Tuesday, September 23, 2014

Neuroethics in Theory and in Practice: A First-hand Look into the Presidential Commission for the Study of Bioethical Issues

Anyone who turned on CNN this past summer probably remembers the most popular news stories ranging from Obama’s recent efforts to quell political violence in Iraq to Emory University’s admission of two Ebola patients. What was missing from several (if not all of these newscasts), however, was any mention of the continuation of President Obama’s BRAIN initiative right here at Emory University. Specifically, this past June, the Atlanta university welcomed the prestigious Presidential Commission for the Study of Bioethical Issues to confer over many pertinent issues surrounding various ethical and neuroscientific issues. I was lucky enough to be able to attend the session and catch a glimpse of the commission in action. Upon the commission’s completion, I found myself excited while simultaneously confused about the group’s overall mission and decided it would be worthwhile to investigate the Bioethics Commission further. Particularly, I hoped to understand why it is that Obama created a group to investigate several important issues discussed on this blog every week.

From Center for Genetics and Society

Tuesday, September 16, 2014

Teaching Tactics - Neuroethics in the Curriculum

I made and abandoned several attempts at an opening sentence for this post and all of them included a deft way to bury the lead. The lead is this: I’m thrilled for two of my students whose video, Empathy and your Brain, was selected as one of the top submissions to the 2014 Brain Awareness Video Contest. Their video now has the chance to be selected as the fan favorite in the People’s Choice contest.

But why was I burying it?

Tuesday, September 9, 2014

Big data and privacy on the Web: how should human research be conducted on the Internet?

“They said, ‘You can’t mess with my emotions. It’s like messing with me. It’s mind control.'” That’s what Cornell communication and information science professor Jeffrey T. Hancock reported in a recent New York Times article about the public outcry over the now infamous Facebook emotional manipulation study (read on for details). Hancock was surprised and dismayed over the response. He sees the advent of massive-scale sociology and psychology research on the Internet as a “new era” and he has a point. The days of mostly relying on college students as research subjects may be coming to an end. But how should research be conducted in this new online setting? Is it even appropriate to use data from web sites as it is collected now with little, if any, user knowledge and informed consent existing only in the form of privacy policies that nobody reads?1 In this post I argue that the Internet is not the Wild West and therefore internet-based research should not be allowed to side step established practices of informed consent. Furthermore, significant changes must be made so that these new research opportunities are maximized in the best way possible.

Via Linkedin

 Earlier this year Facebook, the social network with well over 1 billion users, found itself in hot water after publishing a study in collaboration with academic researchers (including Hancock above) that sought to measure “emotional contagion” online.2 In January of 2012 Facebook researchers altered the News Feed content of nearly 700,000 users without their knowledge or explicit consent. Users in a control group had random posts withheld from their News Feeds, irrespective of emotional content, whereas others either had some posts with a positive valence removed or some with a more negative tone hidden. They found that overall, omitting News Feed content – either negative or positive – seemed to affect the emotional valence of subsequent posts. And all those Facebook users who saw fewer emotion-tinged posts subsequently posted fewer updates. In effect, Facebook researchers were successfully able to manipulate the emotions of hundreds of thousands of users simply by altering their News Feed content. The researchers were able to study a phenomenon – emotional contagion – which can be very difficult to study in person due to a variety of potential experimental confounds and they were also able to achieve extraordinary statistical power. But by not explicitly asking for consent many users felt well, used.

Monday, September 1, 2014

The sound of silence: Fetal alcohol spectrum disorder

By Emily Bell, PhD

Dr. Emily Bell is Researcher at the Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM). Dr. Bell’s MSc and PhD research in Psychiatry at the University of Alberta focused on investigating brain activity in mood and anxiety disorders using functional magnetic resonance imaging (fMRI). Her postdoctoral work shifted her into the field of neuroethics, where she examined ethical and social challenges associated with deep brain stimulation in psychiatric disorders. As an investigator of the Neuroethics Core of NeuroDevNet, a Canadian Network of Centres of Excellence, Dr. Bell has been involved in a wide range of network activities and research in the area of pediatric ethics. This includes recent work on the implications of stigma for public health policies and practices in fetal alcohol spectrum disorder and ethical concerns associated with the transition of youth with neurodevelopmental disorders to adult health services. Dr. Bell has been awarded support from the Social Sciences and Humanities Research Council (SSHRC), the Fonds de la recherche en santé du Québec (FRSQ), the Canadian Institutes of Health Research (CIHR), and the Killam Trust. She is currently lead co-investigator on two CIHR grants, including one in the area of vulnerability and mental health research ethics.

Let me start by saying that I never planned to have a research or action agenda in ethics and fetal alcohol spectrum disorder. Fetal alcohol spectrum disorder (FASD), as an umbrella term, describes a range of adverse developmental outcomes resulting from exposure to alcohol during pregnancy. Sure, my graduate degrees in psychiatry were an entry to understanding the challenges experienced by vulnerable patients, the social and relational aspects of health, and the deep and enduring force of stigma. All this prepared me to some degree for the complex web of ethical and social tensions in the study of FASD. These tensions cut across disciplines and domains and touch on alcohol policy, public health initiatives, concepts of motherhood, of maternal/fetal rights, and of specialized care for persons with disability throughout the life course. I was fortunate, the sheer complexity of the issues at stake also gave way to a network of colleagues (NeuroDevNet, a Canadian Network of Centres of Excellence) who themselves were jack of all trades; scientists and physicians with a sincere interest in and powerful grasp of the ethical issues faced by policy makers, pregnant women, and those affected by prenatal alcohol exposure.

From neurodevnet.ca

FASD is a leading cause of developmental disability and a significant public health issue accompanied by substantial lifelong burden, especially through secondary disabilities (i.e., difficulties at school, trouble with the law, challenges living independently). One of the key challenges associated with developing a comprehensive strategy for managing and preventing FASD is the need for a coordinated approach across a variety of social systems (i.e., foster care system, criminal justice system, health systems). Moreover, despite the fact that prenatal alcohol exposure continues to be a prevalent cause of developmental disability it receives far less attention than some other neurodevelopmental conditions such as autism. It’s probably not hard to imagine why the field as a whole might suffer from a lack of concerted attention. The stigma associated with drinking during pregnancy is well known and can dissuade women who drink during pregnancy from seeking treatment or disclosing their drinking habits (Eggertson, 2013). We anticipate that this stigma also filters down to the child or the individual with FASD (Bell et al., under review). The moral elements potentially influencing the construction of fetal alcohol syndrome have been well characterized. Armstrong (1998) has described how the diagnosis risks becoming just another way to label women and children who are “beyond hope and destined to be societal problems”.