Wednesday, December 31, 2014


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.
  1. Is there an increased risk for schizophrenia and bipolar disorder in the Jewish community?
  1. 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.
  1. 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?
  1. 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.
  1. 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

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