The pub is a home promising lively discussion and an ideal place to dwell on the important issues in life. Where better to go on a Thursday night in mid-February to debate the ethics and use of genetic testing.
‘Will genomic data be used or abused?’ was a debate organized by the charity遗传联盟英国，一个代表180多名患者组的伞组织支持受遗传状况影响的组织。活动是GenomeSeqWeek, a week of events to mark the launch of their Patient Charter,‘Genome sequencing: What do patients think?’并增加有关基因组测序主题的公众对话。
The debate was chaired by the charity’s director, Alastair Kent OBE, and was contributed to by Dr Beth Thompson, Policy Advisor at the Wellcome Trust, and Professor Nazneen Rahman, Head of the Division of Genetics and Epidemiology at The Institute of Cancer Research.
The 100,000 Genomes Project
2014年的圣诞节时间左右宣布国家卫生服务局将领导交付gthe 100,000 Genomes Project, an initiative that will transform diagnosis and treatment for patients with cancer, rare diseases and infectious diseases.
“The project has the potential to transform the future of healthcare. It could improve the prediction and prevention of disease, enable new and more precise diagnostic tests, and allow personalisation of drugs and other treatments to specific genetic variants.”
Beginning soon, the 100,000 Genomes Project is the first to sequence whole genomes on this scale, but raises ethical issues that need to be discussed in consultation with both patients and the public. For example, an individual could have their genome sequenced in the hope of receiving a diagnosis for their condition, but at the same time could unexpectedly find out something else about their health.
还引起了人们对是否有如此多的有关个人信息的信息以及谁能够访问序列数据的担忧。所有这些问题都使我们质疑遗传数据实际上与其他类型的健康数据有什么不同，以及是否应该给予特殊地位。
诊断领域的进步意味着法律需要与之现代化。贝丝解释说：“对健康和遗传数据进行了敏感的处理，构成了有关如何使用数据的法律。”尽管贝丝承认欧盟框架的变化令人担忧，但由于法律目前正在修订，她很乐观。
你不想知道吗？
In the context of ‘do I or don’t I’, ultimately it is your choice. “One should think along the lines that genome sequencing is basically just another test for diagnosis,” stated Nazneen, “You get specific information as well as the extras. It’s the extra material that we need to think about.”
Nazneen指的是基因组测序可以揭示基因首先揭示其他疾病的基因的情况。尽管人群是否想知道，但纳兹恩（Nazneen）确认，如果医生认为这一发现是临床相关的，那么纳兹恩（Nazneen）确认将始终告知患者，因为“我们作为健康从业者的整体目标是健康的社会。”然而，我们仍需要考虑的不确定的临床意义的不确定的结果。
应该考虑基因组测序基本上只是诊断的另一种测试。
Professor Nazneen Rahman
Institute of Cancer Research
无论您愿意是否愿意进行基因组测序，通常都取决于您当前的健康状况。如果您健康，您就不会感到不需要，因为“测试的预测能力实际上是零，” Nazneen解释说。但是，另一个患有遗传状况的人或患有癌症家族史的人可能会考虑这一点，因为他们担心这种病可以传给子孙后代。
The three debaters warned about companies such as23andme，他们提供基因测试的费用为125英镑，可以在线订购并直接发布到您的家中。您会收到有趣的信息，但是在英国，这纯粹基于祖先，而不是与疾病预测和预防有关的医学信息。
Where do you draw the line?
活动与会者担心保险公司和人们的身份被盗。在决定是否测序您的基因组之前，需要了解保险和健康的困惑。
Alastair reassured us that you don’t have to declare your results, if you have a predictive genetic test, because there’s no guarantee that you’ll develop the condition. It only shows your potential risk.
However, the one exception is the predictive test for Huntington’s disease. If you carry the gene, you’ll definitely develop the condition. Consequently, you need to tell insurance companies, if you are taking out a life insurance policy of over £500,000.
In terms of stealing your identity, there are far easier means to do so. Just think of all the data floating around on the internet.
Do we want to know our future?
进行基因组测序是个人决定。这里没有正确或错误的决定：这仅取决于您的生活哲学。我们都知道如何过健康的生活；然而，我们当中有多少人遵循完美的政权？
Some felt that with the genome sequenced our fate will be decided, and were against having that dictate how we live our lives. But you need to consider that the interaction between genes and environmental factors limits the degree of certainty, so you can’t ever by sure if you’ll get the disease or not.
另一方面，有希望。您有机会改变自己的生活方式，做出更健康的选择，并且可以采取预防措施延长寿命。
Would you share your data for the ‘good of science’?
More data means more knowledge, and to aid scientific progress it is important to share. Only by sharing our data can we transform the way medical research is conducted. This includes commercial companies because they can use the data to invest in the research, development and manufacture of new drugs and diagnostic tests.
The genomic revolution has started
基因组测序最终将成为现有健康框架的一部分。贝丝说，我们需要提高对如何使用技术以及如何在医疗保健中使用信息的理解，因为“成本需要合理”。
这只是进行对话的开始，因为道德和社会挑战将会增长。阿拉斯泰尔（Alastair）与“遗传革命已经开始”结束了整个夜晚。我们站在即将爆发的火山的顶部。问题是我们将如何与之互动？”
注释