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Showing posts with the label informed consent

Ethical Genealogy

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Have you heard of the new book by journalist Libby Copeland: The Lost Family: How DNA Testing is Upending Who We Are . American Ancestors and the Boston Public Library had an interview and Q & A with her this week, full of stories and insight. I was struck by the advice from one of the "search angels" in her book, who says that she no longer tries to persuade people to DNA test. After hearing Judy Russell's webinar  DNA Rights and Wrongs: The Ethical Side of Testing , I think I would have to agree. To our cousins or others we would like to test, we owe a complete description of what testing entails, and we need to offer them fine-grained choices such as:  whether their profile will have their name or an anonymised nickname, what email will be associated with a kit, whether or not they will allow sharing of the test results, and to whom, whether or not they want to access the test results, if there are unexpected results, do they want to know those results? and so m...