Life as a numerator: Putting the person in personal genomics. How about putting people first in research?

The Study is Open: Participants Are Now Recruiting Investigators describes several projects seeking to put people at the center. Is it lip service or more?

Learning Genetics: how we found the gene for our kids’ disease and established a research program.

People as Partners in Research
Terry SF, Patrick-Lake B. Hearing voices: FDA seeks advice from patients. Sci Transl Med. 2015 Nov 11;7(313):313ed12.; doi: 10.1126/scitranslmed.aad5866. PubMed PMID: 26560354.

Lambertson KF, Damiani SA, Might M, Shelton R, Terry SF. Participant-Driven Matchmaking in the Genomic Era. Hum Mutat. 2015 Oct;36(10):965-73. doi: 10.1002/humu.22852. Epub 2015; Aug 27. PubMed PMID: 26252162.

Terry SF. Disease advocacy organizations catalyze translational research. Front Genet. 2013 Jun 4;4:101.; PMID: 23761807

Terry SF. Don't Just Invite Us to the Table: authentic community engagement. Genet Test Mol Biomarkers. 2013

Terry SF, Bonhomme N. Nothing About Us Without Us. Genet Test Mol Biomarkers. 2013

Sharon F. Terry, Patrick F. Terry, Katherine A. Rauen, Jouni Uitto, Lionel G. Bercovitch. Advocacy groups as research organizations: the PXE International example. Nature Review Genetics, 2007

Sharon F. Terry, Patrick F. Terry. A Consumer Perspective on Forensic DNA Banking. Journal of Law, Medicine & Ethics, 2006

Drug Development
Baxter K, Horn E, Gal-Edd N, Zonno K, O'Leary J, Terry PF, & Terry SF. An End to the Myth: there is no drug development pipeline. Sci Transl Med. 2013

Terry SF, Shelton R, Biggers G, Baker D, Edwards K. The Haystack is Made of Needles. Genet Test Mol Biomarkers, 2013

Terry SF. The Tension Between Policy and Practice in Returning Research Results and Incidental Findings in Genomic Biobank Research. MINN. J. L. SCI. & TECH., 2012

Clinical Trials
David C. Landy, MPH, Margaret A. Brinich, BA, Mary Ellen Colten, PhD, Elizabeth J. Horn, PhD, MBI, Sharon F. Terry, MA, Richard R. Sharp, PhD. How disease advocacy organizations participate in clinical research: A survey of genetic organizations. Genetics in Medicine, 2011

Sharon F. Terry, Patrick F. Terry. Power to the People: Participant Ownership of Clinical Trial Data. Science Translational Medicine, 2011

Sharon F. Terry. What do leaders of disease-specific advocacy organizations know about pharmacogenomics and biomarkers, anyway? Personalized Medicine, 2009

Alan Stockdale, Sharon F. Terry. Advocacy Groups and the New Genetics. Double-Edged Helix, 2002

Sharon F. Terry, Charles D. Boyd. Researching the Biology of PXE: Partnering in the Process; American Journal of Medical Genetics, 2001

Terry SF. The Day the President of the United States Said "That Data is Mine". Genet Test Mol Biomarkers. 2016 Mar 22. [Epub ahead of print] ; PubMed PMID:27003240.

Terry SF, Leshner AI. Assessing NIH's Big Idea. Sci Transl Med. 2013 Jul 31;5(196):196ed11. PMID: 23903753

Lambertson K, Terry SF. Free The Data. Genet Test Mol Biomarkers. 2014 Jan;18(1):1-2.; PMID: 24401097

Terry SF. Accelerate medical breakthroughs by ending disease earmarks. Nature Review Genetics, 2010

Terry SF and Burke W. Banning Pens and Pads Misses the Main Point. The American Journal of Bioethics, 2003 Summer;3(3):63-5. PMID: 14594500

Terry SF. A call for participatory oversight. Genet Test Mol Biomarkers. 2014 Feb;18(2):71-2. ; PMID: 24506510