Part II
As a shadchan, I come across genetic issues more often
than you would imagine. Some specific queries raised my
interest in the subject. I found myself doing research about
particular conditions and their medical consequences. Knowing
what the situation entails, I am able to be a better
intermediary. Although we would rather not face health and
heredity issues, we know that they can't be ignored. While
there has been increased awareness and even collective Dor
Yesharim testing in large seminaries, there is still a wide
lack of information.
Ethics Unlike other areas of medical ethics, where
there is a pre-existing dilemma that requires an answer, the
area of genetic screening begins with the question of whether
we should screen at all. While screening for genetic diseases
raises many ethical questions, no issues arise if a person
chooses not to assess his genetic material. A diagnosis of
genetically inherited disease only occurs when a person's
genetic material is compared with any of the known genetic
defects that have been discovered.
In secular medical ethics, a premium is placed upon autonomy.
A patient makes his or her decisions based solely upon
his/her own self-interests; after all, we are the owners of
our own bodies. However, according to Jewish tradition, G-d
owns everything in the world including the bodies of every
human being. When we make decisions regarding such topics as
medical care, organ transplants, and genetic screening, the
basis of our decision should be what is proper according to
Jewish tradition. This may not always coincide with what an
individual feels is in his or her own best interests.
While the Torah obligates us to guard our health, Rabbi
Moshe Feinstein favored testing, considering it might be a
moral obligation. He stated that while one may usually ignore
a small risk that society finds acceptable, not being
evaluated for Tay-Sachs, for example, is like closing one's
eyes to an obvious danger. He also pointed out the severe
emotional repercussions of not checking if a seriously ill
child is likely to be born.
Some argue that limitations to the predictive ability of
genetic testing include that individual genes are only part
of the puzzle. Although the exact roles of environmental and
genetic factors are unknown in all these diseases, it is
strongly felt that both factors contribute to the disease
process. The Torah directs us to make use of the medical
information available in order to avoid danger whenever
possible. Receiving timely genetic screening and counseling
are ways in which the patient participates with medical
professionals in the healing process. It can spare parents
great mental distress. By not getting married, such couples
are not faced with concern over a fetus that will likely be
afflicted with a genetic disorder or a child born into a life
of great pain and suffering who would die prematurely.
Once a couple is married, or a child is conceived, the
halachic issues are much more complex, so the Rabbinic
authorities focus mainly on preventing such marriages. The
double tragedy is that modern medical technology now enables
us to predict and prevent many of these horrific diseases.
Experts in genetic testing and Jewish law are working to
develop programs to prevent Jewish genetic disorders, in a
proper, Torah approved manner.
Testing for carriers Carrier testing is used in family
planning to determine your chance of passing a genetic
disorder on to your children. Even if the couple doesn't have
a family history of genetic disorders, the spouses can be
potential carriers. The tests assess if either of you carry
the genes associated with diseases such as cystic fibrosis,
Tay-Sachs or sickle cell disease. Your child's risk of having
the disorder depends on how it's passed. In so-called
recessive disorders, such as sickle cell disease, your child
needs to inherit two bad copies of the gene — one from
each parent — to develop the disease. In this case,
being a carrier cannot affect future generations unless both
parents are carriers of the same genetic disease. Dominant
disorders require that only one mutated gene be present to
inherit the disorder, such as in polycystic kidney disease.
According to an American National Center for Human Genome
Research, "The physical risks of the gene test itself —
usually no more than giving a blood sample — are
minimal. Any potential risks have more to do with the way the
results of the test might change a person's life."
Dor Yesharim Dor Yesharim is an Orthodox group of
nonprofit genetic screening tests for a variety of
recessively inherited diseases. It was founded in the early
1980s by Rabbi Josef Ekstein, who had four of his own
children die of Tay-Sachs disease. It is endorsed by many
physicians and several major Torah authorities, and is the
most commonly used screening program for Jewish diseases in
the yeshiva world. Widespread testing has also been strongly
encouraged by all segments of the Jewish community. With
Hadassah as its Israel testing center, the group's strategy,
it claims, has reduced Tay-Sachs by 90 percent.
In response to an inquiry by the Association of Orthodox
Jewish Scientists (AOJS) HaRav Moshe Feinstein zt"l
published a responsa with halachic parameters for screening.
Rabbi Feinstein feared that testing could hurt the self-
image of those testing positive and lead to discrimination
against them when seeking a spouse. He recognized that
despite assurances from the medical community that carrying
the Tay- Sachs trait presents no health issues for the
individual or his offspring (so long as both spouses are not
carriers), many people will shun marrying into a family with
a "genetic defect." Therefore, Rabbi Feinstein insisted on
safeguards to protect confidentiality, advising testing of
youngsters only when they are prepared to start dating.
Following his directives, Dor Yesharim ensures the privacy of
the individuals involved, avoiding the risk of stigmatizing a
young single or his family members. The fragmented data could
otherwise prove hazardous to your insurability and your
employability. Who would want to hire an employee who may
develop early-onset Alzheimer's, or potentially be laid up
for months at a time from cancer treatments? Though you may
be absolutely asymptomatic and totally well, knowledge of
your gene status would put you in a high-risk category.
Genetic discrimination is very real and very dangerous.
As Dr. Friedman indicated, "Unfortunately, some couples wait
till the last minute to confirm their compatibility. They'll
call in their confidential numbers when they're on the verge
of announcing their engagement and have invested in a
significant emotional attachment. Then they're under stress
and we're under duress. It's not fair and occasionally very
painful. Recently a couple who were about to announce their
engagement broke it off instead. They were informed that they
were incompatible. The 'are you sures?' went back and forth
for days. Eventually they decided to go for independent lab
testing, which only confirmed their fears. If they had
checked their numbers in a timely manner, preferably even
before meeting for the first time, before any emotional bonds
are activated, they would have been spared much anguish.
Startlingly, certain couples confirmed incompatible and were
stringently advised to break their engagement, refused to do
so and were married, intentionally putting themselves in
harm's way.
How does it work? For interested participants, a
simple blood test is all that is necessary to be tested for
nine disorders: Tay-Sachs, Cystic Fibrosis, Canavan Disease,
Familial Dysautonomia, Fanconi Anemia Type C, Bloom syndrome,
Gaucher Disease Type I, Mucolipidosis Type IV, and Glycogen
Storage Disorder Type I (Sephardic). In addition, Dor
Yeshorim may also test for other genetic diseases and
mutations of existing diseases in a research capacity,
unofficially, and proports to be the most thorough program of
testing with regards to Jewish genetic diseases.
All results are identified anonymously, by number, not by
name. Upon comparison, the match is suitable as long as both
parties are not carriers of the same recessive trait. Neither
is told of the carrier status — the only information
revealed is regarding a particular match: compatible or
incompatible. If the couple is unsuited, genetic counseling
is provided over the phone, and referrals for additional
genetic counseling in the participants' area are made as
needed. If individuals have used this system in the past, Dor
Yeshorim can update testing for any of the diseases for which
screening is now available, such as Familial Dysautonomia. If
individuals are already engaged or married, they will not be
able to use the system.
In addition to Dor Yesharim, other institutions are also
working to develop the educational tools to make preventive
genetic testing easily accessible and a normal part of health
care for all Jews. While G-d is the true Healer, Judaism
teaches us that the doctor is His emissary. We are enjoined
to utilize all medical technology and knowledge, within the
parameters of Jewish law, to enhance and protect the precious
gift of life.
Rebbetzin Travis has many years of experience and success
in helping people through shidduchim. Please note that
all names have been changed unless specified, with the
exception of well-known public figures like Gedolim
and educators. Any comments, questions and stories can be
sent to: travisdn@013.net or at (02) 656- 3111
