Feasibility of De Identification of Genetic Data
August 25, 2014
Hosted by Dr. Gordon Atherley
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Jeremy Gruber, JD, is President and Executive Director of the Council for Responsible Genetics, http://www.councilforresponsiblegenetics.org/. He explains the Council’s work, genetic information, and why it warrants special protection. He highlights the greatest risks when protection is insufficient of genetic information linked to identifiable individuals and their genetic relatives and descendants. He says how genetic information in big databases could be linked to identifiable individuals even when their names are excluded from the databases. He explains de-identification of records kept in big databases and summarizes the Council’s position on de-identification now and in the future. He describes the Council’s work informing the public about protection of genetic information. He suggests two key questions that individuals should ask if a hospital requests their consent for disclosure of their genetic information, and what they should assume if a hospital makes no such request.
Family Caregivers Unite!
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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.