Questions of Ethics in Collecting Family Genetic Data
May 6, 2014
Hosted by Dr. Gordon Atherley
Dr. Alice Virani specializes in the social, ethical and cultural implications of new genomic technologies. She holds a Masters in Public Health, a Masters in Human Sciences, and a PhD in medical genetics and applied ethics. She describes her work as a clinical ethicist. She explains family genetic data and why it raises questions of ethics. She says what she sees as the most important ethical questions that arise when family genetic data could be misused or abused, when it is widely distributed electronically and stored indefinitely in computers, and when people are asked to give consent to disclosure of their family genetic data to healthcare providers. She discusses the answers she sees to the questions. She says what more she would like to do and see done to answer the ethical questions that arise in connection with family genetic data in our increasingly computerized world. She shares her message for people who are being asked to give consent for use of their genetic data.
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.