This past June, the Angelman Syndrome Foundation hosted its Scientific Symposium, the Foundation's annual forum where researchers, doctors and scientists discuss research in progress, share information and intelligence, and explore possible future research projects, all with the ultimate goal of finding treatments for Angelman syndrome. Out of past Scientific Symposiums have come research projects that have led to several research discoveries, which have positive implications for other rare disease research as well.
New for this year's Scientific Symposium, the Angelman Syndrome Foundation hosted a Dinner Debate that invited six internationally renowned and accomplished panelists who discussed "Ethical Considerations in Rare Disease Research." Extending the scope beyond Angelman syndrome and applying to all rare diseases, the panelists discussed a number of issues that provided tremendous insight for families of individuals with rare diseases and others who are considering participating in research studies. Each panelist incorporated his or her own experiences and perspective about this very sensitive subject matter. The topics discussed included:
- How study participants can be assured that researchers conducting clinical trials are doing so in an ethical manner
- The extent of which any experiment, research or trial data derived from human research should be available to parents or study participants
- Obligations of researchers in providing complete transparency about pre-clinical data used to proceed with clinical trials
- Educating and informing participants of the complex components of scientific trials and clinical research
- Ethical implications of assessing the development and comprehension of individuals with neurodevelopmental disorders
- And more!
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