Anybody interested in the genealogy of family diseases? [closed]

+9 votes
149 views

I suspect that this topic is taboo, since no related questions or matching tags were suggested whatever I typed. I'm bracing myself for my first-ever question on G2G with a negative number of votes.

I belong to an ethnic group of which it has been said that the question is not whether one is a carrier of a family disease, but which disease(s) one carries. My mother was a Janse van Rensburg. One of my grandchildren has already died from an inherited disease, and her sister has been diagnosed with it.

There is a certain literature on genealogy applied to research on genetic disorders. There must be a community of researchers in that area. I wish to join them. I owe that to Marielé.

In an ideal world, there would be a Wikitree project devoted to the topic. In this one, if the only positive responses I get are some private messages from like-minded folk, that would as much as I am hoping for.

WikiTree profile:
closed with the note: I was right — the topic ''is'' taboo.
in Genealogy Help by Dirk Laurie G2G6 Mach 3 (35.7k points)
closed by Dirk Laurie

3 Answers

+7 votes
 
Best answer
My wife researches genetic disorders, and would be greatly interested in putting together a way to do this, but it would need to have absolute security.  Not only is the information legally sensitive, it can also be used to deny or raise the price of healthcare insurance or, in an extreme, to weed out possible mates.

With that said, it can also be highly important in an informed world to know what we are preinclined to have issues with so that we can take early steps to mitigate them.  If nothing else, being aware can help younger generations to prepare for the onset of conditions in whatever manner they deem fit.

There are accepted ways for esearch labs helping out families with a genetic diagnosis without inadvertently sharing that information, but they are under doctor/patient privilege.  Here on WikiTree, there is just no level of trust with which you could accurately set a piece of information with that level of security.
by Brian Bourn G2G5 (5.7k points)
selected by Dirk Laurie
+7 votes
Both G2G and Wikitree are too open to be a safe place to reveal genetic disorders. An individual posting about their own health issues would effectively be implicating others without consent.
by Lynda Crackett G2G6 Pilot (630k points)
Caryl, Thanks for the best answer star.
Wikitree allows me to create a Free-Space, mark it red private, and have total control about whom I admit to the Trusted List. If that is too open to be a safe place, we have a problem.
+7 votes
Way TMI (too much information) to be adding to a Genealogy website.
by Robynne Lozier G2G6 Pilot (928k points)

Privacy and respect of their right to confidentiality has and will always be the  stumbling block Dirk

I could not find a group but then again that was back in 1984. Internet was not such a big "thing" then.  

I can only suggest the following 

In my family as I collected information we started a closed group where family members could join only by invitation, with a request that privacy and confidentiality was key.  

The information was available but restricted. 

Sad - but best we could do. 

The Mayo Clinic has a page -  Medical History : Compiling you medical tree - should you need to send family members a page on how to : 

En as ek mag: 

My innige meegevoel. Ek verstaan die totale verslaentheid en magteloosheid as mens se eie so 'n pad moet stap. 

 

This would have been best answer, but it was posted as a comment.

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