Ontology highlight
ABSTRACT:
SUBMITTER: Hartman AL
PROVIDER: S-EPMC6974597 | biostudies-literature | 2020 Feb
REPOSITORIES: biostudies-literature
Hartman Adam L AL Hechtelt Jonker Anneliene A Parisi Melissa A MA Julkowska Daria D Lockhart Nicole N Isasi Rosario R
European journal of human genetics : EJHG 20190919 2
Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review ...[more]