Where What When

Genetics-in-Shidduchim 101

I have an advanced degree in human genetics and health policy; I’ve always been especially interested in the social impact of genomic research. For my doctoral dissertation research, at the Johns Hopkins School of Public Health, I chose to study the impact of genetic testing on the Orthodox Jewish community. I named the study, “The Most Studied, the Least Understood,” because genetic research disproportionately targets Ashkenazi Jews, yet there are few studies investigating the social impact of such research.

It was while conducting research on the views and practices related to genetics in Orthodox Judaism that I wondered whether decisions pertaining to marriage were influenced by perceived genetic risk. To find out, I interviewed rabbanim, poskim, shadchanim, single and married individuals, social workers, roshei yeshiva, and finally, parents of persons of marriageable age from various Orthodox communities.

Just as I expected, I found that genetic health is an important factor in choosing a spouse, and that parents and individuals do expend efforts into checking the genetic background of a prospective shidduch, especially if there is a known disease or affliction in the family.

Questions about health do not “stand alone,” however; they are part of the overall practice in the community of making inquiries into the piety, economics, character, and yichus of a prospective shidduch. As one mother of a boy told me: “If someone suggests that my son meet so-and-so, I make inquiries. If they can’t give me references I know, I will ask what school she went to and speak to her teachers. I speak to the rabbi in the community to ascertain something about the family. I try to get someone close to the family who might be honest with me and tell me about the health status of the family. And then, if all those things are okay, I also try to ascertain something about her personality to see if there is minimal compatibility: Is she very quiet? Is she the life of the party? This is how I get an idea whether she might be a match for my son.”

It’s a Man’s World

Unfortunately, scrutiny on health issues tends to be more rigorous for young ladies. One shadchan described the problem like this: “Boys are much more marketable than the girls, because of the perception that there are more eligible girls than boys in the chareidi community. So, a boy can have a serious condition and he will get a shidduch. And the girl? She can have a pimple and she won’t! It’s the law of supply and demand.”

I talked to some mothers and their daughters, single young ladies who were having difficulty securing a shidduch because of a perceived “bad” genetic endowment. Ironically, in many cases, the issues that others considered to be highly risky genetically were in fact not genetic at all and were very manageable!

This is not surprising, given the complexity of genetic information and the lack of knowledge on the part of the public. It is for that reason that I write this article. I hope to alleviate some misconceptions I found in the community regarding genetic risk and what constitutes a heritable condition, as well as suggest possible solutions.

It Takes Two to Tango

Some may think that a woman bears the child and is therefore solely responsible for the health of the progeny. Nothing could be further from the truth! The term “it takes two to tango” certainly works in the genetic world. Both parents pass on their genetic endowment equally to the next generation. Each one of us carries about 50,000 genes (units of heredity) on 23 pairs of chromosomes. A child inherits half of his or her genetic material from the mother and half from the father.

It is essential, too, to remember that, while genes are certainly important to what we become, they work along with the environment. Unlike Tay-Sachs disease and certain other conditions that are passed directly from parents to children in a simple fashion, most conditions pertaining to health are governed by a host of genes that interact with one another – and most importantly, interact with and respond to the environment in which we live. To give a few examples, having a sibling with a seizure disorder or mental retardation does not mean that a person will have a child with either of these conditions.

Some conditions are acquired – because of a difficult birth or subsequent accident or illness, for instance – and not in any way genetic. Others follow a complex pattern of inheritance, involving combinations of many different genes. In addition – and most significantly! – Hakadosh Baruch Hu has given us advanced medical technology that provides effective treatment for some afflictions, like diabetes and hypertension, and cures for others.

Ain’t Nobody Perfect

The bottom line is that none of us is “genetically flawless.” It is a fact that all of us, regardless of our “stellar” family medical history, carry a few deleterious genes, whether we know it or not, which may never be expressed. Virtually all of us have a family history for at least one of the following: heart disease, diabetes, hypertension, Alzheimer’s disease, and certain cancers.

It is also a fact that two to three out of every 100 newborn babies will have some kind of a birth defect – most commonly, a heart defect. The vast majority of these cannot be predicted by family history, and many of them are not genetic.

It is important to define the difference between a “birth defect” and a “genetic condition.” A birth defect is an abnormality either in structure, function, or body chemistry that is present from birth and has physical and/or mental consequences. However, a birth defect is not necessarily genetic, meaning, it does not “run” in the family line. One common example is Down Syndrome (DS). The vast majority of persons with DS have this condition as a result of an accidental abnormality of chromosomal rearrangement. So, having a family history of DS does not mean that the person is any more likely than anyone else to have children with this condition.

Genetic Assessment

The organization Dor Yeshorim has increased awareness of genetics in the Orthodox community. (See sidebar.) The testing it provides is one way to alert people considering marriage as to whether, together, they are likely to have children with a specific genetic condition, such as cystic fibrosis, Tay Sachs, Canavan disease, or Bloom syndrome.

In regard to other illnesses and conditions, however, my research has unraveled many erroneous beliefs. Do they constitute a genetic condition or not? As an Orthodox physician articulated to me, “People often call me with genetic questions. There are lots of different disorders, and many people don’t have any idea whether they are genetic, or even important.”

Getting an accurate genetic risk assessment in a quick phone inquiry is rather tricky. First of all, genetics is a complex science, and demands a close familiarity with the rapidly evolving nature of the field and emerging findings of human genome research. Moreover, only a careful examination of the health history of both sides of the family would be reliable enough to be used as a basis for such an important question as “chasana or no chasana?”

So, where do we go from here?

The Benefit-Burden Concept

While Dor Yeshorim offers a reliable way to do premarital testing for recessive conditions, it does not guarantee perfect health for a myriad of other conditions that are not recessive. Simply put, there is no such things as a “free lunch.” Everything we do in life demands some compromise, some work, and yes, risk taking. When we get into our cars we take a major risk for injury and even fatal accidents, G-d forbid, but we take this risk daily because we need to get places to carry out our routines. In other words, for the benefit of driving we have to put up with the risks that driving entails: getting lost on the way to our destination, having a flat tire, or, G-d forbid, worse possibilities. In the same way, finding our bashert means taking a chance.

We hope that we and our children and loved ones will live to me’ah ve’esrim (120) in wonderful health, but we cannot predict our future, and there are no guarantees. We do not know whether the child will develop asthma, have an attention deficit disorder, or grow up to have hypertension.

The Beauty of Diversity

We have to remember, also, the special value, uniqueness, and importance of each of us in the olam (universe). Hakadosh Baruch Hu created us for a reason. (Remember the story of King David and the spider?) Our diversity is what makes the world such a wonderful place.

Having said that, if there are serious health issues in the family beyond those of the general population, it is possible to ascertain genetic risk. Just remember, it is a matter for experts. Call your doctor, and if the doctor is not sure, ask to speak to a genetic specialist. To find a genetic counselor in your area, you can log into the web site of the National Society of Genetic Counseling: www.nsgc.org

I am toying with the idea of bringing the community together to establish a “shidduchim genetic hot line,” which would be operated by trained persons who are bicultural in both the worlds of genetics and Orthodoxy. I would like to hear your comments and ideas about this. Please contact me at I_mittman@yahoo.com

To conclude, I wish to dedicate this article to the committed shadchanim, rabbanim, parents, and individuals from the community (you know who you are) who welcomed me into their homes and shared their stories with me. Let’s hope that we can all work together to bring about many successful shidduchim in the coming years.

Dr. Mittman is a certified genetic counselor and a public health expert at the Office of Minority Health and Health Disparities in the Maryland Department of Health and Hygiene.

Sidebar

The Dor Yeshorim Program

Many community members are already taking part in the Dor Yeshorim program. Launched in 1983, this program offers an accurate and confidential system of testing for recessive conditions, such as the Tay Sachs gene and nine other recessive genes prevalent in the Ashkenazi Jewish population. Recessive panel testing through Dor Yeshorim is offered for a fraction of the price that it would take in traditional clinical settings.

Because the premise of the Dor Yeshorim program is the avoidance of high risk marriages, it is good practice to check for compatibility very early in the shidduch process. The Dor Yeshorim pamphlet states: “Check for compatibility before beginning a relationship! If you are currently involved in a courtship, and you have not yet called for a compatibility check, don’t delay any longer.” It also stresses that exchanging Dor Yeshorim identification numbers is not a commitment or a marriage proposal but merely a reflection of “being a wise and caring individual.” The Dor Yeshorim headquarter’s hot line can be reached at 1-718-384-6060.

Table 1: Dor Yeshorim Testing Panel

Disease Individual Carrier Ratio Couple Incompatibility Ration

Tay-Sachs 1 in 24 1 in 576

Familial Dysautonomia 1 in 25 1 in 625

Cystic Fibrosis 1 in 26 1 in 676

Canavan Disease 1 in 37 1 in 1,369

Glycogen Storage Type 1 1 in 68 1 in 4,624

Fanconi Anemia Type C 1 in 75 1 in 5,625

Bloom Syndrome 1 in 83 1 in 6,889

Mucoplipidosis Type IV 1 in 93 1 in 8,649

Neimenn Pick 1 in 100 1 in 10,000

Gaucher Disease (by request only) 1 in 14 1 in 196

TOTAL CUMULATIVE RISK Approx. 1 in 4 Approx. 1 in 100

Table taken from the Dor Yeshorim educational pamphlet entitled “Are You or Your Children Dating?”

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Article List - September 2006