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”.

Tuesday, August 26, 2014

“Lifelogging” and neurophysiological computing: Will we forget how to forget?

One of the most famous examples of reminiscence includes a madeleine dipped in tea, which lead to almost 3,000 pages of recollection by the narrator in the beginning of Marcel Proust's novel In Search of Lost Time, and we have all experienced these sensory triggers to a particular memory. Remembering the past helps us to re-examine our lives, make choices, and share personal accomplishments. We often use external devices to help us remember events big and small, and with advances in technology, we often record and make plans using a variety of digital devices such as iPhones, Microsoft’s Outlook, and even smart watches. We have the capability to store a lifetime of data with these advanced technologies, and with the advent of Facebook, Twitter, “selfies”, and blogs it has become routine for many people to document their lives on a daily basis in a digital form, a practice that has been referred to as “lifelogging.” The outcome of documenting activities digitally are human digital memories (HDM), which have been defined as “a combination of many types of media, audio, video, images, and many texts of textual content [1].

The concept of recording and then later having the ability to review certain documents was first proposed by Dr. Vannevar Bush in 1945 when he described the “Memex” (a combination of “memory” and index”) in an issue of Atlantic Monthly [2]. As described in the article, a Memex was “a device in which an individual stores all his books, records, and communications, and which is mechanized so that it may be consulted with exceeding speed and flexibility. It is an enlarged intimate supplement to his memory.”The device would look like a desk where documents were either recorded via microfilm or photography.

From u-tx.net

Since that time, many similar devices have been developed, but a revolutionary advance was seen with Microsoft’s SenseCam a wearable camera with a wide-angle lens and multiple sensors, including an infrared sensor to detect the presence of other people. The camera takes a photo every 30 seconds, resulting in up to 2,500 photos a day and is capable of storing 30,000 images in total. Photos can then uploaded to a computer and viewed later using a Microsoft application [3]. SenseCam was developed as a memory aid and there has been over 50 research institutions that have used the device in a variety of studies involving memory and behavior [4]. Notably the SenseCam has shown promising results in studies where it was used as memory aid for a child with anterograde amnesia [5] and with adult patients that were suffering from amnesia [3]. Aside from the medical purpose that a camera such as SenseCam could potentially serve, “lifelogging” has become more socially acceptable as we live in a digital age where Facebook posts and Twitter feeds are consumed constantly, and “selfies” are a regular occurrence at most events.

The SenseCam. From microsoft.com

Tuesday, August 19, 2014

Register Now for the International Neuroethics Society Conference!

November 13 & 14 in Washington, D.C. 

http://www.neuroethicssociety.org/

REGISTER before September 15 to receive a discount. Learn more at www.neuroethicssociety.org

 The preliminary program can be found here.

Learn the latest on the United States National Institutes of Health BRAIN Initiative and the European Commission Human Brain Project. Hear about international case studies of neuroscience in the courtroom, discuss human rights in the neuroethics dialogue AND engage in networking opportunities during breakfast, lunch and two receptions.

Speakers include NIH Directors, representatives from Congressman, co-director of the Human Brain Project and a representative from the US Presidential Commission for the Study of Bioethical Issues.


 

Public Event on November 13: "Neuroscience Knowledge & the Robotic Mind."
We kick off our meeting with a thought-provoking public event on November 13 from 5 - 7 p.m. More details will be on the website soon.

All-day Annual Meeting on November 14: Confirmed speakers include

Check the website for updates www.neuroethicssociety.org 

Both events take place at the award-winning American Association for the Advancement of Science (AAAS) Building, 12th & H Streets, NW. Washington, D.C. Space is limited!


**The Neuroethics Program will be offering a limited number of travel awards. Stay tuned for details!