If someone found something weird going on your brain, would you want them to tell you about it?
Researchers who do brain scans on subjects as part of their research sometimes find abnormalities in their subjects’ brains (this is called an “incidental finding”), and they don’t know how to interpret it mostly because those researchers are usually not doctors who are trained to do diagnosis using those images from brain scans. An incidental finding could mean that the subject has a problem that could get much worse if nothing was done about it. If the researchers tell them about it, the subject might find do further check-ups, and prevent a much bigger problem. But more often than not, there is actually nothing wrong with them. In that case, the subject could waste a bunch of time and money to do further tests while worrying unnecessarily. Because informing subjects about incidental findings in them is most likely not going to benefit them, researchers are not sure whether to tell the subject or not, and if they do, how they should do so and whether they should discuss with the subject before the scan has taken place.
But I think that even if the subjects end up worrying unnecessarily and going for tests that are not beneficial, it is not the researchers’ fault for telling them about the incidental finding. As long as the subjects have the right statistics and follow the right line of reasoning, they themselves would be the ones in the best position to know how to act upon the information they obtain about incidental findings on them, and the researchers should give them the information to help the subjects make the best decision that they can.
It would be unreasonable for a subject who has been harmed or inconvenienced from the further tests to blame the researcher who told him that there was something in his brain, because the decision to go for further tests was ultimately his own. In fact, most subjects choose not to go for further check-ups, and some of other subjects who chose to go for further check-ups did benefit from them.
Out of one hundred people with an incidental finding, only one of them actually has a problem that would develop into something worse. How one would react to this statistic, though, varies from person to person –some people might be more risk-averse, and some people might be well able to afford the time and money for further check-ups. The same one-in-hundred wouldn’t be perceived the same way by everyone, and the action in the subject’s best interest would vary.
Even though informing the subjects about incidental findings can potentially cause them to make choices that are, from a third person point of view, not in their best interests, the researchers are not responsible for the inconvenience or harm to the subjects for choosing the path that they might later regret, and therefore, neither should they withhold information from the subjects and take it upon themselves to decide what would be in their best interests.
Sources:
Medical Research Images Frequently Reveal Unrelated Abnormalities in Study Subjects
Scientific American, Katherine Harmon, 28 Sep 2010
Scientific American, Katherine Harmon, 28 Sep 2010
Incidental Findings in Imaging Research: Evaluating Incidence, Benefit, and Burden
Archives of Internal Medicine, Nicholas M Orme et al, 27 Sep 2010
Archives of Internal Medicine, Nicholas M Orme et al, 27 Sep 2010
2 comments:
To answer your question, if someone incidentally found something wrong with my brain, yes I would personally want them to tell me about it. Answering whether or not the researcher is obliged to inform the subject, however, requires a bit more thought. First of all, I think it is important to point out that we are talking about researchers and volunteer subjects, not doctors and patients. Under the modern Hippocratic Oath doctors are required to “prevent disease whenever [they] can, for prevention is preferable to cure.” Therefore, doctors are obliged to tell their patients in order to prevent illness or strike it at its roots because it is a part of the job description.
Again, though, we’re talking about researchers and volunteers. Speaking strictly in terms of the job description, researchers are not responsible for informing the volunteers of the incidental findings because that is not a part of the agreement they signed prior to the commencement of the research, assuming said incidental finding does not interfere with the research being conducted. In the case that it does, however, I think the researcher is obligated to tell the volunteer subject because it is a complication, and medical research requires that the volunteer is always informed of complications and given the option to pull out. That is simply a part of the agreement.
That said, I think we have a moral obligation to inform someone if something is wrong with them and they are unaware. Take this imperfect and inconsequential example: someone has something stuck in his or her teeth. Do you tell them or let them walk around unknowingly embarrassing themselves? You tell them! In that example the only consequence of not telling them is humiliation, which is why it’s imperfect. In the case of researchers incidentally finding something wrong with a volunteer subject much more is at risk. Just the risk is enough to justify telling them. Whether or not the volunteer acts on the researchers words is not really the researcher’s concern. Also, the argument that the subject finding that the incidental discovery was nothing to worry about makes the stress, money, and time spent checking it out was a waste is flawed. Let’s say someone finds something is wrong with him or her. This indubitably results in stress, so isn’t it worth it to invest in one’s health and alleviate that stress? Besides, if something is wrong, more money and time is going to inevitably be devoted to curing the illness. So finding out about a terminal illness is not necessary to make it all “worth it,” and the researcher should go ahead and tell the subject.
http://www.pbs.org/wgbh/nova/doctors/oath_modern.html
I am honestly incredibly surprised that there was any sort of debate about the responsibility of medical researchers to share with the patient complete information about there findings--incidental or not. I have always just assumed that the doctor or researcher has the responsibility to give their patent as much information about their body that is available to them.
Yes, the numbers and statistics may make it seem that that informing subjects isn't necessary because the newly arisen problem may have no effect on them, but what about when these incidental findings are actually crucial? Who's responsibility is it now?
I can speak from personal experience on this topic, and because of this I can truly say that a doctor or researcher has the complete responsibility to disclose all information to their patients. During the summer before my senior year of high school I injured my hip by playing soccer. Being a goalie, I spent a lot of my time hitting the ground, so when I began to feel a persistent bruise on my side, I thought nothing of it. But, the pain persisted, and heading into my senior soccer season, I did not want to take the risk of further injuring myself. So, my mom made an appointment for me and I had a CAT scan done on the left side of my body. When I went in for a second follow-up appointment, the doctor informed that he had both good and bad news regarding the images of the CAT scan. He had reassuring news about my hip, the pain was a result of some incredibly deep bruising that was even possible to see on the scan and that as long as I continued to ice regularly it would begin to heal on its own. But he then told me that they were going to need to do further imaging because they had noticed an irregularity on the CAT scan. So, after many more visits for scans, tests, check-ups, and ultrasounds, the doctors concluded that I needed to have a fairly standard surgical procedure done to remove a cyst in my lower abdomen.
While yes, the frequent visits to the hospital for the next couple of weeks after the first CAT scan got slightly annoying, and I often made jokes that it would've been less of a pain had I not known about the cyst--but what if they hadn't told me? What if the person reading the first images had concluded that this new incidental finding wasn't important? Would it have honestly been fair to put my health on the line because statistics have shown that a lot of these findings are meaningless? Absolutely not. I truly am incredibly lucky that the cyst happened to be on the same side as my injured hip, because then I was able to take the necessary steps to prevent the possibility of it getting infected, bursting, or at worse becoming cancerous.
So to relate back to the original post, I agree with you, Yak. Researchers should be required to report all incidental findings, and it is not there responsibility to decide what is best for their patient without consulting with them.
It is important that researchers report their findings in their entirety, and then leave it up to the patient and doctors to weigh the risks and benefits of the situation and then decide how to proceed from there.
And in response to the argument about the possible waste of money for further tests, well, society as a whole...
Well, I guess thats just another discussion for another time.
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