Community Action-Oriented Genomics Policy Table
GA = Genetic Alliance; GP = Genetics and Public Policy Center, Johns Hopkins University
NCSL = National Conference of State Legislatures; NCHPEG = National Coalition for Health Professional Education in Genetics
Issue Areas
Healthcare
Reform



better
oversight of
genetic
technologies
creation of a
public registry
for genetic
tests
elimination of
funding silos
Health
Information
Technologies



balancing
privacy and
access
informed
consumer
decisionmaking
use of
consumer
focused
technology
Organizations
Organizational Web sites
Legislation & Other Policies
Policy Web sites

GA


GP
NCSL


Public Notice of NIH
Genetic Testing Registry
Position Statement on
Governmental Earmarking



www.geneticalliance.org/
issues.reform
www.dnapolicy.org
www.ncsl.org

GA


NCSL


Health
Information
Technology
Champions
HealthITNo
wCoalition

Health Information
Technology for Economic
and Clinical (HITECH) Act
Cmte. on Energy and
Commerce Hearing on
HITECH Act


www.geneticalliance.org/
issues.hit
www.ncsl.org/default.asp
x?tabid=19753
http://hitchampions.org







www.healthitnow.org/?p
=223
www.ncbi.nlm.nih.gov/g
tr
www.geneticalliance.org
/statements.earmark
www.govtrack.us/congr
ess/bill.xpd?bill=s111350
http://waysandmeans.h
ouse.gov/media/pdf/11
0/hit2.pdf
http://energycommerce.
house.gov
Issue Areas
Genetic
Discrimination





health
insurance
protections
employment
protections
elimination of
discrimination
loopholes
racial-ethnic
discrimination
racial-ethnic
disparities
Access




to genetic
services
to genetic test
information
to genetic
research
results
to medically
necessary
foods
Organizations
Organizational Web sites
Legislation & Other Policies
Policy Web sites

GA


Genetic Information
Nondiscrimination Act




GP
NCHPEG
Coalition for
Genetic
Fairness
Genetics
Equity
Network




Statement on Healthcare
Reform and Genetic
Discrimination


Minority Health
Improvement and Health
Disparity Elimination Act


GA






GP
NCSL
National
Organization
for Rare
Disorders



Prenatally and Postnatally
Diagnosed Conditions
Awareness Act
SACGHS Oversight of
Genetic Testing Report
Consolidated
Appropriations Act NIH
Public Access Policy
NIH Genetic Testing
Registry Press Release
MCHS Title V


State Medical Foods
Legislation


Genomics and
Personalized Medicine Act



www.geneticalliance.org/
issues.discrimination
www.dnapolicy.org/gina
www.nchpeg.org
http://geneticfairness.org
http://geneticsequitynet
work.org
www.geneticalliance.org/
issues.access
www.dnapolicy.org
www.ncsl.org
www.rarediseases.org/pr
ograms/medication




Personalized
Medicine

creation of a
specialized
office



GA
GP
Consumer



www.geneticalliance.org
www.dnapolicy.org
www.geneticalliance.org/



www.govtrack.us/congr
ess/bill.xpd?bill=h110493
www.dnapolicy.org/new
s.enews.article.nocatego
ry.php?action=detail&ne
wsletter_id=44&article_i
d=206
http://www.govtrack.us
/congress/bill.xpd?bill=s
110-1576
www.govtrack.us/congr
ess/bill.xpd?bill=s1101810
http://oba.od.nih.gov/o
ba/SACGHS/reports/SAC
GHS_oversight_report.p
df
http://publicaccess.nih.g
ov/policy.htm
www.nih.gov/news/heal
th/mar2010/od-18.htm
http://mchb.hrsa.gov/pr
ograms/blockgrant/over
view.htm
www.ncsl.org/default.as
px?tabid=13865
www.govtrack.us/congr
ess/bill.xpd?bill=h1115440
Issue Areas







informed
consent and
storage issues
program
expansion and
standardizeation
family support
and education
public health
surveillance
Biobanking


GA


GP

Legislation & Other Policies
Policy Web sites
issues.testing.consumers

Personalized Healthcare
Initiative

http://www.hhs.gov/my
healthcare/index.html
www.geneticalliance.org/
issues.testing.consumers
www.dnapolicy.org

Cmte. on Energy and
Commerce Hearing on DTC
Genetic Testing
General Accounting Office
Congressional Testimony
FDA Actions

http://energycommerce.
house.gov

www.gao.gov/new.item
s/d10847t.pdf
www.fda.gov/NewsEven
ts/Testimony/ucm21992
5.htm
www.dnapolicy.org/reso
urces/DTCStateLawChart
.pdf
genetic test
quality and
regulation
benefits and
risks of
promotion
consumer
education
Newborn
Screening

Organizational Web sites
Task Force
on Genetic
Testing
adequate
evaluation
creation of a
national
biobank
Direct-toConsumer
Genetic Testing

Organizations
newborn
blood spot and
cord blood
storage



State DTC statutes and
regulations

Newborn Screening Saves
Lives Act

GA


Natl
Newborn
Screening &
Genetics
Resource
Center
National
Organization
for Rare
Disorders
Save Babies
Through
Screening
Foundation


www.savebabies.org/scre
ening_info.html

Genetic
Alliance
BioBank

www.biobank.org/english
/view.asp?x=1




www.geneticalliance.org/
issues.nbs
http://genes-rus.uthscsa.edu/index.htm





Screening for Health of
Infants and Newborns Act



www.rarediseases.org

www.geneticalliance.org
/issues.nbs.act
www.govtrack.us/congr
ess/bill.xpd?bill=s1101858
www.geneticalliance.org
/issues.nbs.legislation2
www.govtrack.us/congr
ess/bill.xpd?bill=h1102889
www.cdcfoundation.org
/newbornscreening
Newborn Screening
Translation Research
Initiative (CDC)
Screening, Technology and
Research in Genetics
(STAR-G) Project (HRSA)


www.newbornscreening
.info/links.html
Genomics and
Personalized Medicine Act

www.govtrack.us/congr
ess/bill.xpd?bill=h1115440
Issue Areas
Organizations
Organizational Web sites
Legislation & Other Policies
Policy Web sites



http://biobank.mayo.edu
/index.cfm

Stem Cell Therapeutic and
Research Act


http://biobanktalk.ca

Family Cord Blood Banking
Act


www.michigan.gov/mdch
/0,1607,7-1322942_4911_4916209738--,00.html


public
consultation
informed
consent
commercializat
ion
Human
Embryonic Stem
Cell Research




right to health
vs. right to life
donor
informed
consent and
protections
acceptable
uses
question of
alternatives









Biobanking Olmsted
County
Biobanking
– British
Columbia
Michigan
Biotrust for
Health
GP
Genetics
Policy
Institute
Coalition for
the
Advanceme
nt of
Medical
Research
Americans
for Cures
Foundation
Adult Stem
Cell
Research
Network
National
Right to Life
Do No Harm




www.dnapolicy.org
www.genpol.org
www.camradvocacy.org






www.americansforcures.
org

www.ascrnetwork.com

www.nrlc.org

www.stemcellresearch.or
g

Cord Blood Education and
Awareness Act

Presidential Executive
Order (EO) 13505
Stem Cell Research
Enhancement Act

Alternative Pluripotent
Stem Cell Therapies
Enhancement Act
Pending Federal
Legislation
Dickey-Wicker
Amendment to Omnibus
Appropriations Bill





www.govtrack.us/congr
ess/bill.xpd?bill=h1092520
www.cellmedicine.com/
act-of-congress.asp
http://frwebgate.access.
gpo.gov/cgibin/getdoc.cgi?dbname=
111_cong_bills&docid=f:
h1718ih.txt.pdf
www.govtrack.us/congr
ess/bill.xpd?bill=h1112107
www.whitehouse.gov
www.govtrack.us/congr
ess/bill.xpd?bill=h111873
www.govtrack.us/congr
ess/bill.xpd?bill=h110322
http://stemcells.nih.gov
/policy/legislation.asp
www.dnapolicy.org/poli
cy.international.php?law
s_id=36&action=detail
www.govtrack.us/congr
ess/bill.xpd?bill=h1111105
GA = Genetic Alliance; GP = Genetics and Public Policy Center, Johns Hopkins University
NCSL = National Conference of State Legislatures; NCHPEG = National Coalition for Health Professional Education in Genetics