New ethics report for neuroscience research

"Be prepared to participate," expert says

The Presidential Commission for the Study of Bioethical Issues’ May 2014 report, Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society, includes recommendations for institutions and individuals engaged in neuroscience research.

"Bioethicists should be prepared to participate in the integration of ethics and neuroscience," says Lisa M. Lee, PhD, MS, the Bioethics Commission’s executive director.

Progress in contemporary neuroscience offers promise for discovering improved interventions, and perhaps cures, for neurological disorders that affect more than one billion people globally and millions of people in the United States, says Lee.

"A single ethical lapse in scientific research can cause a loss of public confidence, which can obstruct the progress of other research," she adds.

The report provides examples to illustrate important ethical issues relevant to neuroscience research. These are neuroimaging and brain privacy; dementia, personality, and changed preferences; cognitive enhancement and justice; and deep brain stimulation research.

"These examples highlight some of the ethical and societal issues that can arise in neuroscience research and the application of research findings," says Lee.

The Bioethics Commission recommended that institutions and individuals engaged in neuroscience research should:

• integrate ethics across the life of a research endeavor;

• identify the key ethical questions associated with their research;

• take immediate steps to make explicit their systems for addressing those questions;

• include substantive participation by persons with expertise in ethics on advisory and review panels.

"Many of these approaches necessitate direct involvement from bioethicists and other professionals with experience in ethics," says Lee.

"This volume is a short, high-level overview of the issues," says Henry T. Greely, JD, director of the Stanford Center for Law and the Biosciences and chair of the steering committee at Stanford Center for Biomedical Ethics. "Its recommendations are good, and I hope they are followed. It really adds up to taking the ethical issues seriously."

The report’s summary of the many ways in which ethics can be integrated into science may be quite useful, adds Greely. "Ethics are most important not for their effects on science, but on people," he says. "Consideration of ethical issues is needed to help make sure that people are safe and well-treated."

Anytime people think they have been harmed by scientific research or its results, or feel they have been lied to, cheated, or betrayed by researchers, is bad for science, says Greely. "The consequences of the Public Health Service’s study of untreated syphilis among African-American men — the so-called Tuskegee study — still reverberate," he says.

There is a clear need, says Greely, to address questions of the safety, efficacy, and long-term personal and societal consequences of neuroscience-based predictions and interventions.

"Right now, issues of the ethics of research are foremost: questions of consent, confidentiality, incidental findings, and so on," says Greely. "But neuroscience is edging into clinical, consumer, educational, and even legal system use."

The report serves as an important symbolic gesture that ethics should be valued and prioritized, not only by those who conduct neuroscience research, but also by those who support the endeavor of neuroscience, says Karen S. Rommelfanger, PhD, neuroethics program director at Emory University in Atlanta.

"As noted in the report, often neuroscientists throughout their careers, as I have done at earlier points in my career as a neuroscientist, conflate ethics with compliance, and think of ethics narrowly as research ethics," she says.

Rommelfanger notes that the study of neuroscience, unlike many other scientific disciplines, "strikes at the core of who we think we are. Therefore, the ethical questions often move beyond research and professional ethics into the complex terrain of evaluating societal implications of our work."

These are the very questions that draw students and the public in to learn more about the brain. "This also means that neuroscientists have an enormous responsibility to be revisiting these questions in their own work as responsible stewards of their work," says Rommelfanger.

Neuroscientists must be afforded the time and resources to consider these questions, she says.

"The challenge ahead will be addressing how to implement these recommendations," says Rommelfanger, noting that the financial resources put forward for the BRAIN Initiative are still relatively modest, given the costs associated with conducting neuroscience research.

"Integrating ethics throughout the life of the research project will require a cultural change — starting with having resources that are clearly allocated to ethical inquiry," says Rommelfanger.