Genetic Testing: Tay Sachs and Jewish Ethics

Rabbi Gary S. Creditor
March 31, 2000

Scientific research has revealed an entire universe of knowledge, which is opening up possibilities of healing never before even contemplated. Scientists can now peer inside the smallest building block of our bodies. As much as astronomers are seeking to peer into the furthermost reaches of the universe to see the beginning of calculable time, laboratory researchers are seeking to go back to beginning moments of the creation of our bodies, our very selves. Cloning opens up the possibility of creating organs that can be harvested, eliminating the reliance on organ donations and transplants. This is the most exciting of times. The current advances and those coming in the next months, year, portend advances in curing with illnesses and diseases. Decades ago Gene Roddenbery gave Bones, the doctor on Star Trek, a little gadget with which he could instantly scan the body, make an immediate diagnosis and nearly instantly cure every member of the crew. I suppose that from the far beyond, Gene Roddenbery is having a cosmic chuckle, seeing how close we are coming to that which he imagined.

Isaac Newton's formula of action and reaction has its parallel in medical science. Every advance creates an equal or near-equal danger. Just as we want the "good" that scientific research offers us, we also cannot be aloof from the potential "evil." There are ethical and moral questions that are present at every juncture, with every discovery. Twenty years ago I was invited to be a member of an ethics committee of a local community hospital. In our few meetings it was clear that we could hardly realize the intricate maze of moral dilemmas that were being created and continued to multiply. There were macro-ethical and micro-ethical questions. The religious community was and is involved in these matters, not because we are scientists, though I am personally fascinated, but because the real issues are:

What do we do with this knowledge?

Is there knowledge so dangerous that it shouldn't be obtained?

Does this knowledge advance our humanity?

Does this knowledge dehumanize us, reducing us to body parts and chemical

components?

In my Rabbinate I have sat with families and individuals as new medical technology has affected and/or intruded into their lives at all ranges of the age spectrum. Sometimes the answers to gut-wrenching questions seemed easy. I had antecedents in Jewish law, current decisions of the Rabbinical Assembly Committee on Law and Standards, or obvious references in Bible or Rabbinics to illuminate the path. More often than not, I needed to search my heart and mind for appropriate words, which did not come easily. I can tell you that there is no comparison of studying the subject theoretically and holding people's hands as they deal with the crisis. It reinforces your humanity and humility.

With this introduction I could write several different sermons. On future Shabbatot I will go off on different tangents that begin here. Tonight I want to share a few thoughts in response to a presentation made this week at the Maimonides Society Dinner, whose honoree is our dear and devoted past president and personal friend, Dr. Albert Wasserman. He is most deserving of the honor. The featured speaker, while referring to a core medical knowledge about Genetic Testing, specifically referred to Tay Sachs, a genetic disease found mostly among Jews of Ashkenazic descent. I will not belabor the details. Suffice it to say that a Tay Sachs child lives but a brief life. As another Jewish genetic disease, Canavans, is similar in result though medically different, families of both are in the same support group. Over the years I have been the Rabbi for several of these families. It is a terrible and terrifying disease, for which there is no present cure. But there are genetic tests - simply done blood tests that can tell whether or not who is a carrier of that gene. Until "Bones" can wave his gizmo and magically fix the gene, an advance that might come, and I pray, does come, sooner than we can imagine, there are ethical and medical issues that demand answers. These are a few. These are my responses.

Q. Who should be tested for the Tay Sachs gene?

A. Every bride and groom before their marriage. In my premarital counseling session, which is part of planning for a wedding, I give them a concise document, which describes the disease and the chances of having a Tay Sachs baby. I also give them a list of places, which do testing. Some medical insurance will also pay for it. I tell them that it is more important to pay for that test than any other expense for the wedding. I tell them that once a chapter is written in our personal histories, it can never be erased from the hard-drives of our memories. Don't write a tragedy that doesn't have to be written, which you will never forget.

Q. Why should they be tested?

A. Knowledge enables us to make decisions. If only one is a carrier, then their children could only be carriers. If neither is a carrier, there is nothing to worry about. If both are carriers, they are faced with most difficult questions:

Should they just not procreate and instead adopt?

One of Judaism's teachings is the mitzvah of personally procreating, peru u'revu. It is an intricate and personal discussion whether or not to attempt to fulfill this mitzvah. Judaism offers several models for us to follow.

Should they procreate and then do amniocentesis?

If the test is negative, there are no issues.

If the test is positive, should she carry to term?

Should she terminate the pregnancy?

Judaism usually reserves this only when the life of the mother is threatened? What kinds of threats to the mother are present here? Conservative Judaism takes into account the spiritual, psychological threats to the mother, expanding Jewish law's concern beyond just the physical threat. In hours of crisis I have supported women in their decision to abort, more deeply understanding what really happens to a person in these moments. There are many different types of threats. While abortion should never be used as after-the-fact birth control, there are times that Judaism would warrant it.

Q. Should screening for Tay Sachs and other genetic diseases be done earlier and its knowledge used to preclude marriage? [The speaker suggested this.]

A. General screening is unnecessary. The speaker did make an excellent observation: all of us are carrying around some crazy gene or another. What are supposed to do: list our defective genes on the back of our driver's license? This knowledge is only relevant when a couple is intending to create babies. Most assuredly, we love our spouses for much deeper and higher reasons, and such knowledge must never destroy or interfere with our love. Should we not marry because we will get sick and need tending?

Should we not marry because we will all age, if God blesses us with age, and need more tending?

Couples should never not get married because they carry the Tay Sachs gene. They have to act responsibly once they are. We don't need to walk around wearing a label or with a heavy heart. We should never have to ask a date: "What's your genetics?" as we ask where they want to eat.

There are many more questions on this issue and many more issues that I will explore on other evenings. As we celebrate a Bar Mitzvah, look at the children of this age, I think of all the children with whom I have stood over the quarter century of my Rabbinate. I think of the couples I have married and those scheduled in the coming months. Especially under chuppah, of think of their future, the unborn generation waiting to be created. Genetic testing, genetic engineering can remove from humanity many illnesses and dread diseases. I pray that God will continue to impart this knowledge from His cosmic storehouse. Knowing humanity, we must be vigilant of its utilization and watchful of its application. May it bring a refuah shelemah - a complete healing - to those afflicted. May our children grow up with happiness, wholeness, and peace.