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Right-to-Know, Right-to-Act Why Report Back on Exposures in EH Studies? Julia Brody, Silent Spring Institute, [email protected] PEPH Annual Meeting, December 2018

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Page 1: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Right-to-Know Right-to-Act

Why Report Back on Exposures in EH Studies

Julia Brody Silent Spring Institute brodysilentspringorg

PEPH Annual Meeting December 2018

Why report back

1 Justice ndash ldquoright thing to dordquo ndash

builds trust

2 Learning ndash for participants and

researchers

3 Action ndash to promote health

SilentSpringorg

ldquoa lab of our ownrdquo

Brody et al 2005 EHP SilentSpringorg

Household Exposure Study

120 homes

89 EDCs

Air dust urine

Rudel et al 2003 ESampT

SilentSpringorg

CBPR values

bull Collaboration to address community issues

build capacity

bull Mutual respect open communication

bull Knowledge is power

bull Co-learning

bull Co-ownership of data

Schulz et al 1998 ARPH SilentSpringorg

NASEM consensus report

ldquohellipas a matter of reciprocity

respect transparency and trust

the return of results should be

routinely considered helliprdquo

NASEM 2018

SilentSpringorg

Ώϋ Φ ϋ ϋΎρ ρϋνΎϋΈ ΫήϦ ϱ ήϦΧ ρήΦϋΎΧΆ you do not know the cause or solution Thank you for doing the right thing morally and ethically for ρνΎΧ ϋΎρ ΎΧήνΦϋΎήΧ ϲΎϋ ϦρΉ

Hernick et al 2011 EHP

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 2: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Why report back

1 Justice ndash ldquoright thing to dordquo ndash

builds trust

2 Learning ndash for participants and

researchers

3 Action ndash to promote health

SilentSpringorg

ldquoa lab of our ownrdquo

Brody et al 2005 EHP SilentSpringorg

Household Exposure Study

120 homes

89 EDCs

Air dust urine

Rudel et al 2003 ESampT

SilentSpringorg

CBPR values

bull Collaboration to address community issues

build capacity

bull Mutual respect open communication

bull Knowledge is power

bull Co-learning

bull Co-ownership of data

Schulz et al 1998 ARPH SilentSpringorg

NASEM consensus report

ldquohellipas a matter of reciprocity

respect transparency and trust

the return of results should be

routinely considered helliprdquo

NASEM 2018

SilentSpringorg

Ώϋ Φ ϋ ϋΎρ ρϋνΎϋΈ ΫήϦ ϱ ήϦΧ ρήΦϋΎΧΆ you do not know the cause or solution Thank you for doing the right thing morally and ethically for ρνΎΧ ϋΎρ ΎΧήνΦϋΎήΧ ϲΎϋ ϦρΉ

Hernick et al 2011 EHP

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 3: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

ldquoa lab of our ownrdquo

Brody et al 2005 EHP SilentSpringorg

Household Exposure Study

120 homes

89 EDCs

Air dust urine

Rudel et al 2003 ESampT

SilentSpringorg

CBPR values

bull Collaboration to address community issues

build capacity

bull Mutual respect open communication

bull Knowledge is power

bull Co-learning

bull Co-ownership of data

Schulz et al 1998 ARPH SilentSpringorg

NASEM consensus report

ldquohellipas a matter of reciprocity

respect transparency and trust

the return of results should be

routinely considered helliprdquo

NASEM 2018

SilentSpringorg

Ώϋ Φ ϋ ϋΎρ ρϋνΎϋΈ ΫήϦ ϱ ήϦΧ ρήΦϋΎΧΆ you do not know the cause or solution Thank you for doing the right thing morally and ethically for ρνΎΧ ϋΎρ ΎΧήνΦϋΎήΧ ϲΎϋ ϦρΉ

Hernick et al 2011 EHP

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 4: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Household Exposure Study

120 homes

89 EDCs

Air dust urine

Rudel et al 2003 ESampT

SilentSpringorg

CBPR values

bull Collaboration to address community issues

build capacity

bull Mutual respect open communication

bull Knowledge is power

bull Co-learning

bull Co-ownership of data

Schulz et al 1998 ARPH SilentSpringorg

NASEM consensus report

ldquohellipas a matter of reciprocity

respect transparency and trust

the return of results should be

routinely considered helliprdquo

NASEM 2018

SilentSpringorg

Ώϋ Φ ϋ ϋΎρ ρϋνΎϋΈ ΫήϦ ϱ ήϦΧ ρήΦϋΎΧΆ you do not know the cause or solution Thank you for doing the right thing morally and ethically for ρνΎΧ ϋΎρ ΎΧήνΦϋΎήΧ ϲΎϋ ϦρΉ

Hernick et al 2011 EHP

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 5: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

CBPR values

bull Collaboration to address community issues

build capacity

bull Mutual respect open communication

bull Knowledge is power

bull Co-learning

bull Co-ownership of data

Schulz et al 1998 ARPH SilentSpringorg

NASEM consensus report

ldquohellipas a matter of reciprocity

respect transparency and trust

the return of results should be

routinely considered helliprdquo

NASEM 2018

SilentSpringorg

Ώϋ Φ ϋ ϋΎρ ρϋνΎϋΈ ΫήϦ ϱ ήϦΧ ρήΦϋΎΧΆ you do not know the cause or solution Thank you for doing the right thing morally and ethically for ρνΎΧ ϋΎρ ΎΧήνΦϋΎήΧ ϲΎϋ ϦρΉ

Hernick et al 2011 EHP

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 6: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

NASEM consensus report

ldquohellipas a matter of reciprocity

respect transparency and trust

the return of results should be

routinely considered helliprdquo

NASEM 2018

SilentSpringorg

Ώϋ Φ ϋ ϋΎρ ρϋνΎϋΈ ΫήϦ ϱ ήϦΧ ρήΦϋΎΧΆ you do not know the cause or solution Thank you for doing the right thing morally and ethically for ρνΎΧ ϋΎρ ΎΧήνΦϋΎήΧ ϲΎϋ ϦρΉ

Hernick et al 2011 EHP

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 7: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Ώϋ Φ ϋ ϋΎρ ρϋνΎϋΈ ΫήϦ ϱ ήϦΧ ρήΦϋΎΧΆ you do not know the cause or solution Thank you for doing the right thing morally and ethically for ρνΎΧ ϋΎρ ΎΧήνΦϋΎήΧ ϲΎϋ ϦρΉ

Hernick et al 2011 EHP

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 8: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Personalized results are more than a number

Boronow et al 2017 EHP Brody et al 2014 Env Health SilentSpringorg

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 9: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Learning

bull The ldquoexposure experiencerdquo

a new embodied knowledge of invisible pollution

Altman et al 2008 J Health amp Social Behavior

SilentSpringorg

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 10: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Conceptual shifts Pollution is personal

bull Chemicals of health concern are in people

bull Many sources

bull Irsquom highlow compared to others benchmarks

bull I can make changes but hellip

bull Reflections on family illness ldquotoxic trespassrdquo

bull My data contributes to science that can help

SilentSpringorg

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 11: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

For researchers

bull Report-back creates opportunities to discover

unknown exposure sources

bull Builds trust supports recruitment and

retention

bull By empowering people with knowledge hellip

contributes to public health impact of

research

Ohayon et al 2017 Env Research

SilentSpringorg

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 12: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Brainstorming about action

bull ldquoI appreciate learning about my chemical exposure so I can make improvementsrdquo

bull ldquoI had no idea that house dust had environmental toxins wowI should really dust more oftenrdquo

bull ldquoIrsquom going to go out and buy my sister who has young children a new ceramic pan to cookrdquo

SilentSpringorg

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 13: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Action

People use their results

bull Personal choices

bull Medical settings

bull Community decisions

Examples Brody 2009 AJPH Emmett 2009 JOEM Adams 2011 JHSB Perovich 2018 AJPH SilentSpringorg

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 14: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Local and national campaigns

SilentSpringorg

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 15: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Joseph Allen J_g_allen

( Follow ) v

Im BPA-Free (and loaded with BPS) Just like your kid s sippy cup OetoxMeActionKit SilentSpringlns 1

bull

bi p~nolf us~

bis prienol S

bull

618 AM - 9 Sep 2017

6 Rf weets 16 Likes 0

0 4 U6 bull 16 El

Tweet your reply

SilentSpringorg

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 16: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Foundation for environmental health literacy

Polluters (refinery ships)

Products hard to avoid (flame retardant)

Products individual choices

(indoor pesticides)

Collective Action Individual Action

Product choices

IPM

Organize

Participate

Vote

Chemicals policies

Consumer campaigns

Vote

Brody et al in Finn and OrsquoFallon eds 2018 Environmental Health Literacy SilentSpringorg

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 17: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Welcome to MyPROTECT Report + View your MyPROTECT study results

+ Learn about the chemicals in the study

+ Reduce chemicals in your home and community

Get started

-

MyPROTECT Report

Choose your avatar

The face will represent you in the

report

SilentSpringorg

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 18: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Detox Me free smartphone

app walks you through simple

research-based tips on how

to reduce harmful

chemicals

bull Track your progress and get

reminders

bull Scan product barcodes to find

relevant tips

bull Share tips with friends family

wwwdetoxmeapporg

Also in Spanish

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 19: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

NASEM Take-Aways

NASEM 2018

bull Potential harms are overstated and

benefits under-appreciated

bull Benefits to participants extend beyond clinic and beyond actionable results

bull For researchers a vital key to the trust

that underlies participation

bull Calls on NIH and academic institutions to

create new supports

bull QAQC standards outside of CLIA

communications expertise $$

bull Encourages researchers and IRBs to routinely report-back starting now

SilentSpringorg

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program

Page 20: Right-to-Know, Right-to-Act · Women Firefighters Biomonitoring Collaborative, PROTECT . Supported by NIEHS, NSF, CA Breast Cancer Research Program. Title: Right-to-Know, Right-to-Act

Personal Exposure Report-Back Ethics (PERE) Study

Silent Spring Institute - Julia Brody Ruthann Rudel Erik Haugsjaa Katherine Boronow Jennifer Ohayon

Northeastern SSEHRI - Phil Brown

UC Berkeley - Rachel Morello-Frosch

Harvard Environmental Law amp Policy Clinic - Wendy Jacobs Shaun Goho

Harvard Human Computer Interaction Group - Krzysztof Gajos Ken Arnold

Participating studies including CDC Green Housing Study Child Health and Development Studies BCERP ELLA Study Women Firefighters Biomonitoring Collaborative PROTECT

Supported by NIEHS NSF CA Breast Cancer Research Program