Revelations on Disclosure
I 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.
Posted on February 26, 2013, in Nicole's posts and tagged disclosure, family health history, genetics, Jewish genetic diseases, marriage, medical ethics, Program for Jewish Genetic Health, relationships. Bookmark the permalink. 1 Comment.