Your healthcare privacy is dying and why you’ll kill it

Two days ago I told my friends on friendfeed that I had a rare kidney disease and that I could no longer eat red meat or drink Diet Coke or Pepsi, among other dietary changes. Don’t worry, my dad has the same disease and he’s still doing fine, and the doctors have run a crapload of tests and found that I’m otherwise healthy.

But look what happened. 200+ comments.

That prompted me to write another friendfeed item saying that health privacy is dead. I gave a ton of reasons and lots of other people jumped in and either agreed or argued with me.

So, how about you? Why don’t you join in on these two threads, or leave a comment here, about why or why not you will share your medical condition with the public.

117 thoughts on “Your healthcare privacy is dying and why you’ll kill it

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  2. I have issues with depression and anxiety. There is no way in hell I would post about this publicly, with my real name. Why? Because in this age of so-called great technology, we still are living in the Dark Ages, when it comes to attitudes about certain health conditions. For example, addiction has now been proven to be a physical disease, rooted in biochemistry and genetics, but the vast majority of people still ignorantly believe that it is a moral deficiency. A lot of people even still consider addicts to be subhuman, not worthy of compassion. So — even though we are fairly advanced technologically, we are still pretty primitive in our social development. For that reason, I don't think it's a good idea to go public on health issues.

  3. Scoble, Welcome to the club of non-insurables. Forget about finding individual health insurance. No insurance company will underwrite you because now you have a Kidney disease. If you do get to ESRD/(CKD stage 5) at least there is Medicare. You have to work for a company the rest of your life. Sucks.

  4. Scoble, Welcome to the club of non-insurables. Forget about finding individual health insurance. No insurance company will underwrite you because now you have a Kidney disease. If you do get to ESRD/(CKD stage 5) at least there is Medicare. You have to work for a company the rest of your life. Sucks.

  5. I am a veteral. Right now my information is in the VA System. While I do cherish my privacy. I like the prospects that I can go to a VA anywhere and be taken care of. The problem is I guess how much invasion to accept.

    Another good that could come from the sharing, is that the more information that you have on a subject or illeness. The better the resurch is in curing that illness.

    So we weigh the benifit against the cost. At some point though, it will be determined by how the information is used. For any good can be offset with a bad.

  6. I am a veteral. Right now my information is in the VA System. While I do cherish my privacy. I like the prospects that I can go to a VA anywhere and be taken care of. The problem is I guess how much invasion to accept.

    Another good that could come from the sharing, is that the more information that you have on a subject or illeness. The better the resurch is in curing that illness.

    So we weigh the benifit against the cost. At some point though, it will be determined by how the information is used. For any good can be offset with a bad.

  7. I would agree that it’s up to the individual to decide what to share or not share. Obviously, we don’t want our medical caregivers giving out this information. Personally, I share medical problems on twitter because what I share won’t make a difference with respect to employability or insurance. If it were something like cancer, I think I’d share it because I’d get more support and advice; I think my first priority would be surviving. If I die, what good would my privacy do?

    As for getting an STD or some other embarrassing disease, if you are the type to go out and do those things, chances are people already expect it from you. You’re not going to shock anybody.

  8. I would agree that it’s up to the individual to decide what to share or not share. Obviously, we don’t want our medical caregivers giving out this information. Personally, I share medical problems on twitter because what I share won’t make a difference with respect to employability or insurance. If it were something like cancer, I think I’d share it because I’d get more support and advice; I think my first priority would be surviving. If I die, what good would my privacy do?

    As for getting an STD or some other embarrassing disease, if you are the type to go out and do those things, chances are people already expect it from you. You’re not going to shock anybody.

  9. It depends on which health issues you discuss. If you are diagnosed, as my boyfriend was, with a “very long colon” (LOL) it might make for some fun joking and wisecracks among friends as well as lead to a discussion in which he might learn about a product that helps him with digestion. But what if someone is diagnosed with something that still has a stigma? I’m not talking about Bi-Polar or Depression because it’s so common now that among most educated people, the stigma is gone. I’m talking about something like Borderline Personality Disorder or Antisocial Personality Disorder or other mental illnesses. Would you want people to know you were diagnosed with such an illness?

  10. It depends on which health issues you discuss. If you are diagnosed, as my boyfriend was, with a “very long colon” (LOL) it might make for some fun joking and wisecracks among friends as well as lead to a discussion in which he might learn about a product that helps him with digestion. But what if someone is diagnosed with something that still has a stigma? I’m not talking about Bi-Polar or Depression because it’s so common now that among most educated people, the stigma is gone. I’m talking about something like Borderline Personality Disorder or Antisocial Personality Disorder or other mental illnesses. Would you want people to know you were diagnosed with such an illness?

  11. It depends on which health issues you discuss. If you are diagnosed, as my boyfriend was, with a “very long colon” (LOL) it might make for some fun joking and wisecracks among friends as well as lead to a discussion in which he might learn about a product that helps him with digestion. But what if someone is diagnosed with something that still has a stigma? I’m not talking about Bi-Polar or Depression because it’s so common now that among most educated people, the stigma is gone. I’m talking about something like Borderline Personality Disorder or Antisocial Personality Disorder or other mental illnesses. Would you want people to know you were diagnosed with such an illness?

  12. Mrshl: The whole concept of employer-provided insurance strikes me as defective for other reasons anyway (from an economic point of view, it’s a large part of the root of America’s health insurance problems now) – and the idea of getting insurance without full disclosure … well, I think we’ve all seen plenty of examples of what happens when companies take risks they don’t fully understand over the last view months, haven’t we?

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