After dangling the promise of a 'life saving' Facebook announcement, earlier this week we learned that the behemoth social media site is now offering a place on each person's timeline to show their organ donor status. The announcement was met with great kudos from various media outlets as well as reportedly increased interest in organ donor inquiries and enrollments. At first glance, it looks like a benevolent move - but further thought leaves me bothered and disturbed.
First off, I wonder why we haven't heard a loud-resounding roar of objection from the privacy advocates. Though I don't expect anybody to object to the efforts to raise organ donor awareness, the Health and Wellness area of a user's timeline encourages people to divulge health information of a much more private nature. The additional sections that are available for completion are:
- Overcame an Illness
- Quit a Habit
- New Eating Habits
- Weight Loss
- Glasses, Contacts, Other
- Broken Bone
- Other Life Event
Completing any one of these sections moves Facebook's actions far from the realm of benevolence. To locate the section go to your profile page, click on the Life Event listed in the same box as Status, Photo, and Place. Clicking on the Health & Wellness tab will open to the individual topics listed above.
Health care privacy is a very serious issue. All medical providers and insurers are bound by law to retain indvidual's health information in a secure manner allowing access to the protected health information (PHI) only upon the patient's informed consent to release it or for treatment, payment and operations (TPO). It's all laid out in the HIPAA (Health Insurance Portability & Accountability Act) and a myriad of state laws.
Why is patient privacy protection so important? Very simply, people will be comfortable seeking treatment when they are confident their information will not be used maliciously against them. With the high cost of employer-sponsored health care plans these days, consider how difficult it could be to get a job if you have a chronic disease like diabetes. Do you suppose a mortgage company may find health information useful in determining it's risk in underwriting a 30 year loan if you have a history of heart disease?
At this time there is no Federal or State law that extends patient privacy protections to social media sites - particularly when the patient posts the information themselves. Facebook is under no obligation to protect the information and already offers only dubious levels of privacy on non-sensitive matters. The possibilities of what Facebook and other parties could do with the information is both staggering and disturbing. Join me in objection by refusing to complete any part of the Health and Wellness section.
As for the organ donor awareness initiative - that's all it is. A marketing effort to raise awareness, and while sharing your donor status on your timeline might be good for awareness, it in itself will do nothing to deliver on Facebook's supposed mission to save lives.
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