Following on the heels of a $110 million brain research push, a U.S. ethics panel today urged guidelines that would help protect privacy and patient consent, even for those unable to give it for themselves.
President Barack Obama this year allocated the money for a U.S. science initiative that aims to spur new work by both academic and federal researchers. The president’s Bioethics Commission today said strict rules on ethics can protect patients with Alzheimer’s, depression and dementia who are increasingly the subjects of scientific study.
“Neuroscience research strikes at the very core of who we are,” said Amy Gutmann, head of the panel. “So the ethical stakes of neuroscience research could not be higher.”
The panel’s report notes, for instance, that scientists are already investigating the use of neuroimaging as a possible tool in determining criminal intent or the tendency to lie. Subjects, the report said, need to have an assurance of privacy in order to advance scientific research into disease.
The report cites the ethics program put into place by the Defense Advanced Research Projects Agency, or DARPA, as a potential model for other federal programs and schools.
DARPA has created an independent panel of six nationally recognized bioethicists to work with neuroscience researchers and program manager consult an ethics mentor at the inception of each project they undertake to incorporate ethical considerations. The panel members also write a white paper about each program or project plan before it begins.
Today’s report by the president’s bioethics committee is the first of two the group expects to release for a disease field that affects about one in four Americans. The second will address the implications of ethical practices among stakeholders including scientists, ethicists, educators, advocacy groups and public and private funders.
Technology is being developed to create structural maps of the brain, censuses of brain cell types, and ways to record neural networks, according to the National Institute of Health, which received $40 million of the Obama initiative’s funding.
In California, for instance, Stanford University professor Karl Deisseroth uses high-resolution tools to control and map biological systems in freely moving mammals, such as mice. It lets researchers see structures of neurons and circuits inside a brain. In Atlanta, Emory University professor Helen Mayberg is studying brain circuits in depression and the effects of treatments measured by structural imaging.
“Brain function will be probed at a level that has not been possible, and it will reveal new information, some of which we have not been trained” to work with, said Howard Federoff, the executive vice president for health sciences at Georgetown University Medical Center in Washingon.
Federoff’s research team keeps a bioethicist on board to help weigh whether potential treatments make practical sense for patients, clinicians and funding agencies looking to further their projects, he said.
“If we did not have the benefit of having incorporated such an expert into our work, we would have been unprepared to deal with the lay public response and the clinical response,” Federoff said in a telephone interview.
New guidelines should “help patients, family members and community members understand the research, and figure out what it means,” he said.
Questions may also arise on whether research into the process of the brain is used to enhance performance, rather than treat and prevent illnesses, said Jeffrey Borenstein, president of the Brain & Behavior Research Foundation.
‘We want to be able to make sure that knowledge is used appropriately for the benefit of individuals, their families, and society at large,’’ he said in a telephone interview.
As research progresses, it’s important that “information we have about a particular individual’s brain functioning is kept confidential and options about how to treat a condition are made available to a person,” Borenstein said.