The ethical grey zone of research progress
I was just reading a fascinating article in the BBC health news section (http://www.bbc.co.uk/news/health-18796309). This article was talking about the hereditary form of Alzheimer’s disease and how we may now be able to test for early brain/spinal changes that occur up to 25 years before the disease actually manifests clinically. First of all, this is amazing and kudos to the researchers for their hard work in studying this condition. Second though, it made me think of the ethical and far-reaching implications of our research – what impact does finding out that you will likely develop Alzheimer’s have on you? This is particularly relevant because there is no evidence for any treatments being able to prevent the onset of Alzheimer’s. It seems that early treatment may help delay the onset or progression of the disease, but you will still get it.
In the case of this article, because they are studying hereditary Alzheimer’s I think there becomes less of an ethical issue because the people that they are studying already know that they have a 50% chance of having a mutation that will cause them to develop Alzheimer’s. However, the researchers are interested in determining if their findings also apply to non-hereditary Alzheimer’s and I think this highlights an ethical grey zone. What do we do if we find something that is a decidedly grim prognosis and we don’t have any treatment options to offer?
If this was tested in the future in non-hereditary Alzheimer’s, we can certainly argue that because the study participants consent to be in the study, they know that they may receive bad news. But what we think we will feel in a certain situation is not necessarily how we will actually feel. For example, if someone said, how much is an extra 6 months of life worth if you are very sick and debilitated, the answer would be probably be different if it is actually happening to you right now. I would tend to think (ie, if I think about this occurring much later on in my life), why have an extra 6 months if I am just experiencing horrible pain and suffering? However, if this was actually happening to me now, my answer would be very different. Perhaps the same can apply to people providing consent in studies. Perhaps they do consent at the time because they don’t actually think it will happen to them. Suddenly when the information is available, maybe they don’t want to know it. While I don’t work in this research area, I’m sure there are features in place to allow people to choose. But I guess the issue that I am most interested in is the actual impact of knowing. Does knowing that you have early signs of Alzheimer’s actually speed up its onset? Do we actually do someone a disservice by providing that information?
If this is an ethical grey zone already, then think of the ethical grey zone to study this question!! (Ie, sample of people with early changes suggestive of Alzheimer’s, follow them to time of Alzheimer’s onset and analyse based on those who got told they had changes and who chose not to get told). And does knowledge of positive response with early treatment negate the potential negative effect of a grim prognosis?
At the end of the day, I do believe that it comes down to a patient’s choice. But it is just very sobering to think that participation in your study could negatively impact a person. It is a fascinating issue – the large potential benefits for future patients with Alzheimer’s, but the non-existent benefits to current participants who just found out they may likely develop Alzheimer’s.