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Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: Views from Professionals, Syndrome Support Groups and Parents.

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Pannebakker, Merel 


BACKGROUND: Advances in medical genetics herald the possibility that health and social care services could be more responsive to the needs arising from a person's genotype. This development may be particularly important for those men and women whose learning disability (known internationally as intellectual disability) is linked to a neurodevelopmental condition of genetic origin. METHOD: This possibility is tested through interviews with samples of (i) professional 'opinion former' with nationally recognised clinical and/or academic interests in learning disabilities and genetics; (ii) representatives of syndrome organisations prompting the interests of families where someone has a neurodevelopmental condition, and parent-members of these same organisations. RESULTS: The reporting and discussion of the interview data considers the possibility that notwithstanding the successes of the social model of disability, the health and wellbeing of people whose learning disability is associated with a neurodevelopmental condition could be better served by a more medicalised approach to their interests. CONCLUSION: While a more medicalised approach to this populations' disabilities would appear to be beneficial, so long as it is focused on interventions to improve their lives rather than catalogues their deficiencies.



genetics, health inequalities, healthcare, intellectual disability, neurodevelopment syndromes, social care, Disabled Persons, Female, Health Status Disparities, Humans, Intellectual Disability, Interviews as Topic, Male, Parents, Self-Help Groups, Social Work

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J Appl Res Intellect Disabil

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Medical Research Council (G0900035)
This work was supported by a grant from the Medical Research Council under its Life-Long Health and Wellbeing initiative, project reference no. G0900035. Additional support for the preparation of this article came from the Health Foundation. The research was also supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire and Peterborough NHS Foundation Trust.