How volunteering for an MRI scan changed my life

Discovering a serious problem not only causes shock but can have financial implications.

Sir— I read your news story “Brain-scan ethics come under spotlight” (Nature 433, 185; 2005) with great interest. As a neuroscientist, and being a bit of a ‘neuro-nerd’, I’ve always wanted to observe MRI scans of my own brain, so when the opportunity arose I jumped at the chance to help test a new MRI facility at my university.

As it turns out, I should have thought about the consequences of volunteering more thoroughly.

After the test scans, the manager of the facility informed me that something abnormal had been observed during the procedure. With great trepidation, I looked through the scans and, having taught neuroanatomy previously, I instantly recognised a tumour, roughly the size of a golf ball, in a rather sensitive location near the carotid artery to the left of my brainstem. This came as a huge surprise as I had never been diagnosed with any sort of neurological disorder.

Some would call this a fortunate discovery, and I would normally agree with them. Clearly, knowing you have a brain tumour is better than not knowing, right? The manager of the MRI facility offered to refer me to a local neurosurgeon for further investigation. In a state of shock, I agreed without proper consideration. This decision, I later realized, would have unforeseen financial implications.

At the time, my wife and I were expecting our first child, and we were in the process of reviewing our insurance policies. We had decided to apply for additional insurance to support the family should one of us lose our university position though injury or disease. Just before we submitted these documents, along came this ‘diagnosis’.

The neurosurgeon told me that 5% of operations lead to potential complications after which, in order to save my life, they would have to induce a massive stroke of my entire left-brain. This could leave me in the horrible position of being unable to communicate with my wife, my newborn child or my students. Clearly, this surgery could lead to my losing my job. What should I do about the insurance policy? Revise the application and report these ‘non-clinical’ scans? I decided to be honest (others would say naive) and report the scans, which cost me the policy.

Now I sit in the uneasy position of facing surgery that could cost me and my family everything because I wanted to peep at my own brain. I understand that subject recruitment for research studies can be very difficult and every subject is precious. After my experience, however, I feel that informed consent should clearly include recognizing the possibility that something of medical significance could arise and that this could have an impact on future insurance eligibility.

    Sadly, this is likely to further reduce subject participation in research critical to our understanding of the healthy and diseased brain.

一次核磁共振成像扫描的志愿受试如何改变了我的生活

发现严重疾病不但让人震惊还会

带来经济问题

先生——我饶有兴趣的阅读了你的新闻故事《聚光灯下大脑扫描的伦理问题》(2005年《自然》第433期，第185页)。作为一名有几分书呆子气的神经科学家，我一直想看一下自己大脑的核磁共振成像扫描结果。因此，当这样一次机会来临的时候，我一把抓住，顺便也帮助测试一下我校新到的一套核磁共振成像设备。

后来我才发现，我本该更仔细地考虑一下参与这样一次志愿行动可能带来的后果。

扫描结果出来以后，设备管理员通知我说在扫描过程中发现了一点异常。我战战兢兢地仔仔细细看了一遍扫描结果，由于我以前教过神经解剖学，我一下子就认出了一个肿瘤，大约有高尔夫球那么大，位于通往左脑干的颈动脉旁的敏感区域内。我对此大吃一惊，因为我以前一直没有查出过任何神经疾病。

也许有人会说我运气不错，还能发现一个肿瘤，我也应该会同意这种说法。当然，知道你的脑袋里有一个肿瘤总比不知道要好，难道不是吗？核磁共振成像设备的管理员建议我不妨去当地一位神经外科医生那儿作进一步的检查。震惊之余，我没仔细考虑就同意了。我后来才意识到这个决定将会带来无法预测的经济问题。

当时，我和我妻子正在期待我们第一个孩子的降生。我们当时还检查了我们的保单，并决定再申请一份保险，以便我们当中有人由于受伤或者疾病被迫离开大学时，这个家庭还能维持下去。正当我们要提交这些证明书的时候，这份“诊断书”来了。

神经外科医生说5%的手术会引发并发症。一旦发生，为了让我活命，他们必须对我的整个左脑大动一番干戈。这将让我陷入可怕的困境——不能和我的妻子、我刚出世的孩子以及我的学生交流。无疑，这个手术将使我失业。对保单我该做点什么呢？更改申请表，报告这些“非临床的”扫描结果？我决定做一个诚实的人(别人会说我幼稚)，报告这些扫描结果。我也因此丧失了这份保险。

现在，我因为要面临一次手术而坐立不安，我和我的家庭也许将为此而丧失一切，原因仅仅是因为我想要偷看一下我自己的大脑。我知道为研究招收受试者有时非常困难，每个受试者都来之不易。然而，有了这次经历，我觉得要做出明智的抉择，是否同意参与受试，需要认识到有可能因此而引发的一些医疗后果以及带来的对以后申请保险资格的影响。

    悲哀的是，这很可能会进一步减少研究时受试者的参与，而这对于搞清楚我们正常的和患病的大脑至关重要。■