Affiliations: [a] Reta Lila Weston Laboratories and Department of Molecular Neuroscience, UCL Institute of Neurology, London, UK | [b] Department of Molecular and Human Genetics, Baylor College of Medicine, One Baylor Plaza, Houston, TX, USA
Correspondence:
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Correspondence to: John Hardy, Ph.D., Reta Lila Weston Laboratories and Department of Molecular Neuroscience, UCL Institute of Neurology, Queen Square, London WCN 3BG, UK. Tel.: +44 20 7837 3611; Fax: +44 20 7833 1016; E-mail: [email protected].
Abstract: Despite progress in human gene discovery, we believe that regulations regarding subject protections have not fully kept pace. We believe that weaknesses in the current regulatory system include variations in the understanding of genetic principles and in the application of regulations. We discuss what our thoughts regarding steps needed to create an environment where information is gathered from all parties involved, including via research into many of the remaining questions, in order to ensure that research participant protection is adequate, appropriate and is an evolving process which will allow it to keep pace with the rapid advances in human genetics.
