YU Medical Ethics: Genetic Screening (Rabbi Mordechai Willig)

THESE NOTES ARE UNOFFICIAL AND UNEDITED. ANY AND ALL MISTAKES ARE MY FAULT.

Michaella Goldberg introduced R’ Mordechai Willig, explaining that the CJF (Center for the Jewish Future), Torah Activities Council, YU Medical Ethics Committee and student volunteers all helped make the evening possible.

This is R’ Willig on the Halakhic Importance of Genetic Screening-he hardly needs an introduction, he is a respected posek, etc.

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Tonight’s topic is a very important one and I’m aware by embarking upon it that there are differences of opinions in the rabbinic community, general world community and Jewish community. I am telling you MY take on it, feel free to have different opinions and/ or consult other Rabbis.

Genetics is a field that is constantly _____- more and more diseases, conditions which can now be tested for. I’m going to start at a particular starting point, going back a number of decades, more than 3 decades ago, Ashkenazi community was devastated by Tay-Sachs disease. The distinguished genetic counselor here should correct me if I am wrong; I am not an expert on Tay- Sachs, but it is a disease which exists only in a situation where both parents are carriers of a particular gene. The statistical probability is 1 in 4 per pregnancy that a child of two carriers will have Tay-Sachs. Now, it’s possible for people to get married, to live a charmed life, be carriers and be none the wiser, but it can also lead to very difficult if people become parents of numerous diseased children. The fate of a wonderful gentleman named R’ Eckstein, who lost numerous children to this, decided to do something about it. It is a rare individual who rises above his own personal suffering to do something for the benefit of the community, and I think we must regard this man as a real hero. Coming from the community of Williamsburg, not our Torah u’Madda community, with a population where people are not educated beyond high school, if that, and he found a beautiful solution to this genetic problem-

[interrupts himself]

When my children were young, I went to Dr. Gribitz, a pediatrician in Riverdale, and he complained that it’s terrible, the Ashkenazi community is being devastated by Tay-Sachs, and can you help me out and let me abort a child with Tay-Sachs; amniocentesis can see if they have it or not. So certain Rabbis might allow it- R’ Eliezer Yehuda Waldenberg who permitted abortions in these cases- now is NOT the time to talk about this; to make it short, the question is whether abortion is an act of murder or an act of wounding- if it is murder, it is definitely NOT allowed. R’ Waldenberg sees it as wounding. I happen to have a particularly sympathetic attitude toward that view.

[resumes]

R’ Eckstein founded a movement called Dor Yesharim. Every youngster, male or female, is tested at a young age- the average young girl finishes high school before she gets married after all, right? So 17 or 18 is when they are tested- and each party is given a number, and not informed of their results. Originally Dor Yesharim was only for Tay-Sachs, I believe, now they’re testing for many other diseases.

So they give you a number. Young men of marriageable age are also supposed to get tested- Williamsburg where a young man doesn’t meet a young woman in the library- the marriages there are prearranged, they brought over the European model to Williamsburg, and some of you who have had frustrating experiences [with dating] might not think that’s so bad!

Dor Yesharim’s central office is in Williamsberg- so each party is tested, the boy and the girl, and each is given numbers. So now there are three possibilities- neither party has Tay-Sachs, one is a carrier, or BOTH are carriers. So everyone can continue to live in ignorance; ignorance is shattered only in the relatively rare event that both parties have Tay-Sachs (they’ll tell you the marriage is a no-go.) Better that than the birth of Tay-Sachs children.

How do I know all this? When I was married, I didn’t know about these things, when my children started getting married, it was a known problem- so my wife and I decided to do the test ourselves- we both were negative, guaranteed, there are mutations, but statistically our children are not carriers. So we then tested for an additional six diseases, thank God, we were negative for these, too. My bias has always been to try to KNOW what’s happening- not to say anything bad about Dor Yesharim- I’m a tremendous fan of Dor Yesharim- in those communities, it is wonderful.

In our community this approach is not as popular- we can meet in a library, at summer camp, become romantically involved, etc. This couldn’t happen in Satmar- there it’s prearranged!

Also, people like to be a ware in our community.

For this reason, though I endorse Dor Yesharim, the other alternative is that you and the young man be tested and get your sheet- the parties know what they have, what they don’t have. There are about 7-11 (later corrected to 13) diseases one can be tested for through this open testing. Now, if a young man comes to me to ask me (he is a carrier for Tay-Sachs and his prospective bride is a carrier for Tay-Sachs) whether he should get married, I say, “DON’T GET MARRIED.” “But Rebbe,” he’ll say, “we’re so attached, we’re about to get engaged, we’ve been going out for three months…”

Thirty years ago, this boy and the girl he liked came to me- they were both carriers of Tay-Sachs- and I said DON’T GET MARRIED. He went to the “more liberal,” and I say this with the utmost respect, R’ Shlomo Riskin, who also told them not to get married!

I know heartstrings are taut and the Rebbe is seen as a bad guy. I’ll tell you a real story that happened last year. A talmid comes to me and says, he’s about to get engaged- and they are both carriers for Tay-Sachs. I say, “Don’t get married!” He says, “Rebbe, no problem, I have a 6-letter answer for that, IVFPGD.”

IVF stands for In-Vitro Fertilization (artificially mixed together egg and sperm in the lab) and then it is introduced to woman’s body, it’s an absolute miracle, the child is born (we’re discussing between husband and wife, NOT with donors, etc- this is not the time for that discussion-) there are times where this is necessary between husband and wife, blockage of some kind, etc.

PGD- Pre-Implantation Genetic Diagnosis. Amazing scientific fact. 8-cell unit, you can remove a cell, test in the laboratory, can see if it is carrying Tay-Sachs or not.

“So, Rebbe,” the student says, “let me get married: IVFPGD.” I told him, “Don’t get married.” Why am I being so cruel, so harsh?

My view- this solution seems so easy and simple, but in truth it is not. It involves significant emotional cost. The ideal way for a couple to have children is in the natural form. This way they’d have to constantly be on some kind of contraception except for when they want to have children through IVFPGD. Also, there is a huge difference when one cannot have the procreative/ intimate part of the relationship between husband and wife. I believe this couple should break up, pursue other relationships, etc- I met a lot of resistance, other Rabbis were brought in, they said the same thing, finally the people acceded to the Rabbis- it became tough, the parents got involved, I was the recipient of a few choice words, but fine.

Now, I DO make an exception- some cases where I give them my blessing. For example, the following case: Some genetic diseases are dominant; some are recessive. Tay-Sachs cannot exist in a child unless the two parents are carriers. So it’s something like 1 in 30 in the Ashkenazi community; you still have 29 other people you can marry! But what if s/he has a different kind of gene- no matter who s/he marries there will be a major genetic risk? Here, for this particular carrier, there are no alternatives. The only responsible way to have children then is through IVFPGB. Yesterday, I received this question. In this case, is it permissible- the young lady has to get married! Someone has to be willing to take that risk- part of the reason for doing it is because this lady has to enter into this relationship (the marital relationship) with somebody, So if this young man is willing to marry her even with this knowledge, I give my blessing. I told another couple this years ago- woman had difficult genetic situation- now they are pursuing this IVFPGB possibility.

I know that what I’m saying will sound inconsistent to some of you- I am giving you my personal view on this matter.

I’d like to open a sefer now and read you highlights from the sefer I brought with me- it is the Nishmas Avraham- there are English and Hebrew editions- on the opening page of the Even Ha’Ezra, quotes R’ Shlomo Auerbach- someone who has genetic problem and will live lives with great pain- can this person not fulfill the mitzvah of peru u’rvu? So I’ll find a woman who can’t have children and marry her! R’ Shlomo Zalman is not sure on this; R’ Moshe goes back and forth- these are serious questions. Truly serious questions.

Go further- the Shulchan Aruch tells us that a person should not marry into a family of lepers or those who suffer from epilepsy if there are 3 instances in the family- documents a case trying to avoid the case of genetic disease.

There’s a response of R’ Moshe- boy of 25 has disease called Marfans- they say that Lincoln had it-so there’s a chance the child will have it. May he marry a woman who can have children? Says R’ Moshe, if the woman is willing to marry him and HE HAS TO INFORM HER, HE HAS TO INFORM HER, otherwise marrying under false pretenses which is not allowed, then he can. (Also, an aside, by Marfan’s there is a life-expectation; not like Tay-Sachs.)

R’ Moshe says Tay-Sachs- quotes R’ Moshe’s son-in-law- tells couple NOT to get married if they carry these genes and if they ARE married they should get DIVORCED. That’s where we part company. I don’t tell them to get divorced but I do recommend IVFPGB and by abortions- well, I myself wouldn’t stand in the way of an abortion.

Now, there was a young man with Morfan’s who said he got a p’sak from R’ Soloveitchik tz’l that he didn’t have to reveal Marfan’s- how can that be? We see that if you sell a car, and there’s a scratch on the fender, you have to reveal it! So the Steipler says that by the problem of a car, we can give you another car, by Shidduchim no 2 people are the same. You are a special person and that’s why people overlook minor problems, even significant problems shouldn’t be revealed unless it is so significant that after you’re already married, it would be cause for the woman to walk out of the marriage.

There’s a Gemara in Yevamos- the father wasn’t Jewish, so no one wanted to marry his son, so the son was counseled to go somewhere else and get married- so he was supposed to withhold information! But there is another approach, and the more proper pesak in my view, that you REVEAL it, but not necessarily up front; you reveal the information at the halfway point. What’s the halfway point? Well, most people won’t get engaged in less than three months of dating, some people go on longer, I don’t like that too much, but- point is that at 6 weeks into the relationship you have to reveal it.

Situations where people I know have diabetes- they both told the partener halfway through, both got married, etc, and they can live with it. Someone will come yell at me- they wasted two months of their life dating this person, and I permitted this man/ woman not to tell about himself/ herself until two months into the relationship- and I say I am very sorry, but Rabbanim have to balance both people and s/he’s a person, too.

Now, in the same sefer, the Nishmas Avraham, it is clear that the couple have to reveal one to the other- they MUST reveal it. That’s his pesak; there’s no distinction made.

Case: Boy had cancer. Must you tell the bride? YES, absolutely must. Cases by the Tzitz Eliezer- the woman was unable to have children in a normal fashion- you must tell the boy.

There are other genetic issues which we force- different issues- my own particular way of looking at a thing, is I feel one should know one’s own situation- some genes can be addressed medically- the BRACA gene (breast-cancer gene) and colon cancer gene- prevalent in the Ashkenazi community. Particularly in families where other members of the family had this disease- the genetic component is STRONG; I think everyone would be well-advised to be tested, especially since sometimes you can DO something about it.

I know someone where the parent and the child (who was in his thirties) died one after the other of colon cancer- “Colon cancer is a preventable disease” the doctor was crying to me- you can detect it early, etc. Breast cancer is more complicated- there are radical potential medical solutions- very problematic- still, believe that knowledge is important. Health is something you should know as well. I see the tagline on this lecture was “Take responsibility for your future,” well only God in heaven is in charge of our future, but we should be God’s partner. MY view is that we should take an active role.

By recessive-genes, Dor Yeshorim or an open independent facility will test for it. But by dominant-genes (later represented as x-linked traits) Dor Yeshorim won’t touch it- you need to know. Some people want to hid their heads in the sand and not know, but…

Question- sister of prospective girl died from a certain genetic disease; the boy asked whether the girl had that gene. This is a legitimate question.

Now I will take questions- please raise your hand and speak loudly.

QUESTION: If Dor Yesharim numbers weren’t exchanged before the couple started going out, when should we swap numbers?

As SOON as possible. Someone asks me to be mesader kiddushin at the wedding; I have on my sheet the question, “MAY THEY MARRY?” and I do all the halakhic research, but I also tell them to be tested- Dor Yesharim or an open information place- I will not perform the ceremony without it.

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QUESTION: Once a couple is already married, should they get tested?

Personally I would say yes, but if they refuse, I see why that would be. I can’t say they should get divorced.

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QUESTION: What do you recommend- Dor Yesharim or open testing?

I am an equally major supporter of Dor Yeshorim or open testing. I am a FIERCE opponent of those who do neither. The average haredi couple is protected from genetic diseases and you of Yeshiva University with all your supposed advancement are not! That pains me to no end.

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(SOME MORE ANSWERS)

R’ Zilbershtein- His heart bleeds for couples needing to get divorced because they are both carriers and are married. He also opposes abortion with regard to these matters. It may also be possible that when he wrote this response, it was before the advent of IVFPGB- you can call him; he is in Bnei Brak in Israel.

QUESTION: Problem when you go out with someone who did Dor Yesharim, but you did open testing- you can’t compare. What happens?

Dor Yesharim has a policy that they are opposed to testing you after you’ve done open testing- you can’t opt for Dor Yeshorim then. Honest alternative is to have party spend more money and be tested through open testing. Of course if you already tested, and you only are a carrier for 1 disease, say, then the party can test specifically to see if he is a carrier for that disease as well, which may cost less.

QUESTION: Would you recommend testing for Dor Yeshorim first, then, and afterwards open testing?

To my knowledge, if you do that first, it should be fine. (But he can’t promise this.)

Dor Yesharim is probably cheaper- it is strongly subsidized. There is a very wonderful doctor- Dr. Susan Gross who is at Albert Einstein, neighbor of mine in Riverdale- she wants to establish a center at YU to be the so-called alternative to Dor Yesharim- and for that to also be subsidized, if not free. Remains a dream for the moment. Right now to get tested, it will cost you money.

I personally believe that all 7 diseases Dor Yesharim tests for are serious enough that they warrant this kind of testing. All diseases should be tested for- even advocate for things that are not linked to the recessive trait- like BRACA (for breast cancer.) I think this community can handle it. I’m sure I’m not always right, but…

Being Sefardi protects you from many diseases, but not all of them, and you should be tested anyway.

QUESTION: Pregnant woman allowed to be tested for Down’s Syndrome (in the baby?)

So now you’ve really opened up the Pandora’s Box. According to me, the answer is yes. Why?

1) Some Rabbis permit abortions in this case
2) If you know ahead of time, the child can be born at an advanced hospital that specializes in care for babies with Down’s Syndrome, etc
3) The knowledge that the child has Down’s Syndrome will grow on them gradually so it’s not out-of-nowhere that they find out that the baby has Down Syndrome.

I now give over the floor to Mrs. Goldenberg.

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MICHAELLA: Thanks for sharing that perspective, Rabbi Willig. Mrs. Goldenberg graduated from Stern, went to Mount Sinai….she is now teaching high school science and lecturing about genetic counseling at various places.

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I apologize- the panel’s up to 13 at NYU for the open-testing (she’s explaining that there are 13 genetic tests NYU tests for.) Thanks for having me here- lots of information on those orange sheets you have, but even so

(opens a Powerpoint presentation)

Jewish Genetic Disease Screening- I want to give you the basic facts, help you identify differences between programs, understand Dor Yesharim versus other programs and the different testing styles- review basic genetics, inheritance of autosomal-recessive diseases/ individual at risk/ facts about diseases.

Genes come in pairs. They are the basic unit of heredity; you receive chromosomes from each parent, so genes come in pairs. Mutations may be found. Mutations may, but do not always, cause diseases.

Inheritance of two non-working genes for the same trait may lead to a disease. Such a disease is now as “autosomal recessive.”

WHAT IS A CARRIER?

Person with one working and one non-working gene for the same trait. Carriers are healthy individuals without symptoms of disease. They have a 50% chance of passion on the disease, however.

75% of the time the child will be healthy, 2 out of 3 chances children will be carriers, 1 in 4 chance for each pregnancy that the child born will get the disease.

Ashkenazi- increased risk for certain autosomal recessive diseases. Ashkenazi referring to those from Central and Eastern European descent. We can study more genetic diseases within this population because it is a closely-knit group where people intermarry, more than other ethnic groups.

However, being of Sephardi descent doesn’t mean you’re safe.

SCREENING

This involves a simple blood test measuring the actual defect in DNA- the genetic alteration; it also tests enzyme levels. Lots of autosomal diseases are those where the enzyme is not working properly.

Tests can determine if both members of a couple are carriers.

Can offer parental screening.

Amniocentisis, which can be done from 15-18 weeks of pregnancy, can see whether or not the fetus is affected. CVS, which is done from 10-12 weeks of pregnancy, is a test on the tissue of the fetus.

PANEL OF TESTS

Range is a very important idea here. There is a:

Range of Severity
Range of Life-Expectancy
Difference in Carrier Frequency

And here is how common this diseases are in the Jewish community.

Tay-Sachs 1/ 25
Canavan 1/40
Niemenn-Pick 1/80
Gaucher 1/ 18
Cystic Fibrosis 1/ 25
Familial Dysautnomia 1/ 30
Fanconi Anemia (type C) 1/ 89
Maple Syrup Urine Disease 1/ 81
Bloom Syndrome 1/ 110
Mucolipidosis (type N) 1/ 122
Glycogen Storage Disease 1A 1/122
Familial hyperinsulirism 1/ 100
Fragile X syndrome 1/ 200

(these are the percentages within the Jewish community)

Now, some of these diseases (like Maple-Syrup Urine Disease and Glycogen Storage-Disease) can be treated if caught early enough- the child can be raised on a diet so as to avoid the problems that could arise.

Now, the Fragile-X Syndrome test is not offered at Dor Yesharim. There is an idea of an X-linked disease. Women carry two X-chromosomes; males carry X and Y. Fragile X-Syndrome is where there is a 50% chance that women can pass this down to their children.

IF POSITIVE

Results can be obtained within 2-3 weeks.
If one is not a carrier, results are sent directly to one’s physician.
If both members of a couple are carriers, genetic counseling is provided.
Counseling included thorough family history, additional people at risk, etc.

AT NYU

Full disclosure to you as to whether you are a carrier.
Many insurance plans are accepted.
The amount of coverage varies.
Stern College screening will be on February 21, 2007.
You can contact the NYU Medical Center for/ of Human Genetic Problems at 212-263- 5746


DOR YESHORIM

Was founded by Rabbi Josef Eckstein in the early 1980s.
You are identified by a code.
You DO have the right to ask Dor Yeshorim for which disease you (and another person) are incompatible.
Carrier status is NOT divulged to avoid stigma.
February 7, 2007 at Stern.

If you lose your ID #, you need to be retested.
The cost is $150 through Stern. On your own, it is about $200.
You can check the compatability of you and another person at any time- you just leave a message with both ID numbers on an automated voice system, and you are answered within one day.

They test for:

Tay-Sachs
Cystic Fibrosis
Fanconi Anemia
Familial hyperinsulinism
Glycogen-Storage Disease
Bloom Syndrome
Gaucher
Niemann-Pick
Mucolipidosis

WHERE YOU CAN BE TESTED

A major medical center (such as NYU)
Dor Yesharim
Obsetrician
Gynecologist

OPTIONS FOR CARRIER COUPLES

Terminate relationship.
IVF and PGD- IVF means to put eggs and sperm together in a test-tube outside of the body, PGD is test to see whether this child is positive for a disease before returning him/her to the uterus

ADVANTAGES TO FULL DISCLOSURE

Be aware of your medical status.
Sharing information with at-risk family members.
Encourage partner to go for testing.

DISADVANTAGES

Belief that knowing-pyschological burden feeling tainted/ bad gene.
Stigma of being a carrier (in the eyes of others.)
Obligation to release results to family members/ potential partners.


Jewish Genetic Disease Screening is crucial. The earlier in the relationship, the better- the choice of screening is a personal decision. Consult your parents/ Rav/ Doctor and the sooner the better. Feel free to call or contact me, Daniera Goldenberg, as well.

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Michaella says thanks to everybody.