Key Points
• For patients and families an accurate, timely diagnosis is key to understanding the situation in which they find themselves.
• Effective ethical genetic services deliver not just a diagnosis but also the information and support necessary for making informed decisions and making plans.
• The planning and development of genetic services must incorporate patient and family inputs if it is to focus on those aspects of genetic diseases that are of greatest significance to those affected.
• Regulation and legislation controlling the development and operation of clinical genetics in medicine must be appropriate and proportionate to the risks and benefits to be secured.
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References
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Ponder M, Statham H, Hallowell N, Moon JA, Richards M, Raymond FL. Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research. J Med Ethics. 2008; 34(9):690–4.
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Kent, A., McKeown, A., Lewis, C. (2010). Patient Perspectives on Genetic Testing. In: Kristoffersson, U., Schmidtke, J., Cassiman, J. (eds) Quality Issues in Clinical Genetic Services. Springer, Dordrecht. https://doi.org/10.1007/978-90-481-3919-4_39
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DOI: https://doi.org/10.1007/978-90-481-3919-4_39
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