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BoghumaKabisenTitanji_2012X-_艾滋病研究的道德困惑_
I'd like to share with you the story of one of my patients called Celine. 我想和大家分享 关于我的病人赛琳的故事。
patients:n.接受治疗者,病人;(patient的复数)
Celine is a housewife and lives in a rural district of Cameroon in west Central Africa. 赛琳是一位家庭主妇 生活在非洲中西部喀麦隆的乡下。
housewife:n.家庭主妇; rural:adj.农村的,乡下的;田园的,有乡村风味的; Cameroon:n.喀麦隆(西非国名);
Six years ago, at the time of her HIV diagnosis , she was recruited to participate in the clinical trial which was running in her health district at the time. 六年前,她被诊断患有艾滋病 她被招募参与了某个药品的临床实验 实验刚好在赛琳的围生区进行
HIV:n.艾滋病病毒; diagnosis:n.诊断; recruited:v.招聘,雇佣;招募;(recruit的过去分词和过去式) participate:v.参加;参与; clinical:adj.临床的;诊所的;
When I first met Celine, a little over a year ago, she had gone for 18 months without any antiretroviral therapy , and she was very ill. 一年多以前,我第一次见到赛琳 她当时已经停止治疗超过18个月了 完全停止使用抗逆转录病毒药物(是一类于治疗逆转录病毒,主要HIV感染的药物) 她当时病的很重。
antiretroviral:adj.抗逆转录病毒的,抗后病毒的; therapy:n.治疗,疗法;
She told me that she stopped coming to the clinic when the trial ended because she had no money for the bus fare and was too ill to walk the 35-kilometer distance. 她告诉我,自那临床实验结束后 就再也没去那儿接受过治疗了 因为她负担不起巴士车费 身体也太虚弱 没法走35公里路去诊所
fare:n.车费;饭菜;船费;飞机票价;v.成功(或不成功、更好等);
Now during the clinical trial, she'd been given all her antiretroviral drugs free of charge, and her transportation costs had been covered by the research funds . 在实验进行的时候 她可以获得免费的抗逆转录病毒药物 并可以报销交通费 这些费用统统由实验研究承包。
transportation:n.运输;运输系统;运输工具;流放; funds:n.[会计]资金,现金(fund的复数);基金;v.资助(fund的三单形式);提供资金;
All of these ended once the trial was completed, leaving Celine with no alternatives . 然而这一切都随着实验的结束而结束 只留下当时走投无路的赛琳。
alternatives:n.可供选择的事物;(alternative的复数)
She was unable to tell me the names of the drugs she'd received during the trial, or even what the trial had been about. 她没法告诉我在实验中 试过什么药 甚至也不知道那是个什么实验。
I didn't bother to ask her what the results of the trial were because it seemed obvious to me that she would have no clue . 我没有再追问她实验的结果 因为很明显她是一头雾水的。
bother:v.烦扰,打扰;使…不安;操心,麻烦;n.麻烦;烦恼; obvious:adj.明显的;显著的;平淡无奇的; clue:n.提示;迹象;(纵横填字谜、游戏或问题的)提示词语;v.提示;为…提供线索;
Yet what puzzled me most was Celine had given her informed consent to be a part of this trial, yet she clearly did not understand the implications of being a participant or what would happen to her once the trial had been completed. 然而最令我想不通的是 赛琳曾经签署过参与实验的 同意书,然而她当时肯定不明白 参与临床实验到底意味着什么 实验结束后有会怎样。
puzzled:adj.困惑的;茫然的;搞糊涂的; informed:adj.见多识广的; v.通知; (inform的过去分词和过去式) consent:vi.同意;赞成;答应;n.同意;(意见等的)一致;赞成; implications:n.蕴涵式;暗指,暗示;含蓄,含意;卷入(implication的复数); participant:adj.参与的;有关系的;n.参与者;关系者;
Now, I have shared this story with you as an example of what can happen to participants in the clinical trial when it is poorly conducted . 现在,我跟你们分享的这个故事,是一个真实的 发生在参于实验的人身上的故事 当实验不负责任的结束之后。
participants:n.参与者(participant的复数形式); conducted:v.组织;安排;实施;执行;指挥;带领;引导;(conduct的过去分词和过去式)
Maybe this particular trial yielded exciting results. 也许这个实验会获得一些令人鼓舞的成果。
yielded:v.出产(作物);提供;屈服;让步;放弃;(yield的过去分词和过去式)
Maybe it even got published in a high-profile scientific journal . 也许结果会被发表在某个知名的科学期刊上。
high-profile:adj.高调的;备受瞩目的;知名度高的; scientific:adj.科学的,系统的; journal:n.杂志;日记;日志;(用于报纸名)…报;
Maybe it would inform clinicians around the world on how to improve on the clinical management of HIV patients. 也许它能帮助一些临床医生们 提升他们在艾滋病临床管理的经验。
clinicians:临床医生(clinician的名词复数); improve on:改进;对…加以改良; management:n.管理;管理人员;管理部门;操纵;经营手段;
But it would have done so at a price to hundreds of patients who, like Celine, were left to their own devices once the research had been completed. 可是这些成果都要付如此浩大的代价！ 数百名和赛琳一样的病人 随着实验的结束, 他们失去了所有的帮助。
devices:n.[机][计]设备;[机]装置;[电子]器件(device的复数);
I do not stand here today to suggest in any way that conducting HIV clinical trials in developing countries is bad. 我今天站在这里并非要告诉大家 在发展中国家做 艾滋病临床研究是不对的。
conducting:v.组织;安排;实施;指挥;引导;导游(conduct的现在分词)
On the contrary , clinical trials are extremely useful tools, and are much needed to address the burden of disease in developing countries. 相反,要改善病人状况,它绝对是一种行之有效的方法 而且那些发展中国家也非常需要临床实验来 减轻他们的医疗负担。
On the contrary:正相反; extremely:adv.非常,极其;极端地; burden:n.负担;责任;船的载货量;v.使负担;烦扰;装货于; disease:n.病,[医]疾病;弊病;vt.传染;使…有病;
However, the inequalities that exist between richer countries and developing countries in terms of funding pose a real risk for exploitation , especially in the context of externally-funded research. 然而,我们都知道,一些存在于富国跟穷国之间 的不公平情况,尤其是资金方面 这让研究工作带来剥削的可能 尤其是那些来自外界投资的临床研究。
inequalities:n.[数]不等式;不均等,不平衡;不平坦(inequality的复数形式); funding:n.基金;资金;提供资金;v.为…提供资金;拨款给;(fund的现在分词) pose:v.引起; n.装腔作势; (为画像、拍照等摆的)姿势; exploitation:n.开发,开采;利用;广告推销; especially:adv.尤其;特别;格外;十分; context:n.环境;上下文;来龙去脉;
Sadly enough, the fact remains that a lot of the studies that are conducted in developing countries could never be authorized in the richer countries which fund the research. 让人够难过的,现实告诉我们 很多在发展中国家进行的研究 永远也不会在发达国家得到授权 并且得到投资。
authorized:adj.核准的;v.批准;授权;(authorize的过去式和过去分词)
I'm sure you must be asking yourselves what makes developing countries, especially those in sub-Saharan Africa, so attractive for these HIV clinical trials? 我肯定你一定会问 什么驱使这些发展中国家 特别是那些位于非洲撒哈拉沙漠的国家 被吸引去参与这些艾滋病临床实验？
sub-Saharan:撒哈拉以南地区; attractive:adj.吸引人的;有魅力的;引人注目的;
Well, in order for a clinical trial to generate valid and widely applicable results, they need to be conducted with large numbers of study participants and preferably on a population with a high incidence of new HIV infections . 为了让临床实验获得 人数和复盖率过多而有令人信服的结果 大量的病人会被招募参与实验 这些病人都优先从 艾滋病新感染率很高的地区找来的
generate:v.产生;引起; valid:adj.有效的;有根据的;合法的;正当的; applicable:adj.可适用的;可应用的;合适的; preferably:adv.较好;宁可,宁愿;更适宜; incidence:n.发生率;影响;[光]入射;影响范围; infections:n.传染病;口腔病害(infection复数形式);
Sub-Saharan Africa largely fits this description , with 22 million people living with HIV, an estimated 70 percent of the 30 million people who are infected worldwide . 非洲撒哈拉地区最能符合以上的要求 有2200万人生活在艾滋病的阴霾中 据估算,全世界3000万艾滋病感染人数中, 他们占70%
largely:adv.主要地;大部分;大量地; description:n.说明;形容;描写(文字);类型; estimated:adj.估计的;预计的;估算的; infected:adj.带菌的; v.传染; (infect的过去分词和过去式) worldwide:adj.全世界的;adv.在世界各地;
Also, research within the continent is a lot easier to conduct due to widespread poverty , endemic diseases and inadequate health care systems. 并且,在那里开展研究 还比较其他地区容易, 因为那里充斥着 贫穷,疾病以及不完善的医疗保健体系
continent:n.大陆,洲,陆地;adj.自制的,克制的; widespread:adj.普遍的,广泛的;分布广的; poverty:n.贫困;困难;缺少;低劣; endemic:adj.地方性的;风土的;n.地方病; diseases:n.[医]病(disease的复数);[医]疾病;[植保]病害;疾病种类; inadequate:adj.不充分的,不适当的; health care:n.卫生保健;
A clinical trial that is considered to be potentially beneficial to the population is more likely to be authorized, and in the absence of good health care systems, almost any offer of medical assistance is accepted as better than nothing. 因此,考虑到临床实验 可能会给当地带来帮助 所以研究很容易就会得到授权 由于缺乏完善的医疗保健体系 所以任何的医疗援助都很容易被接受 因为总比什么都没有好
potentially:adv.可能地,潜在地; beneficial:adj.有益的,有利的;可享利益的; in the absence of:缺乏,不存在;无…时,缺少…时;
Even more problematic reasons include lower risk of litigation , less rigorous ethical reviews , and populations that are willing to participate in almost any study that hints at a cure. 而且还有一些有问题的理由,像 负比较少的法律责任 比较低的道德压力 更有大量的病人愿意加入各种类似的研究 这些临床实验都号称能治好他们。
problematic:adj.问题的;有疑问的;不确定的; litigation:n.诉讼;起诉; rigorous:adj.严格的,严厉的;严密的;严酷的; ethical:adj.伦理的;道德的;凭处方出售的;n.处方药; reviews:n.综述; v.回顾; hints:n.暗示,提示(hint的复数形式);v.暗示,示意(hint的单三形式);
As funding for HIV research increases in developing countries and ethical review in richer countries become more strict, you can see why this context becomes very, very attractive. 随着越来越多的艾滋病研究 得到投资并且在发展中国家开展起来 道德审查却在发达国家变得越来越严格 这就是为什么这个话题变得 这么的引人注目。
The high prevalence of HIV drives researchers to conduct research that is sometimes scientifically acceptable but on many levels ethically questionable . 艾滋病的高发病率促使研究员们 作这方面的研究,这在科学研究上是可以接受的 但在很多道德伦理方面就出现疑问
prevalence:n.流行;普遍;广泛; scientifically:adv.系统地;合乎科学地;学问上; acceptable:adj.认同的;可接受的;令人满意的; ethically:adv.伦理上; questionable:adj.可疑的;有问题的;
How then can we ensure that, in our search for the cure, we do not take an unfair advantage of those who are already most affected by the pandemic ? 我们怎么才能保证,在研究治疗的过程中 不会损害那些参与实验而 又在与疾病抗争的病人们的利益？
ensure:vt.保证,确保;使安全; advantage:n.有利条件:优势:优点: pandemic:adj.(疾病等)全国流行的;普遍的;n.流行性疾病;
I invite you to consider four areas I think we can focus on in order to improve the way in which things are done. 我恳请大家考虑下以下这四个方面 为了改善这个现状。
The first of these is informed consent. 首先是要提倡参加者的知情权。
Now, in order for a clinical trial to be considered ethically acceptable, participants must be given the relevant information in a way in which they can understand, and must freely consent to participate in the trial. 时至今日,为了让临床实验 在道德上容易被接受 参与者必须有权获得相关的资料 而且是他们可以理解的 必须专重参加者的参与自由。
relevant:adj.相关的;切题的;中肯的;有重大关系的;有意义的,目的明确的;
This is especially important in developing countries, where a lot of participants consent to research because they believe it is the only way in which they can receive medical care or other benefits. 这在发展中国家尤其重要 因为大量的参与者同意参加研究 他们相信这是他们唯一的机会 得到治疗或者其他方面的帮助。
Consent procedures that are used in richer countries are often inappropriate or ineffective in a lot of developing countries. 然而发达国家那套用来保障知情权的方法 在很多发展中国家 基本上是形同虚设。
procedures:n.程序;规程(procedure的复数); inappropriate:adj.不适当的;不相称的; ineffective:adj.无效的,失效的;不起作用的;
For example, it is counterintuitive to have an illiterate study participant, like Celine, sign a lengthy consent form that they are unable to read, let alone understand. 就拿赛琳来说吧,那简直是荒谬的 让一个没受过教育的参加者 去签一份又长又看不懂的 同意书。
counterintuitive:adj.违反直觉的; illiterate:adj.文盲的;不识字的;没受教育的;n.文盲; lengthy:adj.漫长的,冗长的;啰唆的; let alone:更不必说;听任;不打扰;
Local communities need to be more involved in establishing the criteria for recruiting participants in clinical trials, as well as the incentives for participation . 我们需要更多本地政府的参与 建立一套合理的参与者招募准则 须要提到临床实验,而不仅仅是吸引参与者。
communities:n.社区;社会;团体;共有(community的复数) involved:adj.有关的; v.涉及; (involve的过去式和过去分词) establishing:v.建立;创立;设立;使稳固;(establish的现在分词) criteria:n.标准,条件(criterion的复数); recruiting:v.吸收(新成员);征募(新兵);动员;(recruit的现在分词) as well as:也;和…一样;不但…而且; incentives:n.激励;奖励;诱因(incentive的复数形式);奖励措施; participation:n.参与;分享;参股;
The information in these trials needs to be given to the potential participants in linguistically and culturally acceptable formats. 所有跟实验相关的信息 应该要用参加者的语言和方式 让他们理解。
linguistically:adv.语言的;语言学方面; culturally:adv.从文化角度,文化意义上;在人文学方面;
The second point I would like for you to consider is the standard of care that is provided to participants within any clinical trial. 我要提出的第二点是 我们应该提供治疗的标准 给这些参与临床实验的人。
standard:n.标准;水准;旗;度量衡标准;adj.标准的;合规格的;公认为优秀的; provided:conj.假如; v.提供; (provide的过去分词和过去式)
Now, this is subject to a lot of debate and controversy . 现在,这个话题带有争议性。
debate:n.辩论;争论;考虑;v.辩论;争论;考虑; controversy:n.争论;论战;辩论;
Should the control group in the clinical trial be given the best current treatment which is available anywhere in the world? 参与实验的对照组病人是否也 应该得到顶级的治疗 就像发达国家的病人一样？
treatment:n.治疗;疗法;对待;处理;讨论;
Or should they be given an alternative standard of care, such as the best current treatment available in the country in which the research is being conducted? 或者他们应该被区别对待 只能得到进行实验的国家的那些 所谓的顶级的治疗待遇呢？
Is it fair to evaluate a treatment regimen which may not be affordable or accessible to the study participants once the research has been completed? 我们是否能公正的评价一种 让参与研究的病人们感觉遥不可及的疗法 当这些疗法问世的时候？
evaluate:v.评价;评估;估计; regimen:n.[医]养生法;生活规则;政体;支配; affordable:adj.负担得起的; accessible:adj.易接近的;可进入的;可理解的;
Now, in a situation where the best current treatment is inexpensive and simple to deliver, the answer is straightforward . 此时此刻,我们身处一个顶级医疗 触手可及的国度 答案是明显的。
inexpensive:adj.廉价的;不昂贵的; straightforward:adj.简单的;坦率的;明确的;径直的;adv.直截了当地;坦率地;
However, the best current treatment available anywhere in the world is often very difficult to provide in developing countries. 然而,这些这些在发达国家 触手可及的事情 在发展中国家却是难如登天。
It is important to assess the potential risks and benefits of the standard of care which is to be provided to participants in any clinical trial, and establish one which is relevant for the context of the study and most beneficial for the participants within the study. 我认为在临床实验中对即将提供给 临床病人们的医疗品质 是非常有必要进行风险评估的 这能帮助我们建立一种既不影响实验 又能给予参与实验的病人们最大利益的准则。
assess:vt.评定;估价;对…征税;
That brings us to the third point I want you think about: the ethical review of research. 说到准则,正好谈一下我第三个观点 希望大思考一下临床研究的伦理审查。
An effective system for reviewing the ethical suitability of clinical trials is primordial to safeguard participants within any clinical trial. 一个有效的伦理审查体系 一定是以保护参与者的生命安全为出发点 在临床实验中。
reviewing:v.复查;重新考虑;反思;评论;(review的现在分词) suitability:n.适合;适当;相配; primordial:adj.原始的;根本的;原生的; safeguard:n.[安全]保护;保卫;保护措施;vt.[安全]保护,护卫;
Unfortunately , this is often lacking or inefficient in a lot of developing countries. 不幸的是,这在很多发展中国家 伦理审查根本就是闻所未闻的事情。
Unfortunately:adv.不幸地; inefficient:adj.无效率的,效率低的;无能的;
Local governments need to set up effective systems for reviewing the ethical issues around the clinical trials which are authorized in different developing countries, and they need to do this by setting up ethical review committees that are independent of the government and research sponsors . 本地政府需要建立有效的 临床实验伦理审查体系针对那些 在发展中国家得到授权的实验 并且建立起一个 独立的伦理审查委员会 不受政府和研究赞助人的干扰。
issues:n.重要议题;争论的问题;v.宣布;公布;发出;(issue的第三人称单数和复数) committees:n.委员会,全体委员;(committee的复数) independent of:不依赖…的;不受…支配的; sponsors:n.赞助商;主办单位(sponsor的复数);v.赞助(sponsor的三单形式);主办;倡议;
Public accountability needs to be promoted through transparency and independent review by nongovernmental and international organizations as appropriate. 应该提倡向公众问责的体系 通过非政府组织或国际机构的 公开透明且独立的 伦理审查。
accountability:n.有义务;有责任;可说明性; promoted:v.促进:促销:提升:(promote的过去分词和过去式) transparency:n.透明,透明度;幻灯片;有图案的玻璃; nongovernmental:adj.非政府的;非政治的; organizations:n.组织,构造,有机体(organization的复数);组织机构;
The final point I would like for you to consider tonight is what happens to participants in the clinical trial once the research has been completed. 最后我希望大家想一想 那些临床实验的病人 随着实验的结束会面对怎样的情况。
I think it is absolutely wrong for research to begin in the first place without a clear plan for what would happen to the participants once the trial has ended. 我认为这种 一旦结束就过河拆桥的 医学研究 根本不应该开展。
absolutely:adv.绝对地;完全地; in the first place:首先;起初;
Now, researchers need to make every effort to ensure that an intervention that has been shown to be beneficial during a clinical trial is accessible to the participants of the trial once the trial has been completed. 现在,研究者们应该努力确保 让那些参与实验参的人 能够得到妥善的安排 就像他们在参与实验时那样 即使在实验完成后。
intervention:n.介入;调停;妨碍;
In addition , they should be able to consider the possibility of introducing and maintaining effective treatments in the wider community once the trial ends. 不仅如此,研究完成后,研究者们应该尽力 提供一些可行的疗法 来回馈更多的病人不仅仅是曾经参与的人。
addition:n.添加;[数]加法;增加物; maintaining:n.维护;保养;v.维持;保养;(maintain的现在分词) treatments:n.治疗;疗法;对待;处理;讨论;(treatment的复数) community:n.社区;[生态]群落;共同体;团体;
If, for any reason, they feel that this might not be possible, then I think they should have to ethically justify why the clinical trial should be conducted in the first place. 如果,无论什么原因,他们做不到的话 我认为他们应该从伦理上向社会交代 自己的实验当初可以开展的理由。
justify:v.证明合法;整理版面;替…辩护;
Now, fortunately for Celine, our meeting did not end in my office. 赛琳是幸运的 我们的会面没有在办公室里结束。
I was able to get her enrolled into a free HIV treatment program closer to her home, and with a support group to help her cope . 我帮她加入了一个离家很近 而是免费的艾滋病治疗计划 还有一个支持团体在帮助她对抗病魔。
enrolled:v.(使)加入;注册;登记;(enroll的过去分词和过去式) support group:n.互助小组; cope:v.处理;n.大圆衣;
Her story has a positive ending, but there are thousands of others in similar situations who are much less fortunate. 赛琳的故事总算有一个正面的结果 但还有成千上万像她的病人 就没这么幸运了。
positive:adj.积极的;[数]正的,[医][化学]阳性的;确定的;n.正数;[摄]正片;
Although she may not know this, my encounter with Celine has completely changed the way in which I view HIV clinical trials in developing countries, and made me even more determined to be part of the movement to change the way in which things are done. 赛琳肯定没想到 我们的相遇完全的改变了 我对在发展中国家进行临床实验的看法 并且让我下定决心,成为了改变运动的一部份 希望可以改变这些不公义的状况。
encounter:v.遭遇,邂逅;遇到;n.遭遇,偶然碰见; determined:adj.决定了的:v.决定;(determine的过去分词和过去式)
I believe that every single person listening to me tonight can be part of that change. 我坚信今天晚上 在座的各位也会愿义加入成为我们的一部分。
If you are a researcher, I hold you to a higher standard of moral conscience , to remain ethical in your research, and not compromise human welfare in your search for answers. 如果你是研究员,我请你坚持 用更高的道德标准来要求自己 摸着你的良心做研究 不要为了研究成果而牺牲他人的生命。
moral:n.寓意;品行;教益;adj.道德的;道义上的;道德上的;品行端正的; conscience:n.道德心,良心; compromise:n.妥协;折中;互让;和解;v.妥协;违背(原则);达不到(标准);使陷入危险; welfare:n.福祉;(政府给予的)福利;
If you work for a funding agency or pharmaceutical company, 如果你在资助机构或药品公司工作的话
agency:n.代理,中介;代理处,经销处; pharmaceutical:adj.制药(学)的;n.药物;
I challenge you to hold your employers to fund research that is ethically sound. 我希望你建议你的老板 投资那些讲良心的研究。
employers:n.雇主;雇用者;(employer的复数)
If you come from a developing country like myself, 如果你像我一样来自一个发展中国家
I urge you to hold your government to a more thorough review of the clinical trials which are authorized in your country. 我渴望你能敦促你的政府 更加严谨的审查那些在你的国家 得到授权的临床实验。
thorough:adj.彻底的;十分的;周密的;
Yes, there is a need for us to find a cure for HIV, to find an effective vaccine for malaria , to find a diagnostic tool that works for T.B., but I believe that we owe it to those who willingly 的确,我们需要可以治愈艾滋病的药物 需要更有效的疟疾疫苗 需要能检测结核病菌的机器 但是我认为我们应该更人道的
vaccine:n.疫苗;牛痘苗;adj.疫苗的;牛痘的; malaria:n.[内科]疟疾;瘴气; diagnostic:adj.诊断的;特征的;n.诊断法;诊断结论; owe:v.归功于;欠(债);欠(账);欠(情) willingly:adv.欣然地;愿意地,乐意地;
and selflessly consent to participate in these clinical trials to do this in a humane way. 对待那些无私、自愿参与 临床试验的参加者。
selflessly:adv.无私地;忘我地; humane:adj.仁慈的,人道的;高尚的;
Thank you. 谢谢大家。