a [url=]boffin[/url][s4] at IDC, yet another big research firm, comes up with perhaps the most frightening number. When he polled a sample of firms 15 years ago, they were spending 75% of their IT budget on new hardware and software and 25% on fixing the systems that they already had; now that ratio has been reversed—70-80% of IT spending goes on fixing things rather than buying new systems. According to Mr Picardi, this suggests that this year alone IT complexity will cost firms worldwide some $750 billion. Even this, however, does not account for the burden on consumers, whether measured in the cost of call-centres and help desks, in the amount of gadgets and features never used because they are so byzantine, or in sheer frustration.

Why now?
Complaints about complex technology are, of course, nothing new. Arguably, IT has become more complex in each of the 45 years since the integrated circuit made its debut. But a few things have happened in the past three years that now add a greater sense of urgency.

The most obvious change is the IT bust that followed the dotcom商业网站boom of the late 1990s. After a decade of strong growth, the IT industry suddenly started shrinking in 2001 (see chart 1). In early 2000 it accounted for 35% of America's S&P标准普尔500 index; today its share is down to about 15%. “For the past three years, the tech industry's old formula—build it and they come—has no longer worked,” says Pip Coburn, a technology analyst at UBS, an investment bank. For technology vendors, he thinks, this is the sort of trauma that precedes a paradigm shift. Customers no longer demand “hot” technologies, but instead want “cold” technologies, such as integration software, that help them stitch together and simplify the fancy systems they bought during the boom years.

Steven Milunovich, an analyst at Merrill Lynch, another bank, offers a further reason why simplicity is only now becoming a big issue. He argues that the IT industry progresses in 15-year waves. In the first wave, during the 1970s and early 1980s, companies installed big [url=]mainframe[/url][s5] computers; in the second wave, they put in PCs that were hooked up to “server” computers in the basement; and in the third wave, which is breaking now, they are beginning to connect every gadget that employees might use, from hand-held computers to mobile phones, to the internet.

The mainframe era, says Mr Milunovich, was dominated by proprietary technology (above all, IBM's), used mostly to automate the back offices of companies, so the number of people actually working with it was small. In the PC era,[url=]de facto[/url][s6] standards (ie, Microsoft's) ruled, and technology was used for word processors and spreadsheets to make companies' front offices more productive, so the number of people using technology multiplied tenfold. And in the internet era, Mr Milunovich says, [url=]de jure[/url][s7] standards (those agreed on by industry consortia) are taking over, and every single employee will be expected to use technology, resulting in another tenfold increase in numbers. 【这段和前一段都在说明三个时代的变迁】

Moreover, the boundaries between office, car and home will become increasingly blurred and will eventually disappear altogether. In rich countries, virtually the entire population will be expected to be permanently connected to the internet, both as employees and as consumers. This will at last make IT pervasive and ubiquitous无处不在, like electricity or telephones before it, so the emphasis will shift towards making gadgets and networks simple to use.

UBS's Mr Coburn adds a demographic observation. Today, he says, some 70% of the world's population are “analogues”, who are “terrified by technology”, and for whom the pain of technology “is not just the time it takes to figure out new gadgets but the pain of feeling stupid at each moment along the way”. Another 15% are “digital immigrants”, typically thirty-somethings who adopted technology as young adults; and the other 15% are “digital natives”, teenagers and young adults who have never known and cannot imagine life without IM (instant messaging, in case you are an analogue). But a decade from now, Mr Coburn says, virtually the entire population will be digital natives or immigrants, as the ageing analogues convert to avoid social isolation. Once again, the needs of these converts point to a hugely increased demand for simplicity.这里的几个词用得很地道的说~

The question is whether this sort of technology can ever become simple, and if so, how. This survey will analyse the causes of technological complexity both for firms and for consumers, evaluate the main efforts toward simplification by IT and telecom vendors today, and consider what the growing demands for simplicity mean for these industries. A good place to start is in the past.

[s1]existing or being everywhere at the same time : constantly encountered : WIDESPREAD[/url] <a ubiquitous fashion>

[s2]fear or dislike of advanced technology or complex devices and especially computers

[s3]an enthusiast or expert especially in a technological field or activity <computer geek>

[s4]a scientific expert especially : one involved in technological research

[s5]computer with its cabinet and internal circuits also : a large fast computer that can handle multiple tasks concurrently

[s6]especially : being such in effect though not formally recognized <a de facto state of war>

[s7]based on laws or actions of the state <de jure segregation>