Can we allow medical conditions to be linked to individuals?

+6 votes
This is rather a request than specifically an answer.

May people all over the world and with many different platforms take a lot of time to track down genetic medical conditions throughout the ages. Some conditions are passed down through genetics while others are not, and many more are uncertain.

I'd like to know if it would be possible to add a feature which allows the following:

A. Users to add medical conditions with appropriate confirmed supporting documentation to people in trees.
B. Allow searching of specific conditions within a tree.

EDIT: Based on the 2014 Affordable Care Act, it is now illegal for insurance companies to refuse insurance benefits based on pre-existing conditions. I do not believe knowledge of someone else's medical conditions can be legally held against a person, whether with insurance or not, nor can any employer refuse them a job based on medical conditions. Privacy nonetheless should be an issue not taken lightly; however, individuals have the right and should be given a choice on whether or not they'd like to publicize their conditions. Additionally, the 'assumption' you might have a condition because two of your grandparents have it is ludicrous.
in WikiTree Tech by Shawn Wright G2G1 (1.0k points)
edited by Shawn Wright
Privacy of information is legislated nationally and sometimes regionally. It varies widely around the world so you question should be location specific

2 Answers

+10 votes
Best answer
I do not think putting that information in a public forum would be a good thing to do. I do not think advertising what your future medical condition may be would serve any good purpose. There are private genetic testing programs that can help with that. Just my opinion.
by Rodney Long G2G6 Pilot (558k points)
selected by Jeannette Saladino
I agree with Rodney.  Too many potential privacy issues.
I can respectfully disagree :) Everyone who manages a 'person' in wikitree can manage the privacy of said condition. Just because something's linked in a tree doesn't mean everyone can see it. Either way, I think this is a tool not only many people would LOVE to have, but if you look at several other trees, there are constantly people linking medical conditions within the images on the individuals in a tree, etc. to help them track the condition. Just because it's a public forum doesn't mean wikitree doesn't suddenly not have privacy protocols.
that is what makes us great " reasonable men can reasonably differ"
Almost all of my g/grandparents were born long enough ago that their profiles have to be Open.  If someone links a potentially hereditary condition to them, that shows that I could have the same condition.
I see. I never understood this path on privacy anyways. If someone is alive and actively managing a tree, then any and all people on the tree should be able to have their privacy managed. But I do see your point.

Personally, I don't care if people know my medical conditions, it's not like they can do anything about it or do anything with that information. However, privacy is a personal matter, so I do understand that. But shouldn't people be given the option for that? Simply because you don't want your information shared doesn't mean I don't as well. Why should we deny everyone the ability to use this as a tool when not everyone is concerned about privacy of medical conditions?
Well, actually, they *could* do something with the knowledge.  They could even deny your application for insurance, for example, if you have a pre-existing medical condition.
Understandable. Again, something in society I just don't agree with, but it's a thing. The whole 'denying someone's insurance based on pre-existing conditions' is ludicous. It's not like they can just 'stop' being sick. Medical is expensive, especially in the US, but that's the whole point behind insurance. I'd rather pay an expensive premium than owe my entire medical bill regardless; however, insurance companies want to take the coverage away entirely.

With that said, I'd propose a change to wikitree's privacy policy if such a tool were created. Obvious HIPAA laws are in place for a reason, but if someone WANTS to share their own information, there's no reason to stop them. And if someone is dead then I don't think (I'm not 100% on this?) that their medical information is protected anymore, although it may be for a select number of years.

Regardless, people already use this method for tracking known conditions like Parkinson's and Alzheimer's in their family lines. I don't see any reason to deny them the ability for such a tool, so long as it's managed correctly.
Ros, I'd like to bring up the reminder that according to the 2014 Affordable Care Act, it is federally illegal for Insurance companies to refuse insurance based on pre-existing conditions.
Thanks.  "federally" suggests it is the rule in the US.  I am in a different country, however.  Some insurance companies will provide limited insurance i.e.
I have diabetes
a.  if I fell off a ladder, I could claim; but
b.  If I ended up in hospital because I had just eaten loads of sugar and got dizzy, it is doubtful they would honour a claim

but some insurance companies just plain won't accept you.
you can call denying someone insurance because of pre-existing condition "ludicrous", but I saw insurances do that.

"If there is a pre-existing problem with ..., we will insure everything else, but not ..." (which is the biggest problem).

So they already use information which is available. Now who knows, when they have a look on your public wiki-tree and see both your great-granddad and your granddad died of a stroke, they might tell you "we won't insure your risk for stroke".

This is one of the reasons why I don't like causes of deaths here on the tree.
+1 vote
You could always use categories to track medical conditions. There are some listed here:

Searching a tree is a bit tricky depending on how you define a tree. If you want to see everyone in the single tree that is WikiTree, you can just view the list of profiles in a specific category. If you just want profiles that you manage, you can limit a category to just the profiles in your watchlist. There currently isn't a way to see all blood relatives with a specific category.
by Jamie Nelson G2G6 Pilot (367k points)

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