Grant: Travel Awards - Institute Community Support

The aging global population has been identified as an important public health and clinical research priority across both developed and developing countries. Genetic technologies are important tools used to provide insight into human health, including diseases that occur most frequently in elderly populations such as Alzheimers. In order to promote medical discoveries in the field of aging and dementia, international researchers must collaborate by sharing their genetic data. This is particularly challenging due to the sensitive nature of the data being shared and international differences in data protection law. Most challenging, however, is that many potential research participants cannot consent to sharing their data alone due to their reduced decision-making ability. This study therefore examines the literature for ethical, legal, and social considerations of data sharing in the dementia patient population, specifically. It compares polices across North America and Europe, and proposes recommendations for improving data sharing in light of the comparative findings. Better understanding these data sharing policies will benefit researchers working in the field of dementia diseases, as well as policy makers who will be responsible both for protecting patient data and encouraging clinical research.