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):

BASIC CONCEPTS

Broad Timeline of Genetics (12:21):

DNA from the Beginning:

NGS costs:

Human Genome Project:

Genome Wide Association Studies (GWAS):

dbGAP:

PheGenI:

GWAS failure or success?

ENCODE: Encyclopedia of DNA Elements (4:38):

About ENCODE:

ENCODE explorer:

ENCODE overview:

National Human Genome Research Institute:

GenomeTV:

Genomics in Medicine Lecture Series:

The Story of You (4:40):

PERSONAL GENOMICS

GENOME: The Future Is Now WEBISODE 1 (7:22):

Personal Genome Project:

PGP Participation Overview:

Personal Genetics Education Project:

Direct-To-Consumer Companies:

23andMe:

Pathway Genomics:

Ancestry.com:

Gene by Gene:

The Genographic Project:

Genetic Testing Company by Diseases Tested:

Pathway Genomics Pathway Fit:

Whole Living Diet Code Article:

Athleticode:

CDC Genomics & Health Impact Blog:

Regulation of DTC tests:

Campus Genetics:

SNPedia:

Promethease:

openSNP:

23andMe & CureTogether:

CureTogether:

Crowdsourcing example:

PERSONALIZED MEDICINE

Four P’s:

Institute for Systems Biology:

PharmGKB:

American College of Medical Genetics and Genomics:

Incidental findings discussions:

Genetic discrimination definition:

Genetic discrimination fact sheet:

Genetic Information Nondiscrimination Act (GINA):

CA extension of anti-genetic discrimination laws:

Genome Statute and Legislation Database:

MYRIAD Gene Patent Litigation:

ACLU & Gene Patenting:

SciShow Patenting Person Parts (3:32):

DNA Patent Database:

US Patent and Trademark Office:

Allerca:

Bioethics Research Library at Georgetown University:

Ethical, Legal, and Social Implications (ELSI) of Genetic Knowledge:

ELSI Research Program:

Presidential Commission for the Study of Bioethical Issues: Privacy and Progress in Whole Genome Sequencing:

Privacy Webinar Series:

Consumer perceptions:

Learning from one’s genome (5:08):

CONSUMERS

NOVA Genetic Testing Scenarios:

Genetic testing impact on family:

Henrietta Lacks controversy:

NPR $1000 Genome series:

Chromosomal microarray technology:

Noninvasive fetal sequencing:

NY Times article on NFS:

American Board of Genetic Counseling:

Family tree tool:

Genes in Life:

Family History resources:

23andMe Relative Finder:

American Society of Human Genetics:

National Society of Genetic Counselors:

My Family Health Portrait:

Genetic Alliance:

NHGRI resources:

Genetics Home Reference on Genetic Counseling:

Gene Tests:

Genomics Law Report on FDA LDT regulation:

Genetic Testing Registry:

Genetics Home Reference:

GHR Scavenger Hunt: Scavenger Hunt:

Talking Glossary of Genetic Terms:

NN/LM-MAR: ABCs of DNA (Iwema, Sept 2013) Page 1