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Working in partnership with support services in the era of the "new genetics"
Kristine K Barlow-Stewart1, Clara L Gaff
1Centre for Genetics Education, Royal North Shore Hospital, PO Box 317, St Leonards, NSW 1590, Australia. kbarlow@med.usyd.edu.au
Abstract:
Patient care in the "new genetics" era encompasses not only the diagnosis of a genetic condition or risk, but also managing the psychosocial, familial and ethical sequelae. Partnerships between the medical professional and expert clinical genetics services, support groups, registries and genetics education services provide a framework for this management. More than 750 Australian support groups assist individuals and families with genetic conditions through contact with peers, information and education resources for patients and professionals, practical advice about coping and advocacy.