Disclosure

[joreth]

I realize that some people have jobs or kids that can be affected by full disclosure of certain types of information, and I also am aware that some people have been dropped by their insurance companies because they developed (or discovered) a particular medical condition.

But when neither of those consequences applies to me because I do not have medical insurance to begin with, nor do I have kids, nor do I have an "employer", I fail to see why I should be concerned about my medical information getting "stolen". What is someone going to do with the information that I once had mono as a kid? Or that I'm prone to strep throat? Or that I regularly get tested for STDs? I disclose all that stuff here all the time. In fact, just a couple of posts down I spent a whole post just talking about my sleep disorders.

Someone suggested I might have some embarrassing condition that I don't want the general public to know.  That person obviously has never read my journal.  And so what if I did?  If the practical concerns of job loss, kid loss, and money loss don't apply, what's the worst that could happen to me if someone should learn about my condition?  I'll feel embarassed?  Really?  That's the worst thing?  That's a big enough concern to not take advantage of organizational technology that makes it easier to gather all my important data into one accessible location, to share that information with people who need access to it, and to contribute to the trend of eventually limiting or eliminating the ENORMOUS wasteful process of paper record-keeping?  My embarassment is really worth sacrificing all that?

I think people are overly concerned about privacy. Yes, I already mentioned above several circumstances to be concerned - I'm not saying there's NEVER a reason to be concerned about privacy. I just think it's sometimes taken too far. No one has been able to give me a reason yet why I should zealously guard my medical stats. As I said, any legitimate concern I've heard so far doesn't apply to my specific circumstances and no one has been able to offer me any other reasons.

In a Twitter debate on the subject, when I pointed out that I already AM open about my status, someone responded with "And remember there's a difference between info you have explicitly picked to reveal vs. all the information that your complete medical record would have in it."

So, here ya go, here's my complete* medical records.  Here's hoping I don't lose my insurance (oh wait, I've been unisured for 8 years) or my kids (oh wait, I'm child-free by choice), or my job (oh wait, I'm already out of work and I'm an independent contractor when I do work), or possibly reveal something personal and embarassing on the internet (oh wait I forgot about my journal and website and all those neked pics of me on tacit's website).

Age, sex, height... 32 years old Female 120 pounds 5 feet 5 inches 20.0 body mass index (BMI)

Conditions Delayed Sleep Phase Syndrom Intermittent Explosive Disorder Night Terrors More info » Non-24-Hour Sleep-Wake Syndrome Sleep Paralysis

Medications Ibuprofen - 200 mg

Allergies Codeine - Mild OxyContin - Mild Vicodin - Mild

Procedures       Abortion LASIK

Test results Chlamydia Sp DNA - Urine - tested negative on 6/9/09 Hepatitis B Virus Surface Antigen - Serum - tested negative 2/9/09 Herpes Simplex Virus DNA - Blood - tested negative on 6/6/06 high risk HPV DNA Test - tested negative 1/22/09 HIV Test - tested negative on 6/9/09 Neisseria Gonorrhoeae DNA - Cervical Mucus - tested negative on 6/9/09 Pap Smear - tested slightly abnormal on 1/19/09 Syphilis Test (RPR) - Serum - Tested negative on 6/0/09

Immunizations Hepatitis B Vaccine, Adult

*By "complete", I mean everything I can remember so far and everything that is listed in my Google Health account, which is the subject of the debate in the first place, as a digital forum that I should be afraid of trusting my sensitive medical information to

Comments

[leora.livejournal.com]

Something I've long found fascinating and hard to comprehend is that people are more afraid of public speaking than of death.

Obviously some people aren't afraid of public speaking, but if you do your best to get a large mass of people together and figure out how afraid they are of different things, public speaking is considered scarier than death.

People really are that terrified of embarrassment.

It might not be a bad ting though to start trying to find ways to teach people to be less afraid of it. Some fear is likely a good thing, but not the levels of it people have.

Personally, I tend to enjoy public speaking and I'm often really, really scared of dying and I don't ever want to. (I might want to more than I want something even worse happening to me or those I care about, but in a perfect universe I want to be alive, healthy, and living an awesome life with people I love in it who are doing likewise forever and ever.)

[joreth]

I've noticed that people seem to be terrified of embarrassment and I don't rightly understand why. I'm pretty sure I was terrified of it as a kid, but I can't put myself in that mindset anymore to understand it. Although I was never afraid of public speaking, but I hated feeling embarrassed.

The way I see it, anything that can embarrass me is something that can be used as a weapon against me. I have 2 choices, I can lock that weapon up and try really hard to keep people from ever finding it and using it ...

Or I can neutralize it so that it no longer has the power to harm me.

There are always exceptions and different people have different needs, but *in general*, I've always felt that the safer option was the second one. If I use the first method, then there's always that chance that someone could discover the dirty secret and use it to harm me. I have to invest a lot of effort into the protection of that secret. I have to watch what I say, I have to be careful of what I type, I have to make sure pictures aren't taken, I have to monitor ex-friends and ex-partners who were given access to that info to make sure they don't reveal it out of spite or revenge, and I have to come up with back-up plans and damage-control scenarios in the event that the info ever does come to light.

For the second method, it may take some extra effort up at the beginning (because working on one's insecurities is painful work), but once the information can't harm me any longer, I don't have to do anything in particular to keep people from accessing that information because they can't do anything useful with it.

I don't like the feeling of embarrassment, but the ugly truth is that life hurts sometimes. I will feel bad, I will feel embarrassed, people will pick on me, people won't like me, and people will disagree with me. That's just going to happen, so I better get used to it. Otherwise, I'll spend all my time and energy trying to make people not do that (which is futile anyway) when I could just go out and enjoy life.

I'll use a dancing analogy, because I do that.

I've always loved to dance, even though I was never particularly skilled at it. As a kid, I had no idea that I wasn't particularly skilled at it. In junior high, I had a best friend who was very conscious of appearances (there was a reason she was part of the Popular Crowd and I wasn't - she was much better at appearances than I was). We would go to the school dances but she would refuse to dance because she was afraid to look foolish. I didn't understand this at the time, all I knew was that she would stand on the side and make fun of everyone else on the floor who looked like a dork. Naturally, as a young teenager and with her being my friend, her opinion mattered to me, so I didn't dance either because I was afraid she would think that I looked like those dorks.

Until one day, she was being particularly critical of this one guy that I thought was kinda cute. I joined in the teasing at first, because that's what I did, but then I happened to get a look at his face above his flailing arms. He looked happy. And I realized that I wasn't feeling particularly happy. I was bored, and I wanted to dance but no one was asking me because I was sitting with my friend, who had a haughty look on her face.

Right there and then I decided that I was sacrificing too much in my effort to avoid looking foolish or feeling embarrassed.

So, sure, I can be embarrassed, and often am. I just don't let that stop me from taking advantage of the opportunities presented to me - or at least, I try not to ... I'm only human after all.

[aclaro.livejournal.com]

"I realize that some people have jobs or kids that can be affected by full disclosure of certain types of information, and I also am aware that some people have been dropped by their insurance companies because they developed (or discovered) a particular medical condition."

It's important not to underestimate what a big deal this is though. My entire life, I've been discriminated against because I had genetic testing done when I was 13. I have been refused insurance almost every single time I've applied for it not because of anything that is wrong with me, but because of my genetic profile. And believe it or not, I was once denied coverage because of a positive HSV-1 test! I was speechless when they told me that was the reason..

I understand being paranoid about ones medical records. It's the same kind of feeling that makes me not want to let a cop in to search my home, even if I have nothing to hide. Because I feel like if he/she wants to fuck with me, they will find something. If I'd been able to hide my medical information, my life would have been a lot easier. Having said that, though, the solution seems to be more legislation protecting us from this sort of thing (ie. GINA, the genetic discrimination act which W passed a few years ago).

[joreth]

It's important not to underestimate what a big deal this is though.

Oh, absolutely, my main point was that this doesn't apply to me, so what *other* reason is there to be concerned about Google Health's security. Their security policies do not allow Google Health to share this information with anyone I don't give them permission to (so if I wanted to keep it from my insurance company, I could). The main concern from the person I was arguing with seemed to be regarding malicious attacks on Google's security who would then gain illicit access to my records and do Something Bad with it.

*That's* the part I don't understand. What "bad" could anyone do if they happen to gain this information? Tattle on me to my insurance company? I don't have one.