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Family Health Histories: We All Have Them

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Last Thanksgiving, Chani wrote a great blog post to remind people that family health history is one of the best tools that we have to assess genetic risks for our patients, and to encourage our readers to discuss this topic over the holidays. This Thanksgiving, I am thinking about this some more and I would like to add another element to this theme.

Recently, I have met with several families with mental health issues. Many of them are particularly worried about the stigma that this can have on the affected individual. But beyond that, I am finding that the siblings of those individuals are concerned about their “marriageability.” These siblings worry that they may not be desirable for fear of developing mental illness themselves and of passing on the mental health problem to the next generation.

It is important to note that all forms of mental illness are multifactorial. This means that there is some genetic component that can actually involve multiple genes, as well as some environmental or situational component to trigger its onset. This is why it is not surprising to see that mental illness will ‘run in a family,’ but that not everyone will be affected.  So if a brother has mental illness, each of his siblings and his nieces and nephews will have a higher-than-average risk to develop the same or a related condition, but this is not definite.

Dr. Goldwaser (one of our fantastic genetics attendings) once said something very smart and sensitive that also has been touched on in another blog from our program and at some of our events. We all have something in our families—whether it is mental illness, predisposition to cancer, or more common conditions like diabetes or hypertension. And some of us don’t even realize we have things going on. But the fact is that we are all carriers of about 5-10 autosomal recessive diseases! So while some things may be more public and seem more apparent than others, others are less conspicuous. But they are still there. Nobody is exempt.

I am finding that mental health issues are particularly taboo. People are so scared to talk about this, and even more so, to get involved with families who are affected. This is not unreasonable—we all know which life challenges we think we can handle and which ones we cannot. But I want to urge you this Thanksgiving not only to be open about health history, but to be sensitive to the fact that if you dig deep enough, you will be sure to find something genetic in just about any family. Why should mental health issues be more disqualifying in the realm of marriage compatibility than any other disease?

 

Revelations on Disclosure

to tell or not to tellI recently went to one of our Program’s educational events, where I participated as an audience member as opposed to one of the speakers. The event centered on the topic of whether, how, and when to disclose personal genetic health issues to a potential spouse (see February 2013 educational program at www.yu.edu/genetichealth/events).  The program was moderated by one of the PJGH genetic counselors, and included a panel composed of a Rabbi, a psychiatrist, and a connector (a.k.a. a professional matchmaker).

Since the program was recorded and is available online, I won’t go into many details here.  However, I thought that I would use our blog to relate some overall take home messages and then to share some comments from other participants.

The first take-home message should be an obvious one. Disclosure is essential, because any relationship that begins with the conscious hiding of personal information from one’s partner is a relationship that is not based on trust and is therefore tenuous.   The second take-home message is that everyone has issues, some of which have been recognized/diagnosed and others which have not (yet?) been.  And, we as a community should be more sensitive to and tolerant of these issues as opposed to reflexively creating stigmas or rejections around them.  I point the readers to a very poignant article on this topic in The Jewish Week, to get you started on your sensitivity building.

OK, now onto some comments.  There was a great turnout for the event, a mix of men and women of all ages.  But, before the program started, I heard from two separate audience members that their friends would have attended, but “feared that if they had come, then other people in the audience would think that there was a genetic issue running in their families.”  Being one of the organizers of the event and also being immersed in the field, initially I was disheartened by these sentiments.  But, stepping back a bit, I can sort of understand this perspective.

After the event I received a very uplifting email from another participant.  She remarked “it’s like you have discovered and opened up a whole new world of discussion, involving so many people from different walks of life who have been affected by the problem either directly or professionally…It is now ok to talk about this topic in public and try to find solutions based on common sense.”

I hope that, over time, more people will come to realize that educating ourselves and talking about issues such as these will have long-term positive ramifications not only for individuals and marriages, but also for the character of the community as a whole.

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