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Frequently
Asked Questions (FAQ)
In
speaking to our over 5000 participants and their families, there are questions
that frequently come up about mental illness and what it means to participate in
one of our research programs. Below you will find a selection of these
questions, along with our responses:
- Who are the Ashkenazi Jews?
Ashkenazi Jews are Jewish
individuals whose ancestors came from Eastern Europe, Germany, and France. The
vast majority of Jewish individuals in the United States are of Ashkenazi
descent. Please visit our fact sheet
- Why are you studying the
Ashkenazi Jewish population?
We are studying the Ashkenazi
Jewish population because the population arose from a limited number of
ancestors, and because there has been a long history of marriage within the
faith. This has resulted in a more homogeneous (similar) bloodline than is
found in many other populations. Please visit our fact
sheet for more information.
- Are these disorders more
prevalent in the Jewish population?
At this time there is not
sufficient evidence to indicate a higher risk for schizophrenia and bipolar
disorder in the Jewish community. There are some studies that suggest an
increase in affective disorders, including bipolar disorder, in the Jewish
community. However, these studies have not been adequately substantiated at
this time.
- What would I need to do to
participate in the study?
There are three areas in
which an individual may be asked to participate: 1) Completing a psychiatric
interview 2) Giving a blood sample and 3) Completing a family history
interview. However, the amount a person would be asked to do for the study
depends on their family’s structure and which family members have Bipolar
Disorder or Schizophrenia. We would be glad to discuss this with you
individually to let you know what participation might entail for you and your
family. You can contact us by e-mail at familystudy@jhmi.edu
or by phone at 1-888-289-4095.
- What kinds of questions do
you ask during the psychiatric interview?
The questions that are asked
during the psychiatric interview pertain mainly to an individual’s symptoms
and experiences with mental illness. Questions are also asked about the
individual’s medical history, as well as their current level of functioning.
- Is the interview
confidential?
The interview is kept
confidential. Nothing that you say will be shared with anyone outside of the
interviewer and the evaluation team, unless you specifically request that we
share this information. The only instance in which we would be forced to share
information from an interview is if a person was planning to commit a violent
crime, was planning to commit suicide, or was abusing a child (the law requires us to share this information).
- Will I receive my personal
genetic results?
No, personal genetic results
are not provided as a part of this study.
It is important to understand that a gene discovered in some families with a
particular disorder will most likely not be found in all families with the
same disorder. Also, it is clear that mental illness susceptibility is caused
by more than one gene, and that environmental factors are important as well.
In addition, it is likely that we will find that a proportion of those with
the susceptibility gene(s) will never develop the condition. All together,
this makes it very unlikely that locating a gene will allow clinical genetic
testing to determine susceptibility for mental illness at any time in the near
future.
- Will I receive results from
the whole study?
Yes, you will. Results are
shared through our newsletter which is
mailed out twice a year. In addition, once we locate a risk gene for either
bipolar disorder or schizophrenia, we will send out a special letter to
participants explaining the finding.
- Can I see the results of
the psychiatric interview?
If you want your physician to
get the results of your psychiatric interview, that can be arranged.
Please request results at
the time your interview is scheduled, with your interviewer, or contact us by
e-mail at familystudy@jhmi.edu
or by phone at 1-888-289-4095. From the time you are interviewed, it will take
several months to a year before your evaluation is ready.
- Does this involve new
medications or treatments?
This study does not involve
medications or treatments. You should continue your current medications and
treatments while you participate in the study.
- Does the person with the
disorder/illness have to participate, or can other family members
participate?
The person with the illness
must participate. It is the nature of genetic studies that the individual with
the disorder is the most important person in the family to the research. If
the individual who has been diagnosed will not participate, other family
members will also not be able to participate.
- Why do you want my parents
and siblings to participate, if they are available?
If your parents are living and
willing to participate, and if you have siblings who are also affected who are
willing to participate, we would like to include those individuals in the
study. This is because we use a genetic technique called linkage that
requires family participation.
- Do I have to travel to you
for the interview?
No, we will come to you for the
interview and blood sample.
- Why do you need to take my
blood?
Each of us has a complete set
of our genetic information in almost every cell of our body. Genetic
information consists of our genes, which we inherit from our parents. Genes
are made up of DNA. A simple, reliable way for us to get a copy of your DNA is
through a blood sample. We then use that DNA to try to determine the location
of risk genes.
There will be no direct benefit
to you from participation in the study. Our hope is that, in the future, the
results from our study will lead to the development of more effective
medications. However, we cannot guarantee that this will happen, or that you
will benefit. Many people have a good feeling about participating in important
research that may dramatically increase knowledge about mental illness.
- Will you pay me if I
participate?
Volunteers are provided
compensation for their time. Individuals who complete a psychiatric interview
and blood drawing are given $100 for their participation. Other family members
who are only asked to give a blood sample receive $50.
- How can you protect my
family’s confidentiality?
Our research team has taken
many steps to ensure confidentiality. No information about participation in
the study or results from the interview will be shared without express
permission from the participant. All identifying information (i.e. name,
address, social security number) is removed from blood samples before they
leave our office. Samples are identified only with a code. In addition, our
study has a Certificate of Confidentiality that protects our participants from
third parties, especially from a court subpoena. For more information on
confidentiality click here.
- Can you offer any referrals
for treatment (i.e., psychiatrist, etc.) for my family in my specific
area/city?
There are various organizations
that keep referral lists for psychiatrists, psychologists, and therapists
throughout the country. Links to some of these organizations are listed in our
Internet Links page
- If I want to have children,
can someone tell me the likelihood that my child would have schizophrenia or
bipolar disorder?
If you would like information
on chances to have children with mental illness, you may want to visit a
genetic counselor. Please contact our office and we can assist you in finding
a genetic counselor in your area.
- Is there just one gene
involved in schizophrenia or in bipolar disorder?
No, there are most likely going
to be several genes involved in these disorders. Different research groups may
find different risk genes in their genetic studies. These genes will have
different amounts of impact on risk for mental illness. In addition, it is
possible that different groups of individuals may have different risk genes
(i.e. an Irish person may have different genes that confer risk than one of
Chinese descent.)
Most
scientists agree that, for individuals to develop schizophrenia or bipolar
disorder, they must inherit several risk genes.
- What is the difference
between Bipolar I and Bipolar II?
People with bipolar II
disorder have so-called hypomanic episodes, as opposed to the full-blown
manic episodes experienced by those with bipolar I disorder. Both
hypomanic and manic episodes involve the same symptoms (e.g., elevated mood,
increased activity, decreased need for sleep, grandiosity, racing thoughts,
excessive involvement in pleasurable activities, etc.), but there are several
important differences. The most important difference is severity; that is,
hypomanic episodes themselves do not cause significant distress or greatly
impair one’s work, family, or social life, but manic episodes do disrupt these
things.
- How much time does it take
to participate?
The psychiatric interview
usually takes about 2-3 hours to complete, the blood drawing takes about 10
minutes, and the family history interview takes about 1-2 hours. However, the
family history interview is conducted at a later date, after the psychiatric
interview is completed.
- How many times should I
expect to see the Johns Hopkins researchers?
For our current family studies,
an interviewer typically comes to your home one time to complete the
psychiatric interview and blood drawing. The family history interview is
conducted over the phone.
- Can I let my friends know
about the study too?
Telling your friends about your
involvement in our research study is your decision. If you feel comfortable
sharing information about your study participation, you may certainly tell
your friends about the study. We would be happy to have them participate, if
they meet our study criteria.
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