ABCs of DNA: Unraveling the Mystery of Genetic Info for Consumers
CE for Philadelphia Regional Chapter of MLA
30th July 2013
Carrie L Iwema, PhD, MLS, AHIP
INTRO
GATTACA trailer (2:29): https://www.youtube.com/watch?v=hWjlUj7Czlk
BASIC CONCEPTS
Broad Timeline of Genetics (12:21): https://class.coursera.org/amnhgenetics-001/lecture/download.mp4?lecture_id=27
DNA from the Beginning: http://www.dnaftb.org/
NGS costs: http://www.genome.gov/sequencingcosts/
Human Genome Project: http://web.ornl.gov/sci/techresources/Human_Genome/index.shtml
Genome Wide Association Studies (GWAS): http://gwas.nih.gov
dbGAP: http://www.ncbi.nlm.nih.gov/gap
PheGenI: http://www.ncbi.nlm.nih.gov/gap/phegeni
GWAS failure or success? http://scienceblogs.com/geneticfuture/2009/04/16/personal-genomics-is-not-dead/
ENCODE: Encyclopedia of DNA Elements (4:38): http://www.youtube.com/watch?v=Y3V2thsJ1Wc
About ENCODE: http://genome.ucsc.edu/ENCODE/
ENCODE explorer: http://www.nature.com/encode/#/threads
ENCODE overview: http://www.genome.gov/10005107
National Human Genome Research Institute: http://www.genome.gov/
GenomeTV: http://www.genome.gov/GenomeTV/
Genomics in Medicine Lecture Series: http://www.genome.gov/27553517
The Story of You (4:40): http://www.youtube.com/watch?v=TwXXgEz9o4w
PERSONAL GENOMICS
GENOME: The Future Is Now WEBISODE 1 (7:22): http://www.youtube.com/watch?v=mVZI7NBgcWM
Personal Genome Project: http://www.personalgenomes.org/
PGP Participation Overview: http://www.personalgenomes.org/why-participate
Personal Genetics Education Project: http://www.pged.org/
Direct-To-Consumer Companies:
23andMe: https://www.23andme.com/
Pathway Genomics: https://www.pathway.com/
Ancestry.com: http://www.ancestry.com/
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Gene by Gene: http://www.genebygene.com/
The Genographic Project: https://genographic.nationalgeographic.com/
Genetic Testing Company by Diseases Tested: http://www.dnapolicy.org/resources/DTCTableAug2011Alphabydisease.pdf
Pathway Genomics Pathway Fit: https://www.pathway.com/dna-reports/pathway-fit
Whole Living Diet Code Article: http://www.wholeliving.com/210970/diet-code-will-personalized-weight-loss-plans-work
Athleticode: http://athleticode.com/
CDC Genomics & Health Impact Blog: http://blogs.cdc.gov/genomics/2012/07/26/think-after-you-spit/
Regulation of DTC tests: http://www.ncbi.nlm.nih.gov/pubmed/20921893
Campus Genetics: http://www.genomeweb.com/blog/campus-genetics
SNPedia: http://www.snpedia.com/index.php/SNPedia
Promethease: http://www.snpedia.com/index.php/Promethease
openSNP: http://opensnp.org/
23andMe & CureTogether: https://www.23andme.com/curetogether_connections/
CureTogether: http://curetogether.com/
Crowdsourcing example: http://blog.23andme.com/23andme-research/what-patients-say-works-for-adhd/
PERSONALIZED MEDICINE
Four P’s: http://www.wired.com/politics/law/magazine/16-10/sl_hood
Institute for Systems Biology: https://www.systemsbiology.org/hood-group
PharmGKB: http://www.pharmgkb.org/
American College of Medical Genetics and Genomics: http://www.acmg.net/
Incidental findings discussions:
http://www.genomeweb.com/blog/fantasy-world-incidental-findings
http://www.genomesunzipped.org/2013/03/no-choice-for-you.php
http://www.genomesunzipped.org/2013/03/do-we-have-an-obligation-to-look.php
http://thednaexchange.com/2013/04/03/morality-and-reality-two-arguments-in-favor-of-the-recommendationsfor-return-of-incidental-findings-released-by-the-acmg/
Genetic discrimination definition: http://ghr.nlm.nih.gov/handbook/testing/discrimination
Genetic discrimination fact sheet: http://www.genome.gov/10002328
Genetic Information Nondiscrimination Act (GINA): http://www.dnapolicy.org/gina/
CA extension of anti-genetic discrimination laws: http://blog.23andme.com/news/california-governor-signs-law-to-protectagainst-genetic-discrimination/
Genome Statute and Legislation Database: http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm
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MYRIAD Gene Patent Litigation: http://www.genomicslawreport.com/index.php/category/badges/myriad-gene-patentlitigation/
ACLU & Gene Patenting: http://www.aclu.org/technology-and-liberty/biological-technologies
SciShow Patenting Person Parts (3:32): http://www.youtube.com/watch?v=kUpgfARGmXs
DNA Patent Database: http://dnapatents.georgetown.edu/
US Patent and Trademark Office: http://www.uspto.gov/
Allerca: http://www.allerca.com/
Bioethics Research Library at Georgetown University: http://bioethics.georgetown.edu/nirehg/
Ethical, Legal, and Social Implications (ELSI) of Genetic Knowledge:
http://www.genome.gov/25019880%20bioethics.georgetown.edu/nirehg/
ELSI Research Program: http://www.genome.gov/ELSI/
Presidential Commission for the Study of Bioethical Issues: Privacy and Progress in Whole Genome Sequencing:
http://bioethics.gov/sites/default/files/PrivacyProgress508.pdf
Privacy Webinar Series: http://www.geneticalliance.org/webinars.privacy
Consumer perceptions:
http://www.nejm.org/doi/full/10.1056/NEJMoa1011893
http://www.nature.com/news/2011/110112/full/news.2011.12.html
http://blog.23andme.com/23andme-research/few-worry-about-genetic-testing/
http://blogs.plos.org/dnascience/2012/11/08/direct-to-consumer-genetic-testing-a-new-view/
http://blog.23andme.com/health-traits/23andcuriosity/
Learning from one’s genome (5:08): http://www.youtube.com/watch?v=9JE-djHSyLc
CONSUMERS
NOVA Genetic Testing Scenarios: http://www.pbs.org/wgbh/nova/body/genetic-testing-dilemmas-intro.html
Genetic testing impact on family: http://www.genomesunzipped.org/2010/10/why-public-genomics-is-not-a-purelypersonal-decision.php
Henrietta Lacks controversy:
http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html
http://blogs.discovermagazine.com/gnxp/2013/03/henrietta-lacks-genome-and-familial-consent
http://www.michaeleisen.org/blog/?p=1341
http://phylogenomics.blogspot.com/2013/03/hela-genome-sequenced-wo-obtaining.html
http://www.genomesunzipped.org/2013/03/henrietta-lackss-genome-sequence-has-been-publicly-available-foryears.php
http://www.homolog.us/blogs/2013/03/27/pulling-hela-from-public-domain-sets-a-bad-scientific-precedent/
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http://www.g3journal.org/content/early/2013/03/11/g3.113.005777.abstract
http://www.nature.com/news/genetic-privacy-needs-a-more-nuanced-approach-1.12363
NPR $1000 Genome series: http://www.npr.org/templates/archives/archive.php?thingId=161373082
Chromosomal microarray technology: http://www.usatoday.com/story/news/nation/2012/11/15/genetic-testingfetus/1707445/
Noninvasive fetal sequencing: http://blog.23andme.com/health-traits/noninvasive-sequencing-of-a-human-fetus/
NY Times article on NFS: http://www.nytimes.com/2012/06/07/health/tests-of-parents-are-used-to-map-genes-of-afetus.html
American Board of Genetic Counseling: http://www.abgc.net/ABGC/AmericanBoardofGeneticCounselors.asp
Family tree tool: http://www.nsgc.org/About/FamilyHistoryTool/DrawYourFamilyTree/tabid/227/Default.aspx
Genes in Life: http://www.genesinlife.org/
Family History resources:
23andMe Relative Finder: http://www.youtube.com/watch?v=d2hlr-6LEos
American Society of Human Genetics: http://www.ashg.org/
National Society of Genetic Counselors: http://www.nsgc.org/
My Family Health Portrait: https://familyhistory.hhs.gov/fhh-web/home.action
Genetic Alliance: http://www.geneticalliance.org/
NHGRI resources: http://www.genome.gov/27527640
Genetics Home Reference on Genetic Counseling: http://ghr.nlm.nih.gov/handbook/consult
Gene Tests: http://www.genetests.org/
Genomics Law Report on FDA LDT regulation: http://www.genomicslawreport.com/index.php/category/badges/fda-ldtregulation/
Genetic Testing Registry: http://www.ncbi.nlm.nih.gov/gtr/
Genetics Home Reference: http://ghr.nlm.nih.gov/
GHR Scavenger Hunt: Scavenger Hunt: http://ghr.nlm.nih.gov/download/Explore.pdf
Talking Glossary of Genetic Terms: http://www.genome.gov/glossary/index.cfm
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