Vous êtes sur la page 1sur 25

121 Heatley Avenue

Vancouver, BC V6A 3E9

Project
Inclusion
Ethics Framework

Prepared February 2017


Project Inclusion: Ethics Framework

Pivot Legal Society.......................................................................................................... 3


Project Inclusion .............................................................................................................. 3
Core Constituents ........................................................................................................... 3
Guiding Principles ........................................................................................................... 4
Hypotheses ..................................................................................................................... 5
Goals and Outputs .......................................................................................................... 6
Methods .......................................................................................................................... 7
Confidentiality, data gathering and storage ..................................................................... 8
Survey data ................................................................................................................. 9
Focus groups ............................................................................................................... 9
Individual Interviews .................................................................................................. 10
Risks and Benefits ........................................................................................................ 11
Service Providers....................................................................................................... 11
Core Constituent Participants .................................................................................... 11
Consent and Remuneration .......................................................................................... 12
Research with First Nations, Inuit, and Mtis peoples ................................................... 13
Funding and Fundraising............................................................................................... 14
Communications and Photographs ............................................................................... 14
Future use of data ......................................................................................................... 15
Contact Information ....................................................................................................... 16

2
Pivot Legal Society
Pivot is a human rights organization founded and located in Vancouvers Downtown
Eastside. Pivot works on behalf of marginalized communities to create a just, fair and
equal society through litigation, law reform, research and legal education.

Project Inclusion
A complex web of federal, provincial and municipal laws, regulations and policies affect
the lives and the health of people who are marginalized within our province. This
category includes people who experience homelessness, people who experience
problematic substance use, and/or people who engage in sex work. These populations
are also at elevated risk of contracting HIV or Hepatitis C (HCV), and of
overdose. Additionally, Indigenous peoples throughout BC are over represented
amongst these groups and may have unique experiences as a result of historical and
ongoing colonization and racism, including residential schools, over-institutionalization,
and involvement with the child welfare system.

Pivot is reaching out across British Columbia to assess how local laws, policies and
practices affect marginalized groups access to health care services, and their risk
of contracting HIV and/or HCV, as well as their risk of overdose. Pivot will examine
laws, enforcement tactics, judicial conditions, government consultation processes, and
institutional release practices.

Core Constituents
Pivots core constituents include people who are or have been homeless, people who
use drugs, people who have traded sex for money or other benefit or who identify as
sex workers, and people who are over-policed as a result of their social standing, race,
ethnicity, disability, and/or poverty.

3
All of Pivots core constituents have experienced marginalization as a result of poverty
and thus experience the legal system in ways that are fundamentally different than other
community members. Pivot will engage with people who experience legal barriers to
health care, people at elevated risk of contracting HIV and HCV, and people who are at
risk of overdose.

We will examine whether these constituencies are forced to engage in higher risk
behaviours as a result of local laws, law enforcement, judicial conditions, government
consultation processes, and institutional release practices. We will also engage with
people whose lives, health and safety are put at risk more generally as a result of their
experiences with legal systems.

Pivot recognizes that the interests and needs of people who are or have been
homeless, people who use drugs, people who have traded sex for money or other
benefit or who identify as sex workers, and people who are over-policed as a result of
their social standing, race, ethnicity, disability and/or poverty are not homogenous. In
particular Pivot will endeavor to hear from people who have unique experiences of
marginalization and who may be less well represented amongst existing advocacy
movements. Included in this are Indigenous peoples, women, people with disabilities,
racialized people, young adults aging out of foster care, and members of the LGBTQ2
community.

Guiding Principles
1. People with lived experience are the experts in their own lives and are in the best
position to explain how legal systems affect them. Law and policy must be
developed in consultation with, and to meet the needs of, the people who will be
most directly affected.
2. Equality in our society requires the inclusion and elevation of people currently
pushed farthest to the margins by virtue of systemic inequities, poverty, stigma and
discrimination.
3. Indigenous peoples are living the continued legacy of colonization, racism, and
residential schools. They live with the ongoing reality of child apprehension, foster
care, over-incarceration and the impacts of systemic racism and prejudice.
Indigenous people are therefore over represented amongst Pivots core constituents.

4
We will endeavor to engage with Indigenous participants and communities in a
manner that recognizes and respects their unique experiences, perspectives, needs
and aspirations.
4. Pivot believes in the power of storytelling and personal agency in determining how
stories get told. We work to provide safe spaces in which people can be heard and
express themselves as a means of informing our work, building community capacity
and personal empowerment.
5. Since its formation in 2001, Pivots campaigns (sex workers rights, police
accountability, housing justice, drug policy, child welfare, and womens safety) have
been directly informed by people with direct lived experience. Through this project
Pivot will endeavor to deepen our understanding of the issues faced by our core
constituents across the province and incorporate those views into our work.
6. People experience legal systems differently based on a number of personal and
demographic factors. Pivot will endeavor to reach people whose experiences may
be unique and who may be less well represented amongst existing advocacy
movements. Included in this are Indigenous peoples, women, people with
disabilities, racialized people, young adults aging out of foster care, and members of
the LGBTQ2 community.
7. Pivot believes that the systemic oppression experienced by our core constituents
requires systemic responses. We are not a direct services clinic and cannot
generally take on individual legal cases. We will endeavor to identify targets for
systemic advocacy, litigation, law reform and education, with the goal of creating
systemic change.
8. Our core constituents often rely on income assistance, disability income or other
subsistence level income generation. Processes that do not recognize the value of
our constituents time and remunerate them are inaccessible and may put people at
risk by limiting their ability to access money and food. Pivot therefore stipends
participants for their time.

Hypotheses
This project is exploratory in nature. The findings will be based on data collected from
members of Pivots core constituencies and service providers who work with those
groups. That data will be analyzed in relation to local laws and policies, law enforcement
practices, government processes, and public health data. Through this analysis Pivot

5
will identify potential, legal causes of action, and opportunities for legal reform and
education.

Pivot, through its in-community experience and review of the relevant literature, has
identified several preliminary areas for investigation. These include:

1. Public space bylaws including prohibitions and strict limits on sleeping,


sheltering, lying down, sitting, loitering, panhandling, vending, entering parks,
and carrying harm reduction supplies.
2. Zoning laws that prohibit or limit the provision of services to our constituents.
3. Public processes that may disproportionately burden service providers or
encourage governmental decision-making that is based in prejudice rather than
evidence.
4. Law enforcement practices that my increase risk behaviours including street
checks, carding, proactive displacement, increased police presence in areas
frequented by marginalized people, confiscation of belongings (shelter,
medication, harm reduction equipment).
5. Judicial or police imposed behavioral conditions such as red zones, sobriety
requirements or prohibitions on carrying drug paraphernalia.
6. Institutional release practices, in particular conditions of release from
incarceration that may put people at additional risk of overdose.

Methods will be sufficiently flexible to allow Pivot to identify issues beyond this list and
analysis will rely on the data gathered from study participants.

Goals and Outputs


Based on input from directly affected people, Pivot will:

identify key areas for law and policy reform and advocacy;
report our findings in a publicly available report, and possibly academic
publications;
develop resources for community members, service providers and advocates;
engage in public legal education and community dialogue such as in-community
events, social and traditional media engagement, and academic lectures; and

6
engage directly with governments to pursue identified law and policy reform
goals.

The data gathered will also inform Pivots future investigations into possible rights
violations and potential litigation. Any litigation undertaken by Pivot is separate from
Project Inclusion and no participant is obligated to engage in any aspect of future
litigation.

Methods
Pivot will review the relevant literature and laws, and will engage in preliminary expert
consultations to assist in determining key issues, core constituents and methods for
data collection. These preliminary consultations will not be recorded, attributed or form
part of any final report. They will be used as background information.

Pivot will then engage service providers in online surveys, and in some cases follow-up
interviews, and will engage directly with marginalized people using focus groups and
individual interviews. Where possible and relevant, Pivot will also attend government
and community consultations.

Based on a review of local laws, media, health data, literature, and the responses of
service providers, Pivot will identify one to three municipalities in each health authority
where in-community data gathering will take place.

Where there are existing groups of core constituents who meet regularly, Pivot may
host focus groups with those individuals. Where possible Pivot will host 1-2 focus
groups in each health authority. Additionally, and where focus groups are not a safe or
viable option, Pivot will engage in individual interviews in each location. We will
endeavor to speak with 8-10 people per location, depending on the size of the
community and availability of potential participants.

Interviewers will be given the opportunity to journal after each focus group or interview,
or at least at the end of each day of data collection in order to note non-verbal input
gathered and to process emotions arising from their work. These journal entries shall
not contain any identifying information about a participant and will be kept confidential.

7
Inclusion criteria will be open to anyone identifying as being affected by legal systems in
a way that puts their lives, health or safety at risk particularly as it relates to the risk of
HIV, HCV and overdose. Our focus will be on individuals who fall within our core
constituency.

Participants will be recruited primarily through local service providers. We will also rely
on snowball recruitment where individuals are willing and able to refer peers to the
study.

Participants may choose to provide their name in order to allow Pivot to contact them in
the future. This information will be kept confidential and separate from study data. No
participant will be required to provide their name and all participants will be given a
pseudonym in all Project Inclusion publications. Any participant who wishes to
participate in Project Inclusion communications or advocacy and to be identified by
name, will be required to provide explicit consent in addition to the informed consent to
become a participant.

Pivot will guard against the possibility of interviewing the same participant twice by
working in small research teams who are able to identify participants visually and by
working with service providers to make connections with potential participants.

Pivot will engage an expert consultant on issues relating to sex work. Also, a research
assistant with expertise in working with Indigenous peoples and communities, will work
with volunteers in various locations to assist in data collection, and will consult with
relevant people and organizations on best practices in community engagement.

Confidentiality, data gathering and storage


Pivot will keep the identities of participants confidential. All participants whose views will
be included in any reports, publications, academic articles, advocacy or
communications will be assigned a pseudonym unless explicit consent is given to be
identified (see below Communications and Photographs). Participants may choose
their preferred pseudonym, otherwise Pivot will assign them one. Information that
discloses a participants identity will not be released without consent unless required by

8
law. Copies of Project Inclusion Focus Group and Individual Interview Informed Consent
forms are attached as Appendix A to this document. Service providers completing the
survey portion of the project will be provided with an informational cover letter and will
be required to provide their explicit informed consent to participate through the online
survey tool. A copy of the service provider informational cover letter is attached as
Appendix B to this document.

Any participant who wishes to participate in Project Inclusion communications or


advocacy and to be identified by name, will be required to provide explicit consent in
addition to the Project Inclusion informed consent.

Access to raw data collected for this project will be restricted to staff, contractors and
volunteers who require access for project purposes and who are subject to a
confidentiality agreement not to disclose information gathered in the course of their work
with Pivot.

Survey data

Service providers may choose to provide their name with or without contact information
or may fill out the survey without providing identifying information. Names and contact
information will not be published, and will only be used to contact these participants for
follow up with their explicit consent. All survey results will be given a code that will
ensure that only the investigators know the participants identity.

Online survey data will be gathered through Survey Monkey, click here to read Survey
Monkeys Privacy Policy. Once survey data collection is complete, responses will be
downloaded and stored on a secured server and secured computer within the law office
of the Pivot Legal Society.

Focus groups

Focus groups will be audio recorded and notes may be taken contemporaneously. No
participant will be required to provide their full or legal name. Focus group data will be
coded identifying participants only by number or pseudonym, and participants will only
be identified by pseudonym in any reports, publications, academic articles, advocacy or
communications.

9
All participants will be informed that their identities and information cannot be kept
confidential from other participants in the focus group. Even participants identifying
themselves by number or pseudonym may be recognizable to other members of the
group. Pivot is not able to protect against that eventuality. All focus group participants
will sign a confidentiality form agreeing to keep confidential any information gathered
during the focus group about anyone in attendance at the focus group.

Focus groups will be audio recorded onto password protected laptop computers and
temporarily stored on a password protect external hard drive. Once data collection is
completed, focus group data will be stored on a secured server and secured computer
within the law office of the Pivot Legal Society.

Individual Interviews

Individual interviews will be audio or possibly video recorded depending on resources


and the expressed desire of the participant.

Interview participants may choose to provide their name, with or without contact
information, or may provide a pseudonym or initials only. Names and contact
information will not be published, and will only be used to contact these participants for
follow up with their explicit consent. A name, pseudonym or initials are required in order
to locate consent forms and interview data should the participant request access to that
information or revoke their consent to participate.

Each interview will be provided a number that correlates to a key code where any
identifying information will be kept separate from interview responses. The key code will
be stored on Pivots secured server and participants will be identified only by
pseudonym in any reports, publications, academic articles, advocacy or
communications.

Interviews will be recorded onto password protected laptop computers and temporarily
stored on a password protect external hard drive. Once data collection is completed,
interview data will be stored on a secured server and secured computer within the law
office of the Pivot Legal Society.

10
Risks and Benefits
Service Providers

Participation will remain confidential, unless a participant chooses otherwise. For


service providers choosing to be identified, participants are asked to consider the
possibility that their employment or personal relationships may be negatively affected if
they are expressing views that may be at odds with colleagues, employers,
stakeholders, funders or prominent community members. By participating in this survey,
service providers will contribute to an improved understanding of how laws and
enforcement practices across BC affect their clients and to advocacy efforts to improve
their lives.

Core Constituent Participants

During focus groups and individual interviews, participants will be engaged in


conversations about sensitive issues including drug use, sex work, police encounters,
HIV or HCV status, and personal history with the foster care system, incarceration, and
other sensitive topics. This may be upsetting for some participants. Pivot will work with
local service providers to provide support after interviews for those requesting it.

Pivot recognizes that participants may face heightened risk if they are identified as a
person who uses drugs, engages in sex work or shelters in public spaces. These risks
include increased stigma from peers, service providers and the public, risk of retribution
from members of the public, or increased police surveillance. These risks may be
especially pronounced in smaller communities where fewer services are available and
harm reduction is less widespread as a basis for care.

Participants will be encouraged to consider these risks and will be informed of their right
to confidentially. They will also be informed of steps that Pivot will take to protect them.
This includes the use of pseudonyms in reports, publications, academic articles,
advocacy and communications, and, where necessary, generalizing results where
specifying a location or incident details may result in identification of the participant.

11
All participants will contribute to a better understanding of issues faced by marginalized
people across the province, an improved understanding of how laws and enforcement
practices across BC affect them, and to advocacy efforts to improve their lives.

Participants choosing to be identified may benefit from being identified as a leader and
advocate within their community. This possible benefit should be carefully weighed
against the risks outlined above.

Consent and Remuneration


Participation in this study is entirely voluntary and anyone may refuse to participate or
decline to answer any or all questions without incurring costs or personal
consequences.

Survey respondents may decline to respond to any question, may choose not to
complete the survey and may end the survey at any time. Once the survey has been
submitted, however, a participant will not be able to revoke their consent.

Focus group participants may leave the focus group at any time, may decline to answer
any question and may choose not to participate in any portion of the focus group
conversation. Any information provided during the focus group, however, cannot be
later removed from the data pool due to the inability to redact only one participants data
from a focus group context. Focus group participants will not be able to revoke their
consent to participate after the completion of the focus group.

Individual interview participants may choose not to participate, may decline to answer
any question and may leave the interview at any time. If an individual interview
participant wishes to revoke their consent after the completion of the interview they
must advise Pivot as soon as is practicable and must be able to provide identifying
information that allows Pivot to locate their consent form and interview. Once a report,
publication, academic article, advocacy or communications document is near final form
for publication or has been published, a participant will no longer be able to revoke their
consent to participate.

12
No remuneration will be offered to service providers in connection with the survey. An
honorarium may be offered to organizations where focus groups and interviews are
facilitated, depending on resources.

Stipends of <@>will be provided to focus group participants and stipends of <@> will be
provided to individual interview participants. Additionally, participants may be offered a
gift card depending on resources. Food and drink will be provided for focus groups and
private interviews.

Research with First Nations, Inuit, and Mtis peoples


First Nations, Inuit and Mtis peoples (which we will collectively refer to as Indigenous
peoples) have unique experiences with police, legal systems, service providers,
researchers, government, and a unique relationship to Canadian society more broadly.
Indigenous people are over represented amongst Pivots core constituents as a result of
Canadas continued legacy of colonization, racism, and residential schools. They live
with the ongoing reality of child apprehension, foster care, over-incarceration and the
impacts of systemic racism and prejudice. Pivot recognizes that decolonization and
substantive equality demand thoughtful and dedicated engagement with Indigenous
peoples.

Pivot further recognizes that data gathering and storytelling must be inclusive and
accessible to Indigenous people and that our analysis and project outcomes must
reflect the needs and aspirations of Indigenous communities. Pivot believes in the
empowerment potential of community and peer-based advocacy and will endeavor to
use this project to provide resources to Indigenous communities and core constituents
that are responsive to their expressed interests and concerns.

Pivot recognizes that we are not a grassroots community organization, nor are we an
Indigenous-led organization. Pivot recognizes that it is not our role to tell Indigenous
communities and people what legal issues should be important to them. Rather it is our
role to listen carefully, to determine where we may be able to helpfully engage and to
ask those communities if they would like us to work with them towards their expressed
goals.

13
Pivot will work with Indigenous organizations, an Indigenous research assistant and a
mentor on Indigenous engagement as the project unfolds in order to engage with
Indigenous communities and participants in a respectful and principled way.

Pivot recognizes that in some research studies it may be appropriate to inform local
Indigenous governments prior to commencing data collection and to work with
Indigenous governments throughout the process. Because of the sensitivity of the
issues under examination, the ongoing marginalization of many of the potential
participants and the need to protect the confidentiality of participants, Pivot will only
engage with local Indigenous governments where it is identified as being the safest,
best way to protect participants.

Pivot will work with Indigenous organizations, our mentor on Indigenous engagement
and others to identify when and where it will be appropriate to engage with local
Indigenous governments either during data collection or once Pivot has analyzed the
data and formulated our findings.

Funding and Fundraising


Pivot has been contracted by the Provincial Health Services Authority to conduct
independent community-based research to identify legal barriers that limit access to
existing health services, increase risk of contracting HIV, HCV or of overdosing, and
limit the ability to provide relevant services. Additional funding has been provided
through the Mitacs Accelerate program, Pivot Foundation, Open Society Foundations,
MAC AIDS Foundation and individual donors to Pivot Legal Society.

Pivot is an organization of limited means. Pivot will communicate the goals, progress
and outcomes of this project to our funders, including our donors, supporters and the
public, for the purpose of raising funds to further Pivots in-community advocacy work.

Communications and Photographs


Participants may be asked if they would like to engage in public communications and/or
advocacy related to this project. These communications will be separate from the

14
survey, focus groups or interviews and would include storytelling related to issues they
have faced, their experience of participation in the project, and their aspirations for
social change.

These communications may include being interviewed for a blog post (either under a
pseudonym or under an individuals name), participation in social media content (either
under a pseudonym or under an individuals name), participation in traditional media
(this may require that a participant be identified by name), participation in advocacy and
education with the public and government stakeholders, and/or participation in
fundraising communications to support Pivots ongoing project work. Participants may
also consent to have their picture taken for any of these outlined purposes.

Consent to participate in communications or to be photographed will be gathered


separate from research consent.

Future use of data


Data gathered will form the basis of law and policy recommendations, will be published
in a report, policy briefings, Pivot communications, and possibly academic literature, will
inform government advocacy initiatives, will be used as the basis for community
education resources, and will inform Pivots public campaigns including litigation
planning.

This data will also inform Pivots strategic planning, including planning for campaign
projects, staffing and possible geographic expansion.

Any future use of the data collected will be subject to the same confidentiality
requirements outlined above and will be used only for the business purposes outlined in
this document

15
Contact Information
Contact for questions, concerns and more information
Please contact DJ Larkin, Pivot Legal Society, at 604-229-9631 or by email at
dj@pivotlegal.org.

Contact for complaints


Please contact Annelies Becu, HIV Project Coordinator, Clinical Prevention Services,
BC Centre for Disease Control at 778-877-0311.

16
(Appendix A)

Informed Consent Statement: Individual Interview Participant


Project Inclusion: A human rights approach to HIV, HCV and overdose prevention

Information:

You are invited to participate in an individual interview as part of Pivot Legal Societys research
into local laws and law enforcement that put peoples lives, health, safety and dignity at risk.
Your expert input will help inform Pivots law reform projects, government advocacy, public
education, communications, publications, community legal resources and litigation.

We are looking at how laws, policing practices, and conditions imposed by a court or police
officer may affect you. This may include impacts on how you access services, your risk of
incarceration, your interactions with police, or your engagement in risky behaviours. We will also
ask for your opinion on what changes you would like to see to current laws, policing practices,
and judicial conditions.

Stipends:

This process will take approximately one to two hours to complete. You will receive a stipend
once your interview is complete. This payment is compensation for your time and expertise.

Risks and benefits:

You may be asked about sensitive personal issues including drug and alcohol use, trading sex,
police encounters, HIV or Hepatitis C status, incarceration, or history in foster care. We
understand that this may be upsetting. You can refuse to answer any question or end the
interview at any time. Pivot can help put you in touch with a local service provider for support
after the interview.

Pivot takes your privacy seriously. We understand that you may face discrimination in your
community, police surveillance or other negative consequences if your participation in this
project is disclosed. We will not disclose your identity unless you explicitly consent to being
identified.

By participating, you will help us better understand how laws and enforcement practices affect
you, and will help shape efforts to improve circumstances in your community.

17
Confidentiality:

Your participation in this project is confidential (you will not be identified in anything we write or
produce). We will use a pseudonym to protect your identity and will use the information you
provide, possibly including quotes, without identifying you by name or using any information that
could otherwise identify you.

We require that you provide your name, initials or a pseudonym on this consent form so that we
can find your information if you request it or if you allow us to contact you in the future. We will
store this form confidentially and separate from interview recordings and notes so that your
name is not connected to information and opinions you provide.

You may participate under your chosen pseudonym or without providing any name during the
interview. If you do not choose a pseudonym, one will be chosen for you.

I wish to identify myself by my chosen pseudonym. I understand that I will be identified


by my chosen pseudonym in publications and resources produced by Pivot.
______(Initial here). My pseudonym is_______________________.

If you want to be identified and participate in communications and advocacy we will ask you to
sign a separate communications and photography consent form. You do not need to
participate in communications or advocacy to participate in the study.

Follow up:

Do you want us to contact you if we are advocating on issues that interest you? This includes
informing you of our future work and possibly asking if you want to participate. These
communications are confidential. You do not need allow us to contact you again.

I consent to being contacted by Pivot regarding future advocacy projects. ______(Initial


here). The best way to contact me is:________________________.

Communications, photographs and fundraising:

Throughout the project, Pivot will communicate with our supporters and donors to increase
public support for advocacy and to raise funds to continue this work. We will not share any of
your personal information without your explicit consent.

18
Ethics framework:

Pivot has created an ethics framework for this project that outlines our guiding principles,
methods, data storage, and funding. A copy of this framework is available to you today.

Consent statement:

You can refuse to answer any question or end the interview at any time. You can revoke your
consent before materials are finalized for publication. If you decide that you do not want your
interview used, you should contact Pivot as soon as possible and provide us information that
allows Pivot to locate your consent form and interview.

By signing this form you agree that:

I have reviewed and understand the above information. My participation in this study is
entirely voluntary. I may refuse to participate, decline to answer any or all questions, and
I may end my participation at any time without incurring costs or personal
consequences. Before materials are finalized, I may request that Pivot not use the data
gathered from me for any purpose.

Participant Name/Initials/Pseudonym: ____________________________________

Signature: ________________________Date: _____________________

Witness Name: ______________________________________________________

Signature: ____________________________Date: ____________________

Contact for questions, concerns and more information: DJ Larkin, Pivot Legal Society, at 604-
229-9631 or by email at dj@pivotlegal.org.
Contact for complaints: Annelies Becu, HIV Project Coordinator, Clinical Prevention Services, BC
Centre for Disease Control at 778-877-0311.

19
Informed Consent Statement: Focus Group Participant
Project Inclusion: A human rights approach to HIV, HCV and overdose prevention

Information:

You are invited to participate in a focus group as part of Pivot Legal Societys research into local
laws and law enforcement that put peoples lives, health, safety and dignity at risk. Your expert
input will help inform Pivots law reform projects, government advocacy, public education,
communications, publications, community legal resources and litigation.

We are looking at how laws, policing practices, and conditions imposed by a court or police
officer may affect you. This may include impacts on how you access services, your risk of
incarceration, your interactions with police, or your engagement in risky behaviours. We will also
ask for your opinion on what changes you would like to see to current laws, policing practices,
and judicial conditions.

Stipends:

This process will take approximately one hour to complete. You will receive a stipend once the
focus group is over. This payment is compensation for your time and expertise.

Risks and benefits:

During this focus group, we will discuss how laws and policing affect you. Sensitive issues like
drug/alcohol use, trading sex, police encounters, HIV or Hepatitis C status, incarceration, or
foster care may come up. You can refuse to answer any question or participate in any part of
the conversation. You can leave the focus group at any time. Pivot can help connect you with a
local service provider for support after the focus group.

Pivot takes your privacy seriously. We understand that you may face discrimination in your
community, police surveillance or other negative consequences if your participation in this
project is disclosed. We will not disclose your identity unless you consent.

By participating, you will help us better understand how laws and enforcement practices affect
you, and will help shape efforts to improve circumstances in your community.

20
Confidentiality:

Your participation in this project is confidential (you will not be identified in anything we write or
produce). We will use a pseudonym to protect your identity and will use the information you
provide, possibly including quotes, without identifying you by name or using any information that
could otherwise identify you.

We require that you provide your name, initials or a pseudonym on this consent form. This is so
that we can find your information if you request it in the future. We will store this form
confidentially and separate from focus group data so that your name is not connected to
information and opinions you provide.

Focus groups will be audio recorded and participants will be identified only by number or
pseudonym. Your participation and the information you provide in the group cannot be kept
confidential from other focus group participants. In order to participate in the group you must
agree to keep the information you learn about anyone in attendance confidential.

I agree to keep the identity of other participants and anything I hear during this focus
group confidential and not to disclose this information except with consent of the person
whose information I am disclosing or as required by law. ______(Initial here)

If you want to be identified and participate in communications and advocacy we will ask you to
sign a separate communications and photography consent form. You do not need to
participate in communications or advocacy to participate in this focus group.

Follow up:

Do you want us to contact you if we start advocating on issues that interest you? This includes
informing you of our work and possibly asking if you want to participate. These communications
would be confidential. You do not need allow us to contact you again.

I consent to being contacted by Pivot regarding future advocacy projects. ______(Initial


here). The best way to contact me is:________________________.

Communications and fundraising:

Throughout the project, Pivot will communicate with our supporters and donors to increase
public support for advocacy and to raise funds to continue this work. We will not share any of
your personal information without your explicit consent.

21
Ethics framework:

Pivot has created an ethics framework for this project that outlines our guiding principles,
methods, data storage, and funding. A copy of this framework is available to you today.

Consent statement:

Because focus groups will be audio recorded and have multiple participants, Pivot cannot erase
things that you say during the focus group. You can refuse to answer any question or participate
in any part of the conversation, and you can leave the group at any time.

By signing this form I agree that:

I have reviewed and understand the above information. My participation in this study is
entirely voluntary, I understand that I may refuse to participate, I may decline to answer
any or all questions, and I may end my participation at any time without incurring costs
or personal consequences.

Participant Name/Initials/Pseudonym: ____________________________________

Signature: ________________________Date: _____________________

Witness Name: ______________________________________________________

Signature: _____________________________Date: ____________________

Contact for questions, concerns and more information: DJ Larkin, Pivot Legal Society, at 604-
229-9631 or by email at dj@pivotlegal.org.
Contact for complaints: Annelies Becu, HIV Project Coordinator, Clinical Prevention Services, BC
Centre for Disease Control at 778-877-0311.

22
(Appendix B)

We need you

Please take 15-20 minutes to fill out our survey. Your input will assist us in identifying and
removing legal barriers that put your clients health, lives and safety at risk.

Click here to start the survey!

Weve provided background information about Project Inclusion below.

Pivot Legal Society

Pivot is a human rights organization founded and located in Vancouvers Downtown


Eastside. Pivot works on behalf of marginalized communities to create a just, fair and equal
society through litigation, law reform, research and legal education.

Project Inclusion

A complex web of federal, provincial and municipal laws, regulations and policies affect the
lives and the health of people who are marginalized as a result of homelessness,
problematic substance use, and/or engagement in sex work. Pivot is reaching out across
British Columbia to gather information about local laws, policies and practices that affect
marginalized people. Pivot plans to gather data on the role of legal systems in access to
health services. We will focus on laws, enforcement tactics, judicial conditions, and
institutional release practices that may be linked to risks related to HIV, Hepatitis C (HCV),
and overdose.

Methods

As a first step, we are reaching out to service providers for expert input. After this, we will
engage directly with affected communities through focus groups and individual interviews in
municipalities across BC. Click here <@> for a complete overview of our ethics and
methods framework.

23
Goals

Based on input from directly affected people, Pivot will identify key issues for law and policy
reform and advocacy. Pivot will report our findings in a publicly available report, and
possibly in academic publications. Pivot will develop resources for community members,
service providers and advocates, and law reform documents to engage with government
stakeholders. Pivot will also engage in public legal education and community dialogue,
including community events, social and traditional media, and academic lectures. This
research will also inform Pivots litigation advocacy. Data collected will not form the basis of
any litigation.

Risks and Benefits

Your participation will remain confidential, unless you choose otherwise. You may choose to
communicate your views publicly and be identified by name, but there is no requirement to
do so in order to participate in this survey. Please consider whether identifying yourself
might have negative effects on your employment or personal relationships. By participating
in this study you will contribute to an improved understanding of how laws and enforcement
practices across BC affect your clients and to advocacy efforts to improve their lives.

Confidentiality

You may choose to provide your name with or without contact information, or you may fill
out this survey without providing identifying information. Your survey results will be given a
code that will ensure that only the researcher knows your identity. Contact information may
only be used with your consent and for the purpose of conducting a follow up interview with
you or engaging with your clients.

Online survey data will be gathered through Survey Monkey. Click here to read Survey
Monkeys privacy statement. Once survey data collection is complete, all responses will be
downloaded and stored on a secured server and secured computer within the law office of
the Pivot Legal Society.

Your views will remain confidential in any reports, publications, academic articles, advocacy
or communications. Information that discloses your identity will not be released without your
consent unless required by law.

24
If you wish to be identified in publications or advocacy arising from the project, you will be
asked to sign a separate communications and photography consent.

Consent and Remuneration

Your participation in this study is entirely voluntary and you may refuse to participate and
you may decline to answer any or all survey questions without incurring costs or personal
consequences. No payment or other remuneration will be offered to service providers in
connection with this survey.

Contact for questions, concerns and more information

Please contact DJ Larkin, Pivot Legal Society, at 604-229-9631 or by email at


dj@pivotlegal.org.

Contact for complaints

Please contact Annelies Becu, HIV Project Coordinator, Clinical Prevention Services, BC
Centre for Disease Control at 778-877-0311.

Take the survey now!

Thank you for your time and thoughtful input.

25

Vous aimerez peut-être aussi