overview The Core's major research projects are focused on high impact, high visibility areas including the use of drugs and devices for neuroenhancement, ethics in neurodegenerative disease and regenerative medicine research, international and cross-cultural challenges in brain research, neuroimaging in the private sector, and the ethics of personalized medicine, among others. Members of the Core also lead initiatives aside from their research projects. Click here to download the Core's 2007-2008 Annual Report. Click here to download the Core's 2008-2009 Annual Report. Click here to download the Core's 2009-2010 Annual Report. ongoing research The Neuroethics of Enhancement This research initiative will focus on the way in which a specific neurotechnology--pharmacological agents use as "cognitive enhancers"-- is currently implemented into culture and social practice. The initiative is coordinated by Dr. Thomas Metzinger of Johannes Gutenberg University Mainz and consists of several projects including one lead by Dr. Reiner at the Core called "International Neuroethics: Enhancement, Drugs and Devices". The primary aim of this project is to better understand the attitudes of health professionals (nurses and physicians) towards neural enhancement and to determine the ethical principles which they rely upon for their decision-making. Neuroimaging and Ethics In the sixth year of funding the Advanced Neuroimaging: Ethical, Legal and Social Issues initiative has three specific projects with the goal of identifying and addressing the interactions of neuroscience research with ethics and society. • Project 1 will examine the early integration of neuroethics into neuroscience using citation pattern analysis. • Project 2 will evaluate specific investigator needs for integrating neuroethics into neuroscience using brain mapping-neuroimaging, imaging genomics and neurostimulation- as the model. • Project 3 will bring the voice of stakeholders to the upstream development of brain mapping methods for diagnosis and intervention of mental illness and compare receptivity to gene hunting and genetic testing. Click here to download a copy of the poster ‘Neuroethics Resources: Moving from “Invisibility to High Usability” by Kate Tairyan, Carole Federico and Judy Illes presented at the Canadian Association for Neuroscience annual meeting, 2009. The Next Generation of Incidental Findings Research Incidental findings are unexpected findings of clinical relevance found in research subjects. Institutions conducting brain imaging research have several options for handling incidental findings which range from not notifying research subjects or following up on incidental findings to doing a full clinical workup of each subject. A team consisting of radiologist Dr. David Li, health economist Dr. Carlo Marra, Mohsen Sadatsafavi and the Core's Dr. Illes will conduct a cost-benefit analysis of the different approaches to handling incidental findings. Clinical Neuroethics The Clinical Neuroethics program at VCHRI is designed to closely integrate clinical ethics activities within the hospital with empirical neuroethics research. Our activities include: • Hosting seminars on cutting edge topics in neuroethics; Hosting journal clubs with residents, fellows and faculty on tough cases in patients with brain disorders; The development of a ‘tough cases’ clinical neuroethics template • Other didactic activities; • Providing research and training opportunities for residents in neurological medicine. Some examples include: • Cultural perspectives on the utilization of ethics services for patients with acute brain disorders; • Impact of brain images on the conceptualization and intervention of psychiatric illness; • Perspectives on spiritual support and ethics consultation for neurological cases; • Perspectives on treatment modalities – drugs, devices, stem cells – for brain disorders. Over the long term, we hope to model interdisciplinary interactions involving research and ethics for other departments. Click here to download the poster ‘Clinical Neuroethics Education and Outreach’ by Judy Illes, Patricia Lau, Sofia Lombera and Peter Reiner presented at the Society for Neuroscience annual meeting, 2008. bioethical landscape of neurodegenerative diseases research and treatment The aim of this research project is to promote the novel understanding of how different stakeholders - scientists, clinicians, patients, industry partners, healthcare providers - perceive and react to research on neurodegenerative disease and develop recommendations for dealing more effectively with the ethics challenges in research and treatment of neurodegenerative diseases. dementia knowledge translation This grant is principally aimed to develop a sustainable infrastructure for dementia-related knowledge translation and exchange by establishing a collaborative and integrated network of key stakeholders (researchers, clinicians, formal and informal care providers, persons with dementia and their families, educators, policy makers, government and community agencies, advocacy groups, and industry) Multicultural concepts of autonomy, mental well-being and cognitive decline in aging and dementia The disease model of dementia is not universally accepted across all cultures. Some First Nations groups view dementia-related cognitive decline using both biomedical and lay perspectives, others as part of normal aging, and yet others with the belief that declining cognitive behaviors are a means of communication during transition from one life to the next. The perspectives held in a population shape coping mechanisms and attitudes both by individuals and their community about when medical treatment should be sought. By gaining an understanding about such culturally-relevant aspects of aging and dementia, we can develop neuroethics models to bridge existing science and social divides that today jeopardize truly relevant and respectful care. Click here to download a copy of the poster ‘Aging, Dementia and Cognitive Decline: Perspectives of an Aboriginal Community in British Columbia’ by Sofia Lombera, Rachel Butler, Lynn Beattie and Judy Illes presented at the Canadian Association for Neuroscience annual meeting, 2009. Dementia Research with diverse ethnocultural populations: exploring the neuroethics challenges This research is intended to explore and determine how diverse ethnocultural factors affect the participation in dementia research and understand how researchers take cultural and linguistic differences into consideration while designing protocols. We will focus on three topics: challenges in research design, culturally appropriate informed consent documents, scientists’ views on methods of obtaining informed consent (verbal vs. written, proxy or community consent) and recruitment practices. Perspectives and Attitudes of Individuals with Frontotemporal Dementia (FTD) and Alzheimer's Disease Dementia affects about 6% of the population over age 65 in Canada. Discoveries of causative genetic mutations and genetic risk factors for different forms of dementia have created the possibility of predictive and diagnostic testing. This pilot project will primarily explore patient views about genetic testing and participation in research on FTD and Alzheimer's. stem cells for spinal cord injury: elsi issues The voice of people with pathology of the spinal cord will be harnessed to inform the development of clinical trials and to identify likely candidates for whom therapy may have an early and maximum benefit. To achieve this goal, we will conduct focus groups with people who have acquired a spinal cord injury, their primary caregivers and health care providers. Click here to download a copy of ‘Stem Cells for Spinal Cord Injury

NATIONAL CORE FOR NEUROETHICS

LA NEUROÉTHIQUE

THE UNIVERSITY OF BRITISH COLUMBIA

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overview

The Core's major research projects are focused on high impact, high visibility areas including the use of drugs and devices for neuroenhancement, ethics in neurodegenerative disease and regenerative medicine research, international and cross-cultural challenges in brain research, neuroimaging in the private sector, and the ethics of personalized medicine, among others. Members of the Core also lead initiatives aside from their research projects.

Click here to download the Core's 2007-2008 Annual Report.

Click here to download the Core's 2008-2009 Annual Report.

Click here to download the Core's 2009-2010 Annual Report.

ongoing research

The Neuroethics of Enhancement

This research initiative will focus on the way in which a specific neurotechnology--pharmacological agents use as "cognitive enhancers"-- is currently implemented into culture and social practice. The initiative is coordinated by Dr. Thomas Metzinger of Johannes Gutenberg University Mainz and consists of several projects including one lead by Dr. Reiner at the Core called "International Neuroethics: Enhancement, Drugs and Devices". The primary aim of this project is to better understand the attitudes of health professionals (nurses and physicians) towards neural enhancement and to determine the ethical principles which they rely upon for their decision-making.

Neuroimaging and Ethics

In the sixth year of funding the Advanced Neuroimaging: Ethical, Legal and Social Issues initiative has three specific projects with the goal of

identifying and addressing the interactions of neuroscience research with ethics and society.

• Project 1 will examine the early integration of neuroethics into neuroscience using citation pattern analysis.

• Project 2 will evaluate specific investigator needs for integrating neuroethics into neuroscience using brain mapping-neuroimaging, imaging genomics and neurostimulation- as the model.

• Project 3 will bring the voice of stakeholders to the upstream development of brain mapping methods for diagnosis and intervention of mental illness and compare receptivity to gene hunting and genetic testing.

Click here to download a copy of the poster ‘Neuroethics Resources: Moving from “Invisibility to High Usability” by Kate Tairyan, Carole Federico and Judy Illes presented at the Canadian Association for Neuroscience annual meeting, 2009.

The Next Generation of Incidental Findings Research

Incidental findings are unexpected findings of clinical relevance found in research subjects. Institutions conducting brain imaging research have several options for handling incidental findings which range from not notifying research subjects or following up on incidental findings to doing a full clinical workup of each subject. A team consisting of radiologist Dr. David Li, health economist Dr. Carlo Marra, Mohsen Sadatsafavi and the Core's Dr. Illes will conduct a cost-benefit analysis of the different approaches to handling incidental findings.

Clinical Neuroethics

The Clinical Neuroethics program at VCHRI is designed to closely integrate clinical ethics activities within the hospital with empirical neuroethics research. Our activities include:

• Hosting seminars on cutting edge topics in neuroethics;

•Hosting journal clubs with residents, fellows and faculty on tough cases in patients with brain disorders;
•The development of a ‘tough cases’ clinical neuroethics template

• Other didactic activities;

• Providing research and training opportunities for residents in neurological medicine. Some examples include:

• Cultural perspectives on the utilization of ethics services for patients with acute brain disorders;

• Impact of brain images on the conceptualization and intervention of psychiatric illness;

• Perspectives on spiritual support and ethics consultation for neurological cases;

• Perspectives on treatment modalities – drugs, devices, stem cells – for brain disorders.

Over the long term, we hope to model interdisciplinary interactions involving research and ethics for other departments.

Click here to download the poster ‘Clinical Neuroethics Education and Outreach’ by Judy Illes, Patricia Lau, Sofia Lombera and Peter Reiner presented at the Society for Neuroscience annual meeting, 2008.

bioethical landscape of neurodegenerative diseases research and treatment

The aim of this research project is to promote the novel understanding of how different stakeholders - scientists, clinicians, patients, industry partners, healthcare providers - perceive and react to research on neurodegenerative disease and develop recommendations for dealing more effectively with the ethics challenges in research and treatment of neurodegenerative diseases.

dementia knowledge translation

This grant is principally aimed to develop a sustainable infrastructure for dementia-related knowledge translation and exchange by establishing a collaborative and integrated network of key stakeholders (researchers, clinicians, formal and informal care providers, persons with dementia and their families, educators, policy makers, government and community agencies, advocacy groups, and industry)

Multicultural concepts of autonomy, mental well-being and cognitive decline in aging and dementia

The disease model of dementia is not universally accepted across all cultures. Some First Nations groups view dementia-related cognitive decline using both biomedical and lay perspectives, others as part of normal aging, and yet others with the belief that declining cognitive behaviors are a means of communication during transition from one life to the next. The perspectives held in a population shape coping mechanisms and attitudes both by individuals and their community about when medical treatment should be sought. By gaining an understanding about such culturally-relevant aspects of aging and dementia, we can develop neuroethics models to bridge existing science and social divides that today jeopardize truly relevant and respectful care.

Click here to download a copy of the poster ‘Aging, Dementia and Cognitive Decline: Perspectives of an Aboriginal Community in British Columbia’ by Sofia Lombera, Rachel Butler, Lynn Beattie and Judy Illes presented at the Canadian Association for Neuroscience annual meeting, 2009.

Dementia Research with diverse ethnocultural populations: exploring the neuroethics challenges

This research is intended to explore and determine how diverse ethnocultural factors affect the participation in dementia research and understand how researchers take cultural and linguistic differences into consideration while designing protocols. We will focus on three topics: challenges in research design, culturally appropriate informed consent documents, scientists’ views on methods of obtaining informed consent (verbal vs. written, proxy or community consent) and recruitment practices.

Perspectives and Attitudes of Individuals with Frontotemporal Dementia (FTD) and Alzheimer's Disease

Dementia affects about 6% of the population over age 65 in Canada. Discoveries of causative genetic mutations and genetic risk factors for different forms of dementia have created the possibility of predictive and diagnostic testing. This pilot project will primarily explore patient views about genetic testing and participation in research on FTD and Alzheimer's.

stem cells for spinal cord injury: elsi issues

The voice of people with pathology of the spinal cord will be harnessed to inform the development of clinical trials and to identify likely candidates

for whom therapy may have an early and maximum benefit. To achieve this goal, we will conduct focus groups with people who have acquired a spinal cord injury, their primary caregivers and health care providers.

Click here to download a copy of ‘Stem Cells for Spinal Cord Injury - Frequently Asked Questions’