An open letter to the medical community.

I’ve been following the DTC genomics and personalized medicine discussions for years now. I’ve learned that there are diverse and well-reasoned arguments by capable spokepeople proposing many possible futures for the doctor-patient relationship. Discussions during this weekend’s BIL:PIL conference and a recent exchange with Dr. Steven Murphy, with whom I’ve disagreed, occasionally vigorously, for years prompted me to put down my thoughts here. Actual meeting notes will follow in a separate post.

I believe, as does pretty much everyone, that medicine is on the cusp of great changes and that personalized medicine holds great promise. I believe that an informed patient is an empowered patient, and ultimately a healthier one. Every good doctor should want this, and every below-average doctor should pray this day never comes.

Email transcript follows:

Where Dr. Murphy and I differ is in the regulation of medical tests, diagnostic or otherwise. Why should diagnosis (the test + the interpretation thereof, sans recommendations) be considered to be treatment? Certainly insurance companies shouldn’t pay for quack treatments, but getting a test, even having the result of the test explained to you, isn’t a treatment for anything.

The laws were written back when people didn’t necessarily want to see the raw data because they wouldn’t have known what to do with it if they had it, and the tests were inaccurate enough that they didn’t mean much on their own anyways. That was a good reason to make doctors the gatekeepers, but that’s all changed now.

People neither want nor need a gatekeeper now. It’s not about self-treatment, it’s about empowerment. Patients should be empowered to understand what’s going on with their disease or condition or lack thereof, and they should be empowered to ask better questions. Every good doctor wants their patients to be empowered like this. The only thing total release of all information and interpretive notes, medical or otherwise, would do is reveal which doctors are the good ones who stay up-to-date and which are the slackers.

Patients might get together and discuss their tests and decide as a group that they’re going to undertake some quack treatment, but they might also get together and discuss their tests, bring their concerns to a good doctor, and he might realize that “Gee, maybe we should tell myeloma patients undergoing treatment with Zometa to avoid invasive procedures on their jaw.”

There’s upside and downside risks to these kind of patient rights, but Gilles Frydman at ACOR is an example of how to do this in a way to minimize the downsides while maximizing the upsides. They’ve published a study of how this works here. In short, an informed patient is a healthier patient when they’ve got a community like that. Take a look at what they’ve done at ACOR and you might realize the assumed or historical risks of self-treatment pale in comparison to the benefits that tens of thousands of patients are seeing today.

Things have changed and the medical establishment needs to get ahead of the curve on this one, or they risk losing the trust and respect they’ve been afforded for so long. In fact, it’s this loss of trust that has provided an opportunity for the dangerous quack treatments you see today among autistic parents, for example.

Please, in your advocacy of personalized medicine, abandon the paternalistic model. Seek to empower patients and regain the trust our profession has deserved for so long. Don’t let mistrust and arrogance leads patients away into the arms of the quacks.

Sincerely Yours,

William Gunn

Further reading:
In Iran and in the US Health Care System, Citizens’ Access to Computable Data Frees Everything!
It’s my genome: should researchers be obliged to return genetic data to research participants?
A Mom Brokers Treatment for Her Twins’ Fatal Illness
Participatory Medicine

About Mr. Gunn

Science, Scholarly Communication, and Mendeley

03. November 2009 by Mr. Gunn
Categories: Uncategorized | 17 comments

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