President's BRAIN Initiative to integrate ethics into brain research

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June 20, 2014

This month, after the National Institute of Health announced that it was seeking $4.5 billion for its work on President Obama’s BRAIN Initiative, the Presidential Commission for the Study of Bioethical Issues released its recommendation that the research explicitly include ethical perspectives.

The bioethics commission was responding to President Obama’s charge that it “identify proactively a set of core ethical standards — both to guide neuroscience research and to address some of the ethical dilemmas that may be raised by the application of neuroscience research findings” as part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

The BRAIN Initiative aims to advance neuroscience research and discover new ways to treat and prevent brain disorders. However, the president acknowledged that those findings and their application raise questions “relating to privacy, personal agency, and moral responsibility for one’s actions; questions about stigmatization and discrimination based on neurological measures of intelligence or other traits; and questions about the appropriate use of neuroscience in the criminal-justice system, among others.”

The bioethics commission envisions more than merely “checking off the ‘ethics box,’” as a post on blog.Bioethics.gov put it. Integrating ethics early and explicitly throughout research should be built into the institutional infrastructure and should include providing research ethics consultation services and researching the ethical, legal, and social implications of scientific research. The bioethics commission has also recommended that the BRAIN Initiative: evaluate different approaches to integrating science and ethics, incorporate ethics and science into education “at all levels,” and include people with expertise in the ethical implications of neuroscience research on scientific advisory and funding review bodies.

Putting these recommendations into practice may be easier said than done. Amy Gutmann, the chair of the bioethics commission, seemed to recognize the challenge when she asked participants at the end of the most recent meeting in Atlanta this month what they think is “the single most important issue we need to deal with, whether it be a finding or recommendation in our report.”

“Most scientists see consideration of ethical issues in some formal sense as an impediment to their work,” said Herbert S. Lin, chief scientist of the Computer Science and Telecommunications Board at the National Research Council of the National Academies. “If you could find a way of turning that around where ethics can support their work, that is really an important thing to do. The incentives right now are misaligned.”

“I think that we are too ready to trust our gut reaction–and most of the time our gut reaction is good,” said Joshua D. Greene, an experimental psychologist and neuroscientist at Harvard. “But when it comes to bioethical issues . . . we really have to be willing to put our gut reactions aside and think in a more reflective way about the consequences of different policy choices.”

Gutmann concluded with a word of caution for those who might consider ethical consideration to be a nuisance or an obstacle to scientific discovery. “Immediate incentives may be to avoid ethical issues and just get on with narrow science,” she said. “But one major ethical lapse, especially, but not only, in an emerging science, and it can derail progress for a long time. So being proactive and integrative in ethics makes practical, not just ethical sense, if you are committed as we are as a society to moving scientific progress forward.” 

She discussed examples of ethical lapses leading to tragic results in an article in the Chronicle of Higher Education. Lobotomies, for instance, lacked scientific evidence, and yet were advertised as safe and even led the creator to receive the Nobel Prize in Medicine. But they caused disability and death among many of the tens of thousands of people on whom they were performed. “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,” she wrote: “the absence of rigorous attention to ethical standards from the start of the science.”

The bioethics commission will continue to examine the ethical and societal implications of neuroscience research later this year.

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