☆☆四星级☆☆Economist Debate阅读写作分析----The ethics of DNA databasing

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☆☆四星级☆☆Economist Debate阅读写作分析----The ethics of DNA databasing

前言 ================================= 结构 1# About This Debate & 介绍 2# 3# 4# 5# 6# 7# 8# 9# 10# 11# 12# 13# 14# 15# ===============

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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. This information could have great medical value, en masse, but might be abused, (科技类\社会类\伦理类话题)ad hominem, 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 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?

Representing the sides

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Defending the motion

Professor Arthur Caplan   

Emmanuel and Robert Hart Professor of Bioethics and Director, Centre for Bioethics, Penn University

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 relationship? Well then, any children who resulted from your hanky-panky might legitimately want access to your DNA to establish paternity or maternity.

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Against the motion

Professor J. Craig Venter   

Founder and president of the J. Craig Venter Institute and founder and CEO of Synthetic Genomic

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 descriptions of the individuals.

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The moderator's opening remarks

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.（为什么DNA受到人们的关注？） This information could have great medical value, en masse, but might be abused, ad hominem, by insurers, employers, politicians and civil servants.（可能带来的各种结果）
Some countries are building up DNA databases, initially using the excuse that these are for the identification and prosecution of criminals, but also including the unprosecuted and the acquitted（结果的具体表现）. how do you balance private and public interests?（争议的关键）

Any sufficiently advanced technology is indistinguishable from magic（科学不同于魔法）. 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.

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.（问题所在）

it is the individual who is best placed to judge what will harm him.

The proposer's opening remarks

基因检测的重要性

1, Have you ever had sexual relations outside a single, monogamous relationship? Well then, any children who resulted from your hanky-panky might legitimately want access to your DNA to establish paternity or maternity.

2,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.

3,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.

4,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.

5,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 company, insurance company and national immigration service.

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.

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.（关于调查你的DNA的人）

Those who wish to have your DNA, 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. 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 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.

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.

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The opposition's opening remarks

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 （显型）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 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.

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 of the Nazis and the Tuskegee syphilis 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, 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.

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. 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 (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.【发展史】

Today, the science has come a long way 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 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, （哈哈，告诉别人你是捐赠人）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 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（冲击） of genome announcements and genome companies aiding thousands to share their genetic information with friends, family and the public at large. In 2007 my team and I published my complete diploid 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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Comments

Those with genetic diseases will have to wait until the paranoia about one's DNA fingerprints subsides. Perhaps we should all wear gloves so that our fingerprints do not fall into the wrong hands. My fingerprints are already in the government's hands for 50 years due to my working in the defence industry long ago in my early career and I know of no violations to my privacy. Two of my friends have Parkinson's disease and so genetic study of the disease should be deferred until the 62% majority believes that the rareness of a violation is a very small percentage, perhaps zero would suffice. Oh well, letting a few hundred or thousand or million die is not as important as one's concerns about a potential corruption of a database. I reget that the human race is so wary of Science that such risks may not be taken.

The potential damage caused by abuse of DNA data is of several orders of magnitude greater then anything I have been subjected to through the abuse of my financial data.

Again may I suggest that we USE THE DATA FROM THE DECEASED! Privacy, to many of us is an essential component of life, liberty and the pursuit of happiness. May I suggest that these geniuses in science put their collective heads together and come up with a privacy solution other then ..."trust us!" Because, right now -- "WE DON'T!"

For protecting and securing my data, science and technology is awarded an F-. Now you want to digitize my being? No way Jose! The potential damage caused by abuse of DNA data is of several orders of magnitude greater then anything I have been subjected to through the abuse of my financial data.

All the people in the world are relevant. And most of our DNA sequences are the same. Now most people think that not only their sequences are their bussiness, but also their life are nobody's bussiness. I do think such attitute is right.

Dear Sir, Just to clarify my position, I am not opposed on the basis of data security and identity protection since it is not clear that naming the dna as mine is a relevant part of the aquisition and storage process. I object on the grounds that it is my DNA and my choice for my own personal reasons just like my choice not to be an organ donor. Aren't research lines in modern medicine swirling around stem cells, etc, for cures? What does that have to do with DNA databases? I have not been convinced that this project will benefit society physically or ethically. I quite seriously doubt that DNA data bases will provide universably usable information; it will just generate a lot of information because somebody can. Another questionably managed set of information.

as it's obvious that some people don't have the free will to respond to changes in the technology and the law.

it is the risks we take that generate our knowledge , it is the probability of science that make us advance ,, our fears may come true some day but when this occur , science purity will purify all of that , i think we must not wait only because of our fears ,,

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The result

So the results are in, and the motion is carried by a majority of about three to two. There has been a small swing towards Dr Venter's position over the course of the debate, but whether a statistician would deem it significant is questionable. Strongly argued as their positions were, then, neither Dr Caplan nor Dr Venter seems to have swayed the argument much.

That is not, perhaps, surprising. Both positions depended in the end on speculation rather than knowledge, and thus on gut instinct rather than rational persuasion. Dr Venter speculates about a world in which processing vast amounts of genetic data will lead to an understanding of, and a cure for, diseases. That is a likely outcome, but not a certain one, at least as far as the cures are concerned. Conversely, Dr Caplan's position depends on there being things in a person's DNA that can, in some way or another, be used against him. Again, that is likely. But whether most people will have things they would rather keep private, and how serious the risks of those things being abused are, remain hidden in the vagaries of the future. Perhaps, then, by voting with Dr Caplan, readers are merely exercising a sensible caution. They are saying "no" because "no" is more easily changed to "yes" than "yes" is to "no".

One thing that was clear, however, as I mentioned earlier, is that the debate would have been irrelevant in a world lacking vast computing power and near instant communications. Dr Venter's desideratum of crunching everybody's DNA sequences could not be conceived of without the existence of supercomputers. Similarly, Dr Caplan's worries about privacy would be much less concerning if the data were held on paper files in locked filing cabinets rather than in an electronic form that can be passed who knows where at the click of a mouse—or left carelessly on a train by a junior civil servant.

In the short term, then, Dr Caplan and caution have won the day. But as our guest speaker, David Blunkett observed, "Times change; people's perceptions of what is and isn't acceptable change." He might have added that people themselves change; those who have been born with a technology as part of the infrastructure(下部结构，基础) that surrounds them may accept its ramifications more easily than do those who feel it has been thrust upon them without their consent, and the former will inevitably come to outnumber the latter. If there are no horror stories of carelessness or mendacity over the next few years, then people may stop fearing DNA databases, and even welcome them, as Dr Venter hopes. If abuses come to light, though, Dr Caplan's caution and the audience's vote will have been well justified.