I spoke with Margaret Faedo from the University of Sydney's ethics board.
>> Research ethics at the university deals with any research
project that involves people, their data, or tissue.
We're governed by the Australian national statement.
And the Australian national statement has four key principles, justice,
respect, beneficence, and research merit.
We see a wide variety of projects involving social media.
Some of them are social media researchers who have vast expertise
working in this area and have their own code of practice that they follow.
But others are from other disciplines and will be using social media as a tool.
What you have to remember is that ethics committees aren't made up of
experts in your field.
So often they won't understand all of the types of
social media that you're presenting.
So often the problems that are encountered is that the unsaid things that
are in an ethics project, that when you're speaking to your colleagues, you would
probably not need to mention, you need to be very clear with ethics committees.
And they will often come back to you with further questions simply because they
don't understand what's being done.
One of the dilemmas when you're looking at a project with social media is that
public versus private, and how do you negotiate that.
When person is posting, yes, it is very public, but it is there an expectation
there that some researcher's going to mine their data and take it away with them?
[LAUGH] So the committee will obviously be weighing out the benefits of that research
against the risks that this person is not aware of their data being taken.
Sometimes, the committee will be asking you to post reminders to those people
to say hey, we're doing this project.
Just be aware, so that people can then have a choice to either take part or
not take part.
But it really depends on the design of your study.
The types of things that the committee would see as unethical or
perhaps risks associated with the research would be around privacy as a first point.
And often they don't understand exactly how the privacy is going to be protected
of the individual or even that whole notion of how it works in social media.
The second thing that I've noticed is committees picking up on
the creation of communities and managing that creation of the community.
You've built an expectation of these people who've now join this community.
And all of a sudden, your project's going to end.
What's going to happen to all these people?
They're concerned about the welfare of those participants.
So when it comes to private communities, it really depends on
the nature of that community as to what the ethics committee would look at.
So for example, if it was a particular disease, have these
people communicated to their families that they have this disease?
Would you be divulging some of their privacy by having them join
a Facebook site that others could see?
What protections would you need to put into that community so
that people can feel calm and relaxed in joining that community?
And know that nobody's going to, that shouldn't know won't know.
When you're looking at recruiting through social media, so getting your participants
through social media, there's a couple of things you need to be aware of.
One is how coercive that is, so are people joining
your project out of some sort of sense of duty or obligation?
And this is especially true if you're recruiting your friends or family,
or if you're a lecturer, your students, how coercive is that?
And do they really have the freedom to say, no,
I don't want to be a part of your study?
Are they aware that they're being recruited?
So, especially on something like Facebook, for
example, the posts don't stay present all the time.
Do you need to be reminding them over and
over again that they're actually part of that study?
And are you joining a group
as a member and then using that as a way to get to participants?
Need to be quite honest as to why you're joining that group and be quite up front
about the fact that you're a researcher, and you're joining it as a researcher.
And give them the opportunity to say, yes, we're happy for
you to come into this group or not.
So when you're talking about participant information statements,
you need to make sure that it's fit for purpose.
So there's some examples where it would be
totally inappropriate to get written consent from somebody.
Maybe they're not literate, or maybe they're meant to be anonymous.
[LAUGH] So then in those circumstances you wouldn't be using a participant
information statement.
Likewise with social media, you need to make sure that your statement is fit for
purpose.
What the committee will be most interested in is that people are giving fully
informed consent, and that's what you need to address.
It doesn't need to be in the same shape and form as your traditional, say,
clinical trial participant information statement.
But it needs to relay enough information so that people understand
what's expected of them and what are the repercussions of joining that study.
I would say most committee members wouldn't be aware of that theory
of the distributed responsiblity when it comes to social media research.
And although they would see that most people should know that when they're
posting they have a responsibility for what they are posting and
understanding where that may be used,
Dr Jonathon HutchinsonLecturer in Online Communication and Media
