The Creation and - PowerPoint Presentation

Slide1

The Creation and

Replication

of a Powerless Ethics Committee Model: Prelude to Disaster

Martin

TolichSlide2

Background

Ph.D. (1991) Ethnography

First Academic Job 1992

Ethics review—ethnography as journalism

Moral Career

Qualitative research not understood

Joined University & then Health Ethics Committee

Qualitative research not

understood

People phoned wanting ethics reviewSlide3

Elaborating Qualitative Research Ethics

Tolich

, M and M Fitzgerald (2006) “If Ethics Committees Were Designed For Ethnography”

Journal of Empirical Research on Human Research Ethics

1.2: 71-78

.

Limits of formal ethics review—the fourth question

Martin Tolich (2004) “Internal Confidentiality: When Confidentiality Assurances Fail Relational Informants

Qualitative Sociology

27:

101-106

Limits of confidentiality and unworkable anonymitySlide4

A Critic of Ethics Committees

Sieber

,

J. & M.

Tolich (2013)

Planning Ethically Responsible Research

Sage

Tolich

, M. & Smith, B. (2015)

The

Politicisation

of Ethics review in New

Zealand

Tolich

, Martin (2015)

Qualitative Ethics in Practice

Left Coast

Press

Iphofen, R. & Tolich. M (2017)

Sage Handbook of Qualitative Research EthicsSlide5

Audience Participation

Social

scientists are angry and frustrated; their work is constrained and distorted by

regulators

of ethical practice who do not necessarily understand social science research.

Draconian

, Biomedical

Research

Governance—more focused on protecting the institution

Q1. Would you go to an ethics committee if didn’t have to?Slide6

A Show of hands

Q2: Did

the ethics review board send you a customer service survey asking your opinion

on your last application

Q3 Who here has

no access to an ethics review

board.Slide7

How to create a different ethics committee

http://www.nzethics.com

/

Ethics Review for the disenfranchised

central and local government, for-profit research companies, NGOs, market researchers, and community groups.

Gratis--Funded MSD, Tindall

Indemnity

Exponential Growth--2013

14 Apps

2014

22

2015

51Slide8

Could an ethics committee focus only on Research ethics, not research governance

Marlowe

, J. & Tolich, M.  (2015) Shifting from Research Governance to Research Ethics: A Novel Paradigm for Ethical Review in Community Based Research,

Research

Ethics

Research assistant 1) interviewed and 2) sent open ended questions for the second paper

Tolich, M. & Marlowe. J.  (2016)

Evolving power dynamics in an unconventional, powerless ethics committee

Research EthicsSlide9

A Different Philosophy

Voluntary Submission

Advice more than

approval--free to ignore advice

Encourage researchers with problems to come back

The

further we got into [the project], we realized the survey actually wasn’t meeting the need out there and so we revised the survey and so that meant going back to the ethics committee and informing them...That’s actually where we got most of our help around the questions and how they were framed up. The convener gave quite a bit of really good advice around that and made quite a few changes..Slide10

Why submit when not compelled to?

Legitimacy

:

We wanted to do this right. We needed to know that our project was sound and we needed to know that it was ethically valid I

suppose

Rigour

I

think because you know you're

gonna

go through an independent review committee you do try and make sure you've got set up everything properly rather than trying to wing it, so it does put […] more rigour into how you’re setting everything up. Slide11

Why submit when not compelled to?

I feel like we honoured and valued our research participants more and we were able to demonstrate that because we had gone through that extra process that we didn’t have to go

through….We

did it because we wanted to make sure we were unconsciously or accidentally being exploitative or inappropriate in any way so I kind of felt that going through this ethics process with an independent ethics body

…Slide12

No where else is exploitative

[

A New Zealand based university]

used

access to an ethics review board as a way of gaining control over [our] research. The first phase of my research, I had to hand over all control to a professor at the University. Slide13

Can NZEC retain the relational

focus when the floodgates

open

?

51 applicants give an opportunity

to anonymously document their

experience. 19 Respond

motivations

of seeking voluntary ethical

approval

strengths

and weaknesses

of the review

process

the

impact of the review on their rese

arch

what

value (if any) was added

to the project through the review

process

open

ended

final

comments.Slide14

2016: Why did you seek ethics review?

Foreign University Researchers

50

% wanted to publish

No where else to

go

At the request of the funding body, we were not able to start data collection until approval had been received.

Enter a third PartySlide15

Protecting the researcher

As it was my first job post

uni

work it was also good to ensure I was ‘On the right track” so to speak and to protect my back

”.

I

was forced to put something in the application, which I wasn’t happy with ethically, which was picked up by the committee and in turn had my back. I was really glad the committee picked up on this and I was relieved. It was a nightmare working with one of my bosses and the ethics process sort of acted as a mediator between us.Slide16

Was NZEC different?

The

process was painless. Considerably easier, and, interestingly, more interactive than previous [ethics review committee].

A

strength is the participatory nature of the process, it does not feel punitive. The ability to discuss the feedback is also helpful.

Is now a good time to talk?Slide17

The Future of the Powerless Committee

third party threat

government agencies mandate their contract researchers seek ethics review from NZEC.

NZEC’s point of difference

Relational

Expeditious and cordial

communication

between applicants and the committee remains.

Demand continues

NEAC—Fabric of NZ EthicsSlide18

New Brunswick Declaration

encourages

ethics committees to support a regulatory culture that grants researchers the same level of respect that researchers should offer research participants. Slide19

A New Ethics Committee in 2017

NZEC’s model

point of difference

Relational

Expeditious and cordial

communication

between applicants and the committee remains.

An international ethics committee dedicated to reviewing social science research in disasters.

Why disaster? Stop the flood!

Facilitate Social JusticeSlide20

Kia Ora--Thanks