Protecting the Genetic Data of Families with Histories of Serious illnesses
February 3, 2014
Hosted by Dr. Gordon Atherley
Louise Vetter is the Chief Executive Officer of the Huntington’s Disease Society of America, http://www.hdsa.org/. Bev Heim-Myers is Chief Executive Officer and Executive Director of the Huntington Society of Canada, www.huntingtonsociety.ca. They explain their Societies’ work generally and in protecting the genetic data of families with histories of Huntington’s disease. They discuss genome projects and the benefits and challenges that these create, especially in protecting the privacy of the genetic heritage of families with histories of serious illnesses. They examine ways of overcoming the challenges to privacy protection that arise when there is reliance on the consent of individuals and their families with histories of serious illnesses. They say what they would like to see done in the USA and Canada to enhance education of the public, healthcare professionals, and hospitals about the importance of protecting the genetic heritage of families with histories of serious illnesses.
Family Caregivers Unite!
Archives Available on VoiceAmerica Variety Channel
Family caregivers are the people who provide care to partners, parents, children, brothers, sisters, cousins, friends, neighbors and even co-workers. They are the people who provide care when everyone else has gone home. They are the people who organize the functioning of the home for the person with special needs, and for the family as a whole. They are the coordinators of care, the managers of appointments, the preventers of loneliness, and the makers of decisions even to the point of Power of Attorney. And they are so often people who themselves are burdened with their own health challenges and who may be in only marginally better health than the persons to whom they are providing family caregiving.
Dr. Gordon Atherley
Dr Gordon Atherley holds the British equivalent of the Canadian PhD and MD degrees, and LLD, Honoris Causa, from Canada’s Simon Fraser University. His awards include Fellow of the Royal Society of Arts, UK. His medical specialties are occupational medicine and public health.
As first President and Chief Executive Officer of the Canadian Centre for Occupational Health and Safety, the Canadian equivalent of the US National Institute of Occupational Safety and Health, he led the creation of Canada’s electronic information service in occupational health and safety, now used in more than 40 countries.
In academia, he held senior, tenured, full-time positions, including departmental chair, in university faculties of physics, engineering, and medicine. He is the author of a textbook and numerous articles and publications.
Since retiring from medical practice, he’s built up Greyhead Associates, which critically researches the safety, effectiveness and fairness of health services for persons with special needs.
Through Virtual Care International, a company of which he’s President, he’s involved in providing sensible technology to family caregivers to help them with their responsibilities, workloads, and concerns.
Now an activist, he urges family caregivers to unite because, more and more, it’s not just their families who depend on them, it’s also the healthcare system as a whole, as it struggles to meet more and more needs of more and more people.