کد مقاله کد نشریه سال انتشار مقاله انگلیسی نسخه تمام متن
3053688 1580018 2014 7 صفحه PDF دانلود رایگان
عنوان انگلیسی مقاله ISI
Ethical management in the constitution of a European database for leukodystrophies rare diseases
ترجمه فارسی عنوان
مدیریت اخلاقی در تشکیل یک پایگاه داده اروپایی برای بیماری های نادر لوس کبدی
کلمات کلیدی
بیماری نادر، لکوودیستروفی پایگاه داده بهداشتی، کمیته اخلاق، مدیریت اخلاقی
موضوعات مرتبط
علوم زیستی و بیوفناوری علم عصب شناسی علوم اعصاب تکاملی
چکیده انگلیسی

BackgroundThe EU LeukoTreat program aims to connect, enlarge and improve existing national databases for leukodystrophies (LDs) and other genetic diseases affecting the white matter of the brain. Ethical issues have been placed high on the agenda by pairing the participating LD expert research teams with experts in medical ethics and LD patient families and associations. The overarching goal is to apply core ethics principles to specific project needs and ensure patient rights and protection in research addressing the context of these rare diseases.AimThis paper looks at how ethical issues were identified and handled at project management level when setting up an ethics committee.MethodsThrough a work performed as a co-construction between health professionals, ethics experts, and patient representatives, we expose the major ethical issues identified.ResultsThe committee acts as the forum for tackling specific issues tied to data sharing and patient participation: the thin line between care and research, the need for a charter establishing the commitments binding health professionals and the information items to be delivered. Ongoing feedback on the database, including delivering global results in a broad-audience format, emerged as a key recommendation. Information should be available to all patients in the partner countries developing the database and should be scaled to different patient profiles.ConclusionThis work led to a number of recommendations for ensuring transparency and optimizing the partnership between scientists and patients.

ناشر
Database: Elsevier - ScienceDirect (ساینس دایرکت)
Journal: European Journal of Paediatric Neurology - Volume 18, Issue 5, September 2014, Pages 597–603
نویسندگان
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