Neurological conditions—which include dementia, epilepsy, multiple sclerosis, Parkinson’s disease, schizophrenia, and traumatic brain injury—affect as many as one billion people globally. Neuroscience has begun to make important breakthroughs, but we still understand less about our brains than about any other part of our bodies.
President Obama’s Brain (Brain Research through Advancing Innovative Neurotechnologies) Initiative will expand our knowledge, which ultimately may enable us to cure major brain disorders. Success at this important task calls for probing the neural networks that normally create—or, in their diseased states, destroy—our cognitive and emotional capacities to function as human beings. Because research on our brains strikes at the very core of who we are, the ethical stakes of interventions could not be higher.
The Presidential Commission for the Study of Bioethical Issues, which I chair, released a report on Wednesday calling for the integration of ethics early and throughout the course of neuroscience research. This integration is essential to enable researchers, policy makers, and the public to address the important implications of neuroscience research and its applications for our personal and professional lives. We need both scientific facts and ethical principles to decide, for example, whether medical interventions to improve cognitive capacity are worth pursuing or what neurological evidence, if any, should be allowed in the courtroom.
Too often in our nation’s past, ethical lapses in research have had tragic consequences and derailed scientific progress. We need only to consider the transorbital lobotomy, a psychosurgical procedure that some scientists claimed ridded patients of “delusions, obsessions, and nervous tensions.” Lobotomies were advertised as safe and simple enough that they could be performed in a doctor’s office. The kind of psychosurgery that led to the lobotomy won its creator the Nobel Prize in Medicine.
But neither the underlying theory nor the procedure itself was rigorously tested before the surgery was widely adopted. The limited state of scientific knowledge and the attendant risks were hidden from public view. The procedure too frequently resulted in disability and even death. Tragically, tens of thousands with psychiatric disorders were lobotomized before the procedure fell out of favor. The patients included President John F. Kennedy’s younger sister Rosemary, who was permanently incapacitated by a lobotomy gone wrong.
The lobotomy movement shared a fundamental flaw with the Tuskegee syphilis experiment, the research project on sexually transmitted disease in Guatemala, eugenics-inspired compulsory-sterilization laws, and other medical disasters: the absence of rigorous attention to ethical standards from the start of the science. As a consequence, those officially sponsored efforts eventually resulted in gut-wrenching ethical postmortems and a continued suspicion in many communities of sound research and medical practices that could improve their health and quality of life.
Ethics in science must not come to the fore for the first time after something has gone wrong. The best approach is for all stakeholders in neuroscience research to work together from the start of potentially pathbreaking research to anticipate problems and prevent unethical surprises down the road. Various approaches incorporate those crucial ethical perspectives, including ethical, legal, and social implications programs, which were the first national models for integrating ethics into major federal science initiatives. Their successes are worthy of emulation, and their limitations are ripe for rigorous evaluation.
An essential first step is to include expert ethicists in the Brain Initiative’s advisory and review bodies. The first advisory group convened by the National Institutes of Health to recommend early funding priorities for the project notably identified none. Expert ethicists facilitate integration by working with scientists to imbue new projects with both ethical and scientific rigor from the ground up. Taking the long view, the Bioethics Commission also calls for ethics to be embedded at all levels of science education, so more scientists are among the first to call for ethics integration in research.
By integrating ethics into neuroscience research early and thoroughly, we can avoid the need for a future bioethics commission to perform a painful postmortem on the Brain Initiative. When it comes to neuroscience, surely we should use all our brains.
Author Bio: Amy Gutmann, president of the University of Pennsylvania, is chair of the Presidential Commission for the Study of Bioethical Issues.