Our Confidentiality Policy – Is It Really Necessary?
Let’s address the most pressing, and most common, question we field: Why can’t I know my test results?
Times change; people are less judgmental today than they were yesterday. Plus, as an adult, your body is yours to safeguard, protect, and know.
We hear you. Now, let’s break it down.
Let’s go back to the original question: Why can’t I know my test results?
Short answer: Of course you can. But keep reading, because there’s more to the story.
Here’s what our Medical Board and Rabbinical Council have found: many people say they want to know their test results. And many are happy when they view their test results if – and it’s a big if – it reveals results that are to their satisfaction.
Say you do know your test results. And your test results reveal you’re a carrier for X disease. Hopefully, you will marry and have children with someone for whom your test results are not an issue, and live happily ever after.
But rewind for a moment. You’re dating. And you have this knowledge and no idea what to do with it. Do you review your results together after a first date? Third date? A few months?
Now you run the risks of talking about your future too soon in the dating process or worse, having to make an excruciating decision with someone you’ve come to care for. You hold the burden of this knowledge by yourself, a heavy burden, and one you simply do not need to bear.
And let’s say you do decide to discuss your results. How do you decipher your genetic tests? How do you determine which combinations of which genes will impact you? You definitely don’t want to run the risk of misinterpreting your results, but unfortunately that risk is high. How should you proceed?
Rewind a bit more. You know your results, and so do several (or many) others. Hopefully, these results will have no bearing or impact on your future. But realistically, although our community has made tremendous strides, we are very far from perfect. Things that should not make a difference, do. And the stigma of carrier status, although lessened, still very much exists.
So much as we like to praise our openminded ideals and tolerance, we have to be truly honest with ourselves. Because we’re not perfect people. And we hold implicit biases more than we care to admit.
Our medical, psychological, and rabbinical councils have taken, and continue to take, the inherent fallibility of human nature into account when creating our confidentiality policy. Our gedolim factored in the complex pros and cons and crafted this policy with the utmost care and forethought. As always, we continue to follow their counsel in every arena.
And with that, we come full-circle, to our original question:
Is our confidentiality policy necessary? The answer has been and remains – yes.