Dor yeshorim and the Non-disclosure policy

I am so sorry that it took me so long to post again, life is just catching up with me, but I will really try to keep up the pace of at least two posts each week.  We ended last post with a discussion of genetic counselling, and I want to really start getting into the main purpose of this discussion.  I described to you last time the basics of modern genetic counseling, and now I would like to discuss the common and popular approaches of the orthodox community towards this important issue at the current time.

I could summarize the way this issue is dealt with by the orthodox community by dividing it into in three distinct approaches.

1. The first approach is to ignore the topic altogether.  In rare cases, this is a deliberate decision on the part of the parties involved, and sometimes even involves religious justifications, such as the claim that they are "having simple faith" in God.  However, usually it is simply out of sheer ignorance, misplaced fear, or lack of education.  Clearly this approach is extremely dangerous and can lead to unnecessary suffering and terrible consequences.
2. The second approach is the Dor Yesharim approach, which will be described in detail later in today's discussion
3. The third is an educated and thorough discussion with a qualified physician or genetic counselor as we described in the last post.

Since we described the third approach last time, I will paste here a description of the Dor Yesharim approach so that everyone can familiarize themselves with it.  I will freely admit that I cut and pasted this from wikipedia and other online sources, but it is a pretty reasonable and unbiased description of the program, and enough to get the idea of how it works.  The Dor Yesharim approach has had major success in the "Chareidi" world, and has become the primary exposure for most people in that population to genetic testing.  It has received endorsements from major "Gedolim" and has been quite successful.
 
Dor Yesharim is an organization founded to prevent recessive genetic diseases. It is based out of New York and was founded by in the early 1980's 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 genetic screening program for Jewish diseases in the yeshivish world. (Indeed, it is not uncommon for Orthodox Jewish day schools to sponsor screenings for all their high school students). As of September 2006, over 800 incompatible matches had been prevented.
 
The Dor Yesharim screening program is most effective with those of entirely Ashkenazic descent. Anyone with even a small heritage other than Ashkenanic descent (even one grandparent), may experience reduced reliability. (This may be of special concern to those with Sephardim or Geirim (Converts) in their background). This general background information is noted at the time of testing, to assist interpreting the results.

The program itself is designed to protect the privacy of the individuals involved, and and avoid the risk of stigmatizing a young single or their family members.

An article about Dor Yesharim was published in the June 2006 issue of the Where • What • When magazine, entitled "An Avoidable Tragedy".

Here's how it works, in a nutshell:

Singles have blood taken and their samples labelled with an anonymous identification number, and a control number. These are sent to special labs in New York where they are tested and catalogued. In addition, a contact telephone number is sent along with the sample, and results will only be given via return call to the phone number submitted with the samples, at the time of testing. The singles are normally given a booklet when they are tested, with their identification and control number stickers affixed, as well as, other information about Dor Yeshorim included. The booklet also contains a place to record information, in case the booklet is lost. All results are identified anonymously by number, not by name. The results are kept confidential and will not be released to any individual, not even to the persons themselves. The only information typically released is the response regarding a particular shidduch's genetic compatibility: compatible or incompatible.

However, if a couple is found to be incompatible, and if they request this information, the couple will be informed of the disease for which they are incompatible, the symptoms, and the specific risks they face.
If an individual has a family history of a genetic disease, even a "non-Jewish" one, Dor Yeshorim recommends that they be informed of this, as well (for example, they might run additional tests, if aware of this risk). They can provide confidential counseling, referral, and support services to families afflicted with genetic disease.
Before a shidduch begins (or as early as possible), one or the other parties in the shidduch contacts Dor Yeshorim, and using both each person's anonymous identification number and the birth date of each person, to check if the individuals together are genetically compatible (as noted above). The only information normally revealed is whether the specific couple are incompatible genetically with each other. However, if the couple requests, they will be informed of the disease for which they are incompatible, the symptoms, and the specific risks they face.
There are several rules specific to to Dor Yeshorim:

• Individuals who are engaged, married, already tested, or otherwise aware of their carrier status are not eligible to participate in this program.
• Results will only be left with the phone number registered at the time of testing. If your phone number changes, Dor Yeshorim needs to be notified as soon as possible.
• If you lose your identification number, you will need be re-tested all over again. Since it is entirely anonymous, Dor Yeshorim cannot connect you with your test results, if you lose your identification number.

Currently, the Dor Yeshorim program generally tests for:

• Tay-Sachs Disease
• Cystic Fibrosis
• Canavan Disease (patent-pending)
• Fanconia Anemia
• Familial Dysautonomia (Riley-Day Syndrome)
• Glycogen Storage (Type 1a) / Von Gierke Disease
• Bloom's Syndrome
• Gaucher Disease (on demand only)
• Niemann-Pick Disease
• Mucolipidosis IV

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.

Those who have already been tested through another screening program, or who are already married or engaged are not eligible for Dor Yeshorim's screening program.The costs and processing times vary by screening venue.For those tested at mass screenings (e.g. Jewish high school-hosted screenings), the cost per person is typically $150 per person, and results may take 3-4 months to process.

For those tested individually, the cost is $200, and results may take 2-3 weeks, from the time the sample is received in New York (so, realistically expect 4-6 weeks, if tested in the Mid-Atlantic area).
If tested in New York, should it be absolutely necessary, there is an emergency, expedited processing available.

In the next post we will talk in more detail about the philosophy of Dor Yesharim, and try to analyze their approach from a rationalist perspective.