 Information
for People Interested in Participating in Research Projects as
Subjects
by Jan Wohlberg and the AdvocateWeb
Advisory Council
From time to time, AdvocateWeb is approached by researchers
interested in studying aspects of sexual and emotional abuse by
clergy, health care professionals, and others in positions of power
and authority. As an integral part of their work, they seek the
input of people who have had direct experience with this kind of
abuse. In research jargon, people who participate in research
projects are generally referred to as "human subjects."
Researchers may include: academics, including students, working
in college or university settings; journalists and other writers;
people working for research institutions such as the Centers for
Disease Control or Public Citizen's Health Research Group; and
activists affiliated with organizations interested in supporting a
particular agenda, such as Sesame or TELL
ADVOCATEWEB NEITHER ENDORSES NOR SUPPORTS ANY RESEARCH PROJECT,
NOR DOES IT TAKE A POSITION ON THE QUALITY OR VALIDITY OF ANY
RESEARCH OR ITS OUTCOMES. IN ADDITION, ADVOCATEWEB CANNOT GUARANTEE
THE LEGITIMACY OF ANY RESEARCHER OR IN ANY WAY CONTROL THE FINDINGS
OF A RESEARCH PROJECT OR HOW THOSE FINDINGS WILL BE USED.
ADVOCATEWEB CANNOT AND DOES NOT INSURE THE CONFIDENTIALITY OR
SAFETY OF THOSE WHO ELECT TO PARTICIPATE IN A PARTICULAR RESEARCH
PROJECT.
That having been said, AdvocateWeb believes that good research is
critical to understanding the phenomena and aftermath of
exploitation in power-imbalanced situations, to finding ways to
prevent such exploitation, and to finding ways to support and treat
victims. To this end, AdvocateWeb posts requests from researchers
who are looking for subjects willing to participate in research
studies as a way to encourage raising the level of the dialogue
about sexual and emotional exploitation.
Before you agree to become a research subject, please read the
following often asked questions and answers:
Why should I participate in a research study?
Your participation helps others to understand, in a meaningful
way, what it is like to have been exploited by someone in a position
of power and authority. When we tell our stories, others decide to
believe us or not based on their feelings about us as individuals.
However, when researchers tell our story as one of many stories that
form a trend, we gain a higher level of validation.
There are more personal reasons for participating in a research
study as well. Gary Schoener, Executive Director of the Walk-In
Counseling Center in Minneapolis, notes: "Victims, and others
with particular life experiences, often find it helpful, and even
therapeutic to be interviewed or fill out questionnaires. Many say
that it was rewarding and helped their recovery." Jan Wohlberg,
Founding Member of TELL, writes: "Participating in research
studies gives us one more way to bear witness to what has taken
place and have our voices heard."
How do I know a research project is legitimate?
Most people who take the time to put together a good research
project have at least some degree of legitimacy. If a researcher is
affiliated with a college or university, research projects may be
subjected to review by a human subjects committee or institutional
review board. It is the responsibility of such regulating committees
to read research proposals and determine whether they are
appropriate, well-constructed, and use human subjects in ways that
are not harmful. These committees or boards rarely regulate the work
of students at the undergraduate or master's degree levels, but
almost always regulate the research of doctoral students and
faculty.
S. Michael Plaut, Ph.D., Associate Professor of Psychiatry at the
University of Maryland School of Medicine, writes: "There is a
big difference between an off-the-cuff study done by an individual
who has a strong bias they are trying to support, with a resulting
exploitative effect on people who may already be vulnerable to
apparent authorities, and a trained researcher whose proposal has
undergone appropriate peer review by a granting agency or
institutional review board."
Most other researchers are not regulated, but this does not mean
that they are not legitimate. A writer who is gathering background
information for a book or article may be careful and very thorough.
Deborah Lott, author of "In Session: The Bond Between Women and
Their Therapists," writes: "My book was based on research
with women in therapy; I am not an academic, and I had to rely on
the kindness of strangers and networking to find subjects. I
advertised in publications, contacted TELL, wrote to therapy
training programs, etc. I believe absolutely in the importance of
scientific standards, but I also think there's a place for
journalism and more grass roots work."
If you are interested in participating in a study, it is up to
you to check on the credentials of the researcher before becoming
involved. In addition, if at any point during your participation you
become uncomfortable with the process, the project, or your
treatment, you are free to stop your participation despite anything
the researcher may tell you to the contrary.
Is some research better than others?
Most definitely. There is good research and bad research and many
shades in between. Unfortunately there is no easy way to explain
what constitutes good research versus bad research, as the
differences are vast and complex. Most people can't easily judge the
legitimacy or validity of a research project or of the researchers.
However, understanding the research process may be of some help.
Virtually all research starts with an idea, in research jargon, a
"thesis." Researchers next develop a plan for eliciting
the information necessary to support or refute their thesis.
Generally this takes the form of a survey, questionnaire, or
interview. In research jargon, these are called
"instruments." In some research only one instrument may be
used: Some research may use two or more.
Following the application of the instrument(s), researchers must
then interpret what they have been told. Then they report their
findings.
At each of these steps, i.e., formulating a thesis, developing
instruments, using instruments, interpreting findings, and reporting
findings, many mistakes may be made. Sometimes mistakes are made
because a researcher has not completely thought the research through
or is uninformed about appropriate process: sometimes mistakes are
made because a researcher has been unable to separate his/her biases
from the actual findings. There are even times when researchers,
eager to gather information, lose sight of the humanness of their
subjects and become inappropriate or abusive.
Before you agree to participate in a research project, be sure
you know what it will involve. If you have questions, ask them, and
be sure you are clear about the rules and process. Make clear to the
researcher that you reserve the right to stop your participation at
any time and for any reason, and write a note to this effect on any
release form you may be asked to sign.
If you elect to be a research subject but find yourself
uncomfortable with the process at any time, you have NO obligation
to the researcher to remain in the study. This is true even if you
are being paid for your participation. You have the right to refuse
to answer questions and even to walk out of interviews should they
become problematic for you.
Will the researcher know my name or breach my confidentiality?
The researcher will know your name and have basic information
about you such as your age, gender, address, telephone number, and
so forth. In college or university settings, most researchers are
required to give you a code name or number as a way of maintaining
confidentiality. If the research is in the form of a survey, your
responses may be given anonymously. If the research involves
interviews or observations of behavior, it is up to you to decide
what you want to say and whether video or audiotaping are
acceptable. Before you agree to be a research subject, ask what is
involved, how tapes and notes will be used, and decide whether you
are comfortable with the answers you get.
You will also be asked to sign a release form that will allow the
researcher to use the information s/he gets from you. If that form
does not clearly set out how your name and other identifying
characteristics will be used, add your own statement before signing.
Ask the researcher to sign it as well. Keep a copy of the release.
When the researcher is not an academic, you will have less
control and fewer assurances available with regard to
confidentiality. More than one journalist, for example, has agreed
to keep a person's name confidential but has then included so much
detail about the person as to make them easily recognizable to
family and friends.
If the research is done over the internet, confidentiality can
never be guaranteed.
How much time will it take to be a research subject?
This will differ from project to project. We know of some surveys
that have taken up to eight or nine hours to complete. Others have
taken as little as 20 to 30 minutes. Qualitative research that
involves interviews generally takes longer. Talk to the researcher
about this prior to agreeing to be a subject.
If I have a civil suit or licensing board complaint going on,
can I still be a research subject?
Check with your lawyer.
Will I be allowed to know the purpose of the research?
Not only are you allowed to know the purpose, it should be clear
from the title of the research and from the brief description posted
on AdvocateWeb. If the purpose of the research is not clear, ask the
researcher for clarification. If you are still not clear, you may
elect not to participate.
Knowing the purpose of the research does not necessarily mean you
will like or agree with the outcomes. For example, you might hope
that a particular research project will show that people are harmed
greatly by being exploited; The study might conclude that damage is
minimal. This could be the result of the way the research is
conducted, a skewing of the subjects studied, a bias on the part of
the researcher, or a legitimate conclusion based on solid research.
Will I get to see what the researcher says about me before the
study is published?
You'll have to negotiate this with the researcher. Be aware,
however, that despite the good intentions of a researcher, this
often does not happen.
If the researcher works for a major newspaper or other
publication for which the results of the study are destined, you
might want to ask about the publication's policy on fact checking.
If an article is published in which you are misquoted or facts are
wrong, you have the right to request a retraction or correction.
Who will see the research results?
Some research never gets published or otherwise disseminated.
This is especially true of research done by undergraduate or
master's level students doing the research as coursework.
Research done at higher levels of academia, such as a doctoral
thesis, may be disseminated to other academics in audience-limited
journals. Research undertaken by journalists and other writers has
the greatest chance of reaching a wide audience.
What's the best way for me to contact a researcher?
Most researchers will include information on how they wish to be
contacted as part of their posting. It is important to learn all you
can about the legitimacy of a researcher prior to contacting a
researcher.
Before you make contact, consider how you feel about anonymity
and confidentiality. Most legitimate researchers, but by no means
all, are respectful of confidentiality concerns and are grateful for
a subject's willingness to participate in research in such a
sensitive area.
Be aware that anonymity and confidentiality are given up when you
contact a researcher over the Internet. Kevin Gourley, AdvocateWeb's
President notes, "If I know someone's email address, I can
search the Internet to find what other things they may have said on
the web or in newsgroups." (Similarly, you can search the
Internet for information about the researcher.)
Contacts from your home or work telephone or by post almost
always allow you to be traced by name and address.
If you are actively involved in a board complaint or legal case,
check with your lawyer before making any contact."
So, with all of these possible problems, tell me again why I
would want to be a research subject.
After reading all of this, you may not want to be a research
subject, and no one could blame you. However, your willingness to
share your thoughts about your experiences may lead to a better
understanding of why exploitation happens, how to handle the
problems created by exploitation, and perhaps even how to minimize
it's occurrence.
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