Genomic Data-sharing: What Will Be Our Legacy?
Overview
Affiliations
Prior to 1974, the Tuskegee Syphilis experiments, expansive use of the HeLa cells, and other blatant instances of research abuse pervaded the medical research field. Ongoing challenges to informed consent, privacy and data-sharing will influence the stories that research participants today share with future generations. This has significant implications for the advancement of genomic science, and the public's perception of genomic research.
The reproducibility of COVID-19 data analysis: paradoxes, pitfalls, and future challenges.
Di Serio C, Malgaroli A, Ferrari P, Kenett R PNAS Nexus. 2023; 1(3):pgac125.
PMID: 36741433 PMC: 9896906. DOI: 10.1093/pnasnexus/pgac125.
International Society of Psychiatric Genetics Ethics Committee: Issues facing us.
Lazaro-Munoz G, Sabatello M, Huckins L, Peay H, Degenhardt F, Meiser B Am J Med Genet B Neuropsychiatr Genet. 2019; 180(8):543-554.
PMID: 31124312 PMC: 6861601. DOI: 10.1002/ajmg.b.32736.
Dick D, Barr P, Guy M, Nasim A, Scott D Am J Addict. 2017; 26(5):486-493.
PMID: 28240821 PMC: 5884102. DOI: 10.1111/ajad.12495.
The need to redefine genomic data sharing: A focus on data accessibility.
van Schaik T, Kovalevskaya N, Protopapas E, Wahid H, Nielsen F Appl Transl Genom. 2016; 3(4):100-4.
PMID: 27294022 PMC: 4888834. DOI: 10.1016/j.atg.2014.09.013.
Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.
Beskow L Annu Rev Genomics Hum Genet. 2016; 17():395-417.
PMID: 26979405 PMC: 5072843. DOI: 10.1146/annurev-genom-083115-022536.