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Home and Family

ASK THE SHADCHAN
Premarital Genetic Screening Jewish Heredity Issues

By Rebbetzin Nomi Travis

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

 

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