Knowing the results

A few years ago, I attended a lecture given by Dor Yeshorim, an organization founded in 1983 to test prospective Ashkenazi Jewish couples for genetic diseases. My parents at the forefront of this effort, being among the first to support the Tay-Sachs Association in the 1950s as I had a brother who was afflicted with this genetic disease. I have been tested, as have all my relatives for carrier status, but before the organization was formed. I attended the lecture to determine if this organization might be one I would refer people to.

I heard of the organization’s many successes but several things troubled me. The way that Dor Yeshorim operates is to test and give those tested a personal code number. When two people tested by the organization wish to marry both call with their code numbers to see if they are genetically compatible. There is no discussion as to what disease they may be a carrier for, just whether or not they are both carriers of the same disease. In the literature distributed, there was a reference to a study that states, “research studies confirm that carrier status knowledge can lead to anxiety, embarrassment, feelings of inferiority and depression.”

I came away from the lecture troubled for two reasons. The first was the research cited. It referred to a study reported in the Journal of Consulting and Clinical Psychology. Not only am I an avid reader of this particular journal, I have served on their editorial board. I was familiar with the article but not the conclusion so I reread it. In fact, the study found virtually the opposite.

The assumption was that being informed that you have the gene would be psychologically devastating. In fact, the study found just the opposite. Those suffering from sickle cell anemia reported initial embarrassment but were happy to know their status so that they might adapt their lives to the situation. A study of individuals with a genetic marker for Alzheimer’s disease was recently reported in the New England Journal of Medicine, finding similar results.

It appears that paternalistic assumptions to protect an individual by withholding information about their genetic status may very well be baseless.

The second issue, which is just now coming to the fore, is also very disconcerting. In their Ethical Guidelines, the National Society of Genetic Counselors state that genetic counselors “Enable their clients to make informed decisions, free of coercion, by providing or illuminating the necessary facts, and clarifying the alternatives and anticipated consequences.” According to these guidelines, adopted by virtually every genetic counseling organization worldwide, when testing for genetic diseases the person tested is given the facts of their situation, what disease they carry, and what it implies.

Dor Yeshorim does not do this. In response, the medical director for Dor Yeshorim indicated that disclosing what a person is a carrier of is not relevant to Dor Yeshorim because they are “not obligated” to do so in direct contradiction to the Ethical Guidelines.

What then is the obligation that we have? Too often we simply look the other way. We allow others to set the standard at a level of their own choosing and not at one that is the most ethical. The famous Zimbardo Prison experiments where subjects delivered what they believed were powerful shocks to others, conducted more than 30 years ago shows that we can all easily lose sight of ethical behavior when encouraged to. It is our obligation to see to it that this does not happen. Not with ourselves or with those who have power for us.

Dr. Salamon, a Fellow of the American Psychological Association, is the founder and director of the ADC Psychological Services in Hewlett. His most recent book “Abuse in the Jewish Community,” published by Urim Publications will be available in June.