As many of you are aware, our study is seeking involvement
by families with pairs of affected siblings—that is, families where at
least two siblings are both individually diagnosed with either schizophrenia
or schizoaffective disorder. For example, an eligible family might consist
of a set of parents with a daughter diagnosed with schizophrenia and a
son diagnosed with schizoaffective disorder. Or, the daughter and son could
both be diagnosed schizophrenia, or both schizoaffective. To be eligible
for our study, affected sibling pairs are not required to have parents
participate, also. The siblings alone can participate and constitute a
"family." However, participation by one or both parents is still very desirable,
whenever possible. (PLEASE NOTE: This analysis is not intended to identify
parents who have passed down ‘bad genes’ to their children). We are seeking
participation from affected sibling pairs because particularly useful genetic
analyses can be performed with sibling pairs. However, families with affected
sibling pairs are not as common as families with one ill offspring (which
is merciful fact, even if it makes our research harder). It will be much
more difficult for us to involve the target number of 300 sibling pairs
during our 5 year study than to meet our goal of involving 300 families
with one affected person. WE NEED YOUR HELP! Please, if you know of anyone
who is affected with schizophrenia or schizoaffective disorder, and has
a sibling who is also affected with one of these illnesses, mention our
study to them. Pass along to them our contact information (see box , next
column) so they can inquire more about the study, or even volunteer if
they are interested. In partnership with you, we believe it is possible
to meet our project goals and create knowledge that could lead to better
treatment and possibly even prevention of these debilitating illnesses.
Please call us!
To Contact Us
:
Our Policy Regarding Releasing the Results of Laboratory
Analyses
At a recent conference of our entire staff, several of
our research associates mentioned that a lot of families have been asking
for the results of our laboratory tests of their donated DNA. In the previous
issue of Concordance, we mentioned that although participants in the study
have a right to these results, we caution families about asking for them.
Since this seems to be a continuing issue of concern for both families
and staff alike, we thought we would go into more detail about it here.
As it says in the consent forms for the study, participants have the right
to request the results of the tests we perform in our research laboratory.
However, given our current understanding of the genetic basis of mental
illness, these results as such will probably not provide the type of information
you are looking for. To be more specific:
(1) The tests we perform cannot tell you about any family
member’s risk for developing schizophrenia or related illnesses. At this
point, we have not even begun the laboratory analyses. For economical reasons,
it makes most sense to begin analyses only after a large number of samples
have been collected. We have not quite collected enough samples yet to
begin. Just as importantly, the planned analyses are intended only to narrow
down the areas on chromosomes where the genes involved in psychotic illnesses
may be located; we cannot at all say that a particular gene or group of
genes are the ones that make you prone to illness. We simply do not have
that knowledge yet. Thus, if you are thinking of getting the results to
find out the risk of illness for yourself or relatives, you will not be
able at this point to use them for that purpose.
2) The tests we are doing are for research purposes only.
The laboratory reports you receive would be related in very technical language
which may not be meaningful to you. Furthermore, because our laboratory
is for research purposes only, the results that come from it cannot be
used by any doctor as a basis for treatment decisions for any illness.
Physicians by law can use only test results from laboratories certified
for that express purpose to help them make treatment decisions.
3) The results could be very distressing to you. We consulted
an expert in the ethical aspects of genetic research , Dr. David Shore
of NIMH, regarding this issue. He gave a clear warning that releasing
preliminary
laboratory results to participants could lead to conclusions that are often
"harmful, misleading, or wrong." Again, this is because the current knowledge
about the genetics of mental illnesses is quite limited compared to other
medical disorders. Given all of the above, we have decided that the most
ethical policy to follow is to release laboratory results to participants
only after the following things have been achieved: 1) all of our lab analyses
are complete; 2) the general results of our study have been presented before
the scientific community for criticism; 3) our results have been replicated
by other researchers; 4) a formal protocol for genetic counseling related
to mental illnesses has been developed. When all these things have been
accomplished, sufficient knowledge and structure will be in place to allow
for accurate, responsible interpretation of lab results. We hope you understand
our caution, and we ask for your patience. In future issues of Concordance
we will update you on the study’s progress, and provide any new information
regarding our policies on releasing lab results.
This item is a bit dated, but we thought it was too good
not to include. In November, at the Johnstown AMI annual banquet, I had
the pleasure of hearing Dr. Frederick J. Frese speak. He is eminently qualified
to talk about the ravages of severe mental illness: He is a clinical
psychologist
who has served Director of Psychology at Western Reserve Psychiatric Hospital;
he has taught at many different universities, and has served on the advisory
reviewing boards of five professional journals, including Schizophrenia
Journal. He currently serves as Second Vice President of its National Board
of the Alliance for the Mentally Ill, and as a consultant to the Department
of Veterans Affairs on a project to improve clinical practice. Dr. Frese
has also been diagnosed with schizophrenia. He talked about the time, when,
as a young Marine Corps officer, he became paranoid about government
conspiracies.
He talked about wandering the streets led only by the number three - which
street names had three syllables? Where was the holy trinity church? Which
street addresses were multiples of three? His words were infused with the
intensity of first-hand experience. They invited us to not. only understand
the loosened logic of a person with schizophrenia, but to, for a moment,
adopt it as our own. . The most important point Dr. Frese made, however,
was not stated in his talk. His most important statement was his own self,
the statement of a life lived without regard to the limitations schizophrenia
is supposed to impose. Despite being in and out of mental hospitalizations,
Dr. Frese managed to earn a degree in business management in addition to
Masters and Doctoral degrees in psychology from Ohio University. Of all
of his functions - advocate, healer, educator, the most important is the
most personal: that he serves as an inspiration and example that life does
not end with mental illness.
A: Yes. Although we prefer to interview persons affected
with illness face to face, we often do interviews with parents over the
phone. Also, if a parent is willing, we can arrange to have their blood
drawn by their local doctor or lab, and shipped to us. We send supplies
for the blood draw and pay any lab fees to get this done. We will even
do this for parents who are separated and living in two different places.
Q: I want to participate, but my sibling, who is also
affected, lives across the country. Do you still want me to participate?
A: Definitely yes. As mentioned elsewhere in this newsletter,
pairs of affected siblings are difficult for us to locate. In this case,
we would first interview you locally, and then plan for a future trip to
interview your sibling in person. Over the course of the five year project,
we expect clusters of families to appear in different parts of the country,
probably grouped around the same metropolitan areas. Your sibling may end
up living next to other people we would like to interview. Or perhaps one
of our staff will be visiting that part of the country for another reason.
In either case, we will fly someone to interview your sibling at some point
in the next several years. If necessary, we would make a separate trip
to do so. So please, let us know your situation before giving up.
To contact us:
call toll free at: 1-800-994-8182
or visit our web pages:
Call toll free: 1-800-994-8182
Fax: 412-624-0446
Dr. Nimgaonkar: 412-624-0823
Q: I want to participate in the study, but my parents
live in another state. Can I still be involved?
fax us at: 412-624-9464
reach Dr. Vishwajit Nimgaonkar at: 412-624-0823
schizophrenia study:
http://www.pitt.edu/~nimga/
bipolar study:
http://www.wpic.pitt.edu/research/neurogen