The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Considering Ethics of Neurological Research at All Stages of Life

As the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continues examining ethical issues associated with neuroscience research and the application of research findings, the discussion in Atlanta turned to the difficult issues that arise in neurological research conducted at different stages of life.

In his charge to the panel, President Obama noted that it is important to consider “the implications of the discoveries that we expect will flow from studies of the brain” and explore the issues they raise “as they relate to different life stages, from infancy through old age.”

The Bioethics Commission invited four experts to outline concerns that coalesce around various patient groups, pediatric to geriatric.

William D. Graff, M.D., F.A.A.P., F.A.A.N., a professor in the Department of Pediatrics and Neurology at the Yale University School of Medicine, considered ethical issues that need to be considered when the research subject is a child.

He said there is a critical need for research into neurological disorders that can affect infants, children, and adolescents, pointing out that “neurological development is the essence of pediatrics.” But he said that “knowledge gained from pediatric research must be obtained in a way that recognizes the vulnerability of children and respects their best interests.”

David W. Wright, M.D., Associate Professor of Emergency Medicine and Director of Emergency Neurosciences at Emory University School of Medicine, explored issues that arise from research involving adult patients experiencing neurological emergencies, such as traumatic brain injury or stroke.

He said brain injuries suffered by U.S. military personnel serving in Iraq and Afghanistan, along with increased attention to sports-related brain trauma, has significantly intensified efforts to find better treatments for these conditions.

Wright said the “elephant in the room is the inability to protect the autonomy” of potential research subjects who might be completely incapacitated and unable to provide consent. He noted the tension between the informed consent concerns surrounding this patient population and the urgent need to deal with injuries that are killing 52,000 people each year, the equivalent of crashing 175 747s.

“There is a moral imperative to find new treatments,” he said.

Howard Feldman, M.D., F.R.C.P, Professor of Neurology and Executive Dean of Research on the Faculty of Medicine at the University of British Columbia, focused on geriatric participants, including ethical issues with patients suffering from dementia. He said the burden presented by the growing numbers of people worldwide with dementia, which could double by 2030 and generate up to $1 trillion in health care costs, has made the search for treatment a public health imperative.

Feldman pointed to how obtaining consent from patients suffering from neurologically degenerative disorders is complicated by the fact that the very nature of the condition means the patient’s capacity and awareness is changing over time.

“You could imagine someone starting a program of research with full capacity and then it changes,” he said.

This issue, assessing a particular patient’s capacity to participate in research, is a challenge facing researchers working in neurological research across the life stages. Earlier in the day, John Arras, Ph.D., the Porterfield Professor of Biomedical Ethics and Professor of Philosophy at The University of Virginia, observed that the issue of capacity comes down to the ability or lack of ability to consent.”

Rebecca Dresser, J.D. , Daniel Noyes Kirby Professor of Law, Professor of Ethics in Medicine, Washington University, St. Louis, discussed concerns associated with research involving patients with diminished, changed, or no capacity to consent, and the ethical safeguards that should be in place to protect them. She said dealing with capacity concerns presents researchers with the constant challenge of evaluating just how much the neurological deficit impairs the ability to provide informed consent.

“We don’t want to stereotype people based on a diagnosis. You don’t want to disrespect the autonomy of people still able to make their own choices,” she said. “But on the other hand, you don’t want to fail to protect vulnerable people who cannot understand the decisions before them.”

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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