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  1.  22
    Model consent clauses for rare disease research.Minh Thu Nguyen, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé, Durhane Wong-Rieger & Bartha Maria Knoppers - 2019 - BMC Medical Ethics 20 (1):1-7.
    Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...)
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  2.  83
    The Disclosure of Genetic Information: A Human Research Ethics Perspective.Danielle E. Dye, Leanne Youngs, Beverley McNamara, Jack Goldblatt & Peter O’Leary - 2010 - Journal of Bioethical Inquiry 7 (1):103-109.
    Increasing emphasis on genetic research means that growing numbers of human research projects in Australia will involve complex issues related to genetic privacy, familial information and genetic epidemiology. The Office of Population Health Genomics (Department of Health, Western Australia) hosted an interactive workshop to explore the ethical issues involved in the disclosure of genetic information, where researchers and members of human research ethics committees (HRECs) were asked to consider several case studies from an ethical perspective. Workshop participants used a variety (...)
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  3. Cost-effectiveness of predictive genetic tests for familial breast and ovarian cancer.Nikki Breheny, Elizabeth Geelhoed, Jack Goldblatt & Peter O'Leary - 2005 - Genomics, Society and Policy 1 (2):67-79.
    Aim: To examine the relative cost-effectiveness of predictive genetic tests for familial breast and ovarian cancer provided by Genetic Services of Western Australia. Methods: The relative cost-effectiveness was assessed using a decision analytic model. Results: The cost and outcomes of genetic testing was compared in first-degree relatives of known BRCA1/2 mutation-carriers who have a 50% risk of carrying the mutated gene to individuals with the same a priori risk but who do not undergo a genetic test . Since genetic testing (...)
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