Should There be a Right to Research Results?
Originally submitted by: jadelay
A hard act to follow the tale of "Mansheep Goes To Kindergarten," the first contribution to our newest forum subject area: "Ethics and Science." But there is important information to publicize about the work of one of the members of the a2ethics.org Advisory Board, such as it loosely exists. And that is the recent shout out that we want David Shalowitz to receive for his recent (May 18, 2008) research study published in the online journal, Public Library of Science Medicine (http://medicine.plosjournals.org.). Shalowitz, a member of the University of Michigan Bioethics program and a third year medical student, conducted the research review along with Frank Miller, who works for the National Institutes of Health as a researcher with The Clinical Center's Department of Bioethics. So what was the review about? To cut to the core, the study was a narrative report on some other studies, (bear with me here)...and those studies were looking at the impact of communicating the results of clinical research on the attitudes, and in a few cases, the subsequent health behaviors, of the people who had volunteered to be in these studies. So what did David and his coauthor find out? Or more carefully, what did they learn from doing this study that might be useful for further research? First things first. You may remember that Shalowitz was the moderator for the a2ethics.org panel that we did earlier in the year on the topic of "Breaking Bad News." You can listen to it by going to the podcast pulldown. Anyway, there is a small link to this research with the topic of bad news. Because...in this study Shalowitz is reporting on a different kind of 'news:' and that is, the news that research study volunteers receive from the researchers when the study is done. What Shalowitz and Miller found out was that the majority of people volunteering to be in research studies regarded it as important to receive the results, even if the results risked anxiety, guilt, anger or stress. (My words, not the researchers'.) In fact, a few suggested that they had the right to the research results. I found this particularly interesting. And worth questioning. Where is that coming from? Since when did we come to have a 'right' to research results in studies for which we have volunteered? And even more interesting to me is that in the few studies where Shalowitz and Miller reported on whether those who received the results actually acted upon these results (when I assume they could have), not many did. So...does this signal that if we have a right to clinical results that impact our health and well-being, we should also imply a responsibility to follow through or to act on these results when we are able to do so? A final shout out to David for raising some very interesting questions about the issue of communicating news...in this case...research news about health.
- Login or register to post comments
- Email this Forum topic
Right to research results
I have been thinking about this issue of the right to research results, triggered by the article in the online journal, Public Library of Science Medicine by David Shalowitz and Frank Miller.
It is easy to say that people who volunteer in a research study should have a right to be informed of the researchers' results for the study. But what does that mean? How far does the right extend? For example, should the research results only be communicated to the person with the condition the researcher is studying? In the reported review, some of the studies were conducted on children. Does this mean that their families, by proxy have the right to the results?
And it is not always the case that just because there is a responsibility that there is also a corresponding right. In this example, we are talking about the researcher's responsibility to inform the volunteers in a study. I suppose there is no corresponding positive right on the part of the researcher to provide the volunteer with the information through multiple communications technologies or to send the information to anyone the volunteer wants. This would be prohibitively expensive.
There are other questions.
1. Perhaps, volunteers who receive the research results fail to understand the information they receive and or are powerless to act on it, even if they do. What are the responsibilities of researchers in these cases?
2. What are the differences between various communications approaches? If it were possible to customize the communication of research results that would help volunteers to understand research results, why shouldn't it be important to spend money on these approaches? Even if these costs are seemingly prohibitive?