As reported on Scientific American, researchers in laboratories and universities around the world including at the Wadsworth Laboratories in Albany, NY are moving closer and closer to brain-computer interfaces that are actually able to “unlock” the brains of people suffering from debilitating diseases like Lou Gehrig’s disease and others. These devices are able to “sense” the brain waves of these individuals and to transmit them to a computer so that others can read them and communicate with their loved ones or those for whom they care.
The goal of these BCIs (brain-computer interfaces) is to have them be affordable to persons afflicted by conditions that cause persons to be unable to communicate with others around them, to be safe to use in people’s homes, and to be able to be used over the long term.
Ethical issues abound regarding the use of these devices in the research and the practice phases that researchers have yet to address. At present the few research participants that have used these devices in the laboratory or at home have been so overjoyed to be using the devices that they have not cared (in my view) that their minds were being read. They were so happy to be able to be “heard” that they did not care that their privacy was 24 hours a day being violated. There were not put in place any oversight mechanisms for what data would, or would not be, shared by the investigators. Or, for example, when the BCI would stop being a research device and become property of the person. The device was so expensive that it could not be purchased by the research participant which meant, in effect, that the person would always be a research participant or he or she would fact the devastating withdrawal of that device when the time came for the study to end.
Now, I don’t mean to suggest that these researchers are cold-hearted or that they don’t care about their participants. In fact, I know for a fact that they do. But they cannot do their research for free. In fact, I know that they do plan to do their research with most of their participants for life. Yet, as an ethicist, I must ask: at what point, after how many hundreds of hours a research participant has participated in a research study staring at a computer monitor typing letters with his eyes using a BCI should he or she not have earned due to to his or her effort the right to keep the device on which he or she now depends to communicate?
As these devices become more cost-effective and more available to these disease populations, one has to wonder whether these ethical issues will be addressed or whether the research and then their use will just continue unabated. One would hope not. But there is a history of technologies being used in vulnerable populations to the detriment of certain segments of society. That is unless others of us stand up for them and say that we believe that their rights matter, too.
Summer Johnson, PhD.