Privacy Makes Me Sick!

Privacy Makes Me Sick!
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Who are we kidding? What are we hiding?

OK, sure, it is bad when somebody steals enough personal information to open a fake credit card or empty a bank account. But really, most of us are pretty public about our names and addresses and what we care about on social media. Especially those of us who have a rare disorder. Social media is the way rare patients connect! We needles in haystacks find each other on Twitter and Facebook and Instagram.

But everybody seems so worried about the safety of their data, especially their health data. The Health Insurance Portability and Accountability Act (HIPAA) protects Americans’ medical information, protects us from being rejected, exploited, victimized. But it also keeps doctors from talking to each other in the hallways. HIPAA throws ice on the kinds of conversations that spur discoveries. HIPAA keeps the scientist away from the patient’s genome, makes the surgeon hesitate to talk to the therapist. HIPAA is a border wall.

The way I understand it, HIPAA was created for good reason in the late 1990s, when most doctors kept thick paper charts and hospitals paid for warehouses full of boxes of X-rays and lab reports. HIPAA was conceived in order to promote electronic health records, and allow patients to take their medical records from one doctor to another, and take their health insurance from one job to another. This notion of the portability of medical records was brilliant, though futuristic, and is just now beginning to come to fruition 25 years later. The idea that a patient’s medical records could be moved on a chip or emailed from place to place created all sorts of worries about people’s private histories being exposed. And yes, there was plenty of health prejudice that could cause harm. There still is. Stigma surrounding reproductive events or chronic health conditions remains a problem today.

Thankfully, we now know where babies and HIV come from. And there are now laws which prevent insurers from rejecting patients due to pre-existing conditions, so patients no longer have to find a way to hide diagnoses that scare an employer, or an insurer, away. It is always possible that the legal protection of pre-existing conditions could disappear, and leave patients exposed and vulnerable.

OK, those fears are real.

But my son wears his pre-existing condition on his sleeve. He has Angelman syndrome, a genetic brain disorder that has robbed him of speech and smooth movements and easy social behavior. There is no hiding his medical history. In fact, airing his genome, publishing his symptoms, publicizing his molecular pathways, is the fastest and clearest way to a cure.

I want doctors to talk about my son. In the hallway. At the grocery store. At the golf course or bar or gym or wherever doctors run into each other. I want medical students to be inspired to learn about Angelman syndrome because they can put a name to the face of this disorder. I want scientists to have easy access to anything in his medical record that could give them a clue to a new treatment. I want all of these people to share notes and tips and successes and mistakes with each other and with drug companies and clinical trials and other families. With anybody who could possibly help, or benefit, from knowledge about this disease.

I don’t want HIPAA to get in the way of treating and curing my son, adding layers of paperwork and permissions that slow down progress and cost money. I’m sick of HIPAA. I have renounced my HIPAA rights, and renounced my son’s HIPAA rights, many times, in writing, with signatures, but the renunciation doesn’t stick — institutions are wary of this sort of freedom of information.

The solution is to get rid of HIPAA and go back to the Wild West days before 1996, but that won’t happen and there might be good reasons for that. The stopgap solution is to give my son (and me, his conservator) complete control over all his medical records, so that these records can truly be portable and shareable with a couple of clicks. And all of these medical records need to be linked to a unique number so that any of my son’s records or research charts from the dozens of studies and hundreds of therapy visits, consults, EEGs, X-rays, and lab tests can be connected together.

Dots. We need to connect them, but privacy gets in the way of drawing lines between dots for people with rare diseases.

Privacy makes me sick, or at least it makes my son sick.

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Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.

Terry Jo Bichell is a neuroscientist researching biomarkers and outcome measures for severe rare genetic neurodevelopmental disorders and is the mother of an adult son with Angelman syndrome.
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Terry Jo Bichell is a neuroscientist researching biomarkers and outcome measures for severe rare genetic neurodevelopmental disorders and is the mother of an adult son with Angelman syndrome.

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