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Why Study
Ashkenazim?
How Jewish Participants Are Especially
Able to Help Researchers Understand Mental Illness Genetics
Jewish individuals are
in a unique position to assist scientists in the understanding of genetic
disorders. Due to a long history of marriage within the faith, which extends
back thousands of years, the Jewish community has emerged from a limited number
of ancestors and has a similar genetic makeup. This allows researchers to more
easily perform genetic studies and locate disease-causing genes.
The following slides provide a graphic representation of variation. Due to the
history of marriage within the faith, individuals of Jewish descent have less
variety in their genetic makeup. This reduction in variability makes it easier
for us to locate disease-causing genes.
More variety makes it more difficult to pick
out the (red) candy
Less variation makes it simpler to pick out the (green)
candy
This question and answer sheet below
is intended to clear up concerns about genetic studies in the Jewish population.
If you have any questions or concerns, please call the Johns Hopkins
Epidemiology-Genetics Program Family Studies at
1-888-289-4095,
or email us at familystudy@jmhi.edu.
- Is there an increased risk for
schizophrenia and bipolar disorder in the Jewish community?
- The risks for schizophrenia and bipolar
disorder seem to be about 1% for any population. There have been some
studies that have suggested an increased risk for affective disorders
(including bipolar disorder) in the Jewish population, but we do not feel
that those studies have been adequately substantiated at this time.
- There is already a potential for
discrimination against Jewish individuals, as well as those with mental
illness. With this in mind, why focus on the Jewish community?
- The concern for discrimination is
valid, and we understand that participation is not an easy decision for many
participants. As described previously, the Jewish community offers great
potential to facilitate genetics studies. The more quickly we are able to
locate risk genes for these disorders, the more quickly we can expect to
offer improved treatments and medications for severe mental illnesses. In
addition, we hope that a gene discovery will lead to a better public
understanding of mental illness and a reduction in stigma. Potential
volunteers must weigh the pros and cons of the study before deciding to
participate.
- What reasons have volunteers
provided for their participation in the Johns Hopkins Family Studies?
A. A common reason for study
participation is that affected individuals and family members have suffered
due to the mental illness in their family, and they hope to reduce their
suffering and that of others through their participation. Families who
participate in the study feel that the risks of the study are outweighed by
the potential benefits. Participants often feel good about having performed a
mitzvah, or a good deed, for society.
Q. It seems like Jewish individuals
are asked to participate in more than their "fair share" of medical
studies. Why is that?
A. Researchers in many aspects of
medicine are interested in the participation of Jewish volunteers for the same
reason we are. In addition, researchers also frequently request the
participation of other populations that have historically married within their
own culture, including the Amish, Irish, and Finnish. It is true that a lot is
asked of the Jewish population, and that research findings stemming from
Jewish studies have made significant improvements in health care. Researchers
hope that the Jewish population will continue to be open to participation in
studies.
Q. Should all Jewish families who qualify participate in the Johns Hopkins
study?
A. A decision to participate in any
research study is a personal one, and each individual must come to their own
conclusions. Interested individuals should learn what is involved in
participation, as well as the study goals. Volunteers should carefully read
each informed consent document, so that they are fully aware of what their
involvement entails. Interested individuals should feel free to ask the advice
of friends, relatives, health care providers, and religious leaders.
Johns Hopkins
Schizophrenia and Bipolar Disorder Family Studies
toll free 1-888-289-4095
LINKS
to Jewish Websites
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