I don’t think this is really fair, Fred, and you’re conflating things here. Google being able to datamine my health records is not the same as their being publicly posted. And as I noted, I’m perfectly well aware that my position on this is not something that most people are comfortable with, and I wouldn’t suggest that anyone uncomfortable with it, utilize it. My own personal perspective is as someone who actually has a lot different data in my medical records.

“Let’s think about this in the long view. Federal laws protect our health records because they are amongst our most personal disclosures. Google is offering us, with a single click of a button, the ability to essentially opt out of this protective system.”

I’m a lot more concerned about – and have I think more well-founded suspicions of bad faith on the part of – my insurance company having access to my medical history. Unfortunately I don’t have a lot of choice there. But however much federal law protects the confidentiality of records, it doesn’t protect me from my insurer, who in the current system is basically concerned with spending a lot of money figuring out how to deny me coverage or drop me, and keeping me as much in the dark as possible about their machinations. I have basically zero confidence that they’re living up to the spirit if not the letter of the law in terms of what they’re allowed to do with my information. If Google can add an element of personal data management capabilities to my health information records – can give me greater data portability and control over my own records (which I really don’t feel I have, now), then I, personally, am okay with the tradeoff. It’s fine to disagree, but calling that view classist is a little much.

“What I’m calling for is a higher standard of ethics, one appropriate to the sanctity of the data. Google can certainly provide a repository – hell, I’ll pay 150 a year for that. But don’t mine it, keep it encrypted, and develop a comprehensive set of rights for the data including my right to revoke Google’s ownership at any time.”

That sounds good to me, too. We won’t get there without federal legislation (which I think on this issue is perfectly possible and reasonable as a digital-information extension of the “Patient’s Bill of Rights.”)

No question that we need that as an option; if it is opt-in, I doubt it will have any significant success, it will justify the setting up of a anonymous filter for medical appropriateness.

Fred, I know you can do better then that antropomorphism: Google is a computer-based company, so your questions properly expressed are:
* Will Google employees have reading access to Health files at an individual level? At almost non-identifiable level? Could Google give this access to Official epidemiology experts?
* Will Google ad-targetting service use Health related information? Directly, or with anonymized statistical association?
* Who will have Kill Switches & Keys for that information? Will it be intuitive for the users?

Patients need to understand the sharing principles, so this is a challenge Google seems to be the only instituion able to solve. Whether the for-profit-through-ads should control it is an issue, not fully independent, but that can easily be made distinct by a courageous President who decides to say: it’s a great tool, but not even you want it in a corporation’s hand, and nationalise it (or give it to whatever form of institute US citizens agree they can trust).

The key personal information question certainly is the one you raise: if Google keeps the control of this thing because Companies are the only thing all Americans really trust, they should not have a full access to it. I would feel OK with a blind system that cannot be human-read, but that however can say: this medical condition is associated with a great click-through for this ad; a (college of) medical expert(s) on the condition is asked (through an anonymous process if need be) if this is medically a good thing. I’d love to have Tabacco addition treatment benefit from Google great Bayesian machine; I’d have concern with obese people viewing nothing but junk-food ads. . .

Let’s think about this in the long view. Federal laws protect our health records because they are amongst our most personal disclosures. Google is offering us, with a single click of a button, the ability to essentially opt out of this protective system.

And what happens if I do opt out, and send my records to Google? Can I ever take my records back? Do my records disassociate from my psychographic profile in the system if I do that? Hopefully we’ve all got many more years, and the idea of Google possessing our health records going forward – what happens when privacy norms around health records change?

I fully agree with the (impossible to disagree with) argument that the health records systems are broken. But the answer is not this, especially when encrypted records are a fairly trivial next step.

No, I’m not against progress. What I’m calling for is a higher standard of ethics, one appropriate to the sanctity of the data. Google can certainly provide a repository – hell, I’ll pay 150 a year for that. But don’t mine it, keep it encrypted, and develop a comprehensive set of rights for the data including my right to revoke Google’s ownership at any time. You think Facebook has got you locked in?

As an aside, I’m going to declare the “I don’t care, Google can see my data” classist. If you get “high” diseases, fine, you’re comfortable with people knowing your conditions. But for those who have been on the other side of our health care crisis, those people who are marginalized and get “low” diseases – these are undervoiced but equally important perspectives.