Current guidelines for returning research results in genomic studies often focuses on protecting patients, but trends are changing. The findings above suggest that ADNI policy may first want to address those with mild cognitive impairment. ADNI investigators need guidance on how to return results and monitor the disclosure process. Additionally, research is required on understanding the value of returning results. This study provides important information as ADNI assesses its policy.
About the Study:
All ADNI investigators and personnel were invited to complete an anonymous online survey. Questions were both fixed choice and free-text questions. Data collection took place between March 2012 and April 2012. A total of 159 individuals responded (52% overall response rate).