2007年8月31日 人有病，看基因？

你的感情是否容易受到伤害？你是否觉得在嘈杂的环境中难以进行交谈？你的母亲是否健在？你一般在头部哪一侧使用手机？

Are your feelings easily hurt? Do you find it difficult to follow a conversation if there is background noise? Is your mother still alive? On what side of the head do you usually use a mobile phone?

以上只是英国历史上最大规模、最为雄心勃勃的健康研究中的部分问题。这次调查研究的目的，是为了探求一些特定基因、生活方式和健康状况之间的关系。

These are just some of the questions being asked as part of the UK’s largest and most ambitious health study looking at the relationship between certain genes, lifestyles and health.

由英国政府发起成立的英国生物库(UK Biobank)作为这次调查的执行者，计划在全国40至69岁人群中收集50万份DNA样本。

The study is being carried out by the UK Biobank, a government initiative, which plans to collect DNA samples from 500,000 people aged between 40 and 69 across the UK.

大规模搜集基因信息样本、生活方式选择和血缘数据，目的是为了提高对一些遗传类疾病致病基因的理解，包括癌症、心脏病、糖尿病和一些特定的精神疾病。

Collecting large sample groups of genetic information, together with data on lifestyle choices and genealogy, is aimed at enhancing the understanding of the genetic causes of hereditary diseases such as cancer, heart disease, diabetes and certain mental problems.

这个项目的志愿者招募活动已经在今春启动，目前已经有约1万人在全国各地的检测中心捐献了40到50毫升血样和尿样。

Recruitment for the project started in spring and so far about 10,000 people have donated 40ml-50ml of blood and urine in assessment centres round the country.

英国生物库已经收到来自Wellcome Trust、英国医学研究理事会(Medical Research Council)、英国卫生部(Department of Health)和苏格兰行政院(Scottish Executive)的6100万英镑资金。

The initiative has received ￡61m in funding from the Wellcome Trust, the Medical Research Council, the Department of Health and the Scottish Executive.

冰岛曾展开过一个类似的项目。该国的30万人口具有异常纯种的DNA，其直接原因就是该国在地理上是一个孤岛。而这种高度相似的基因库也就成了研究遗传类疾病的无价之宝。

A similar project was carried out in Iceland, where the 300,000 population has unusually homogenous DNA. The compressed gene pool is a direct result of the country’s geographical isolation, making it an invaluable resource for studying inherited diseases.

冰岛有超过半数的人口捐献了DNA或详细的医疗记录。在上世纪90年代末，冰岛成为世界上第一个向生物科技公司出售全国人口基因代码使用权的国家。

More than half of Iceland’s population has donated DNA or detailed medical records and at the end of the past decade Iceland became the first country in the world to sell the rights to the entire population’s genetic code to a biotechnology company.

英国这个项目的支持者希望，未来，医生将能够根据一个人的基因特性，精准确定他患有某种特定疾病的风险。

Supporters of the UK project hope that in future doctors will be able accurately to pinpoint a person’s risk of developing a particular disease, based on their genetic predisposition.

英国生物库的首席调查员罗里?柯林斯教授(Rory Collins)表示：“在未来的10年、20年或30年，研究员将可以研究疾病的成因，并找出治疗和预防的方法。”

Rory Collins, UK Biobank’s principal investigator, says: “Researchers over the next 10, 20 or 30 years can study the causes of disease and identify ways to treat and prevent it.”

此次的英国项目将保留具名档案。志愿者必须填写一份详细的调查表，捐献血样和尿样，并提供自己的名字、住址、性别、国民健康服务号码、出生日期和常用医生的信息。

The UK project will hold named records. Volunteers must fill out an extensive questionnaire, give blood and urine samples and provide their name, address, sex, National Health Service number, date of birth and general practitioner.

但是在信息库中存储详细的血缘、医疗和基因资料的做法引来了争议。批评人士称，这个项目是不道德的，且有可能被滥用，并存在严重的隐私问题。

But storing detailed genealogical, medical and genetic material in a database is proving controversial. Critics say the project is unethical and open to abuse, and raises serious privacy issues.

非营利性政策研究公司GeneWatch UK的海伦?华莱士(Helen Wallace)表示：“隐私方面的一个主要问题是，根据目前的法律，如果警方能够成功说明这事关公众利益，那么，他们将可以接触到这个数据库。”

Helen Wallace, director of GeneWatch UK, a not-for-profit policy research company, says: “One major privacy concern is that under current law the police can seek access to the database if they can successfully argue it is in the public interest.

“这里还有一个关于保险公司和雇主的长期问题。如果我们开发出一种方法，可以鉴别出那些存在高基因风险人群，保险公司和雇主将会对这类信息非常感兴趣。”

“There is also a longer-term concern about insurers and employers. If we can develop a way of identifying those at high genetic risk the likes of insurance companies and employers will be very interested to get their hands on this information.”

柯林斯教授表示，他“非常反对”出于这些目的使用这类资源，并将“竭力”抗争，以避免这类情况的发生。

Prof Collins said he was “very opposed” to the resources being used for such purposes and would fight “vigorously” to prevent it.

“基因歧视”这个概念目前还属于科幻小说的范畴。电影《千钧一发》（Gattaca，又名《变种异煞》）对此类情况进行了探讨。在片中，一个人在出生时即对预期寿命和易患病程度进行评测，社会则据此予以歧视对待。

The concept of “genetic discrimination” currently lies in the realm of science fiction. It was explored in the film Gattaca, in which life expectancy and susceptibility to disease are ascertained at birth and society discriminates on that basis.

英国生物库的反对者相信，基因歧视是按照基金对人们进行分类的自然结果，并呼吁制定相关立法。

Opponents of the UK Biobank believe genetic discrimination is a logical consequence of classifying people according to their genes and are calling for legislation to be introduced.

英国生物库是一个公共实体，但根据现有法律，包括外国研究人员和研究组织在内的机构可以获得这次调查的数据，并对自己的发现（包括与某种疾病相关的基因）申请知识产权。

The Biobank is a public entity but under current law companies – including foreign researchers and organisations – can gain access to the research and claim intellectual property rights on their findings including genes they link with particular diseases.

柯林斯教授表示：“我们正在建设一个有助于改善健康的资源，其中包括与学术和商业研究人员合作。目前已经越来越难区分纯学术研究和纯商业研究。”

Prof Collins says: “We are building a resource to help improve health and that includes collaborating with academia and commercial researchers. It is increasingly difficult to discriminate between pure academic and pure commercial research.”

华莱士表示：“这非常具有争议性：一家公司是否可以拥有生命信息的知识产权，还是应该对公众开放这些信息。”她补充说：“此外，基因研究尚未取得期待中的结果。基因差异在普通疾病中的作用，并非像开始想象的那样重要。所以，英国生物库能否根据DNA判断谁有患癌症和心脏病的风险，这一点值得怀疑。”

Ms Wallace says: “This is highly controversial: whether a company should be able to own information about life, or whether it should be publicly available.” She adds: “Furthermore, genetic research has not been delivering the expected results. Genetic differences are turning out to be less important in common diseases than initially thought. So the idea that the Biobank will work out who is at risk of cancer and heart disease based on DNA is questionable.”

但是研究机构和制药公司对生物库行业已表现出巨大的兴趣。生物库的合作伙伴和赞助商包括葛兰素史克(GlaxoSmithKline)、阿斯利康(AstraZeneca)和默克(Merck)。

But research organisations and pharmaceutical companies have shown great interest in the biobanking industry. Partners and sponsors include GlaxoSmithKline, AstraZeneca and Merck.

柯林斯教授强调，参与者的动力来自他们的无私奉献。他表示：“参加这个项目没有任何回报。这个项目没有反馈，也不是一个健康检查。人们的付出是这个项目的所有。”

Prof Collins stresses that altruism alone motivates participants. He says: “There is nothing in it for those who take part. There is no feedback and this is not a health check. It is simply about people giving.”