The Internet-age old question: how much to share online? It’s an issue we all grapple with, whether we blog or not. Do we share our newborn’s name on Facebook? What about the pictures from last night’s fraternity party? Or vent about work?

Occasionally, you read about online sharing resulting in real-life consequences: university sanctions perhaps, or a lost job.

In the rare disease community, the stakes are high. Every time I write, I consider the possible repercussions…how my community may view my family, the possible impact on M and J now and in the future, whether future employers will use my diagnosis against me because of what’s online (it’s happened to me before), and, especially once we started the process, how this blog could affect our ability to adopt. I mean, I have zero intention of hiding my diagnosis from any parents who would consider us as a family for their baby, but I’d like the opportunity to provide context, which someone finding my blog first wouldn’t necessarily have.

Why do I and so many others with rare disorders blog? I believe our writings fill a gap of patient experiences that foundations (when they even exist) and doctors can not. Blogs and patient-led forums are significant educators, where we learn the best and worst case scenarios, where we get to feel heard, where others’ experiences shape our stories. Patient writing is a necessity.

That is why I’ve been on the fence about sharing the following story. However, it’s the worst case scenarios – the dissections during pregnancy, the post-surgery complications – that can bring about change. It’s in that spirit that I share this.

Late one night this spring, I was checking the stats on my adoption blog when I noticed that someone had visited the website via a presentation on Marfan syndrome. That link revealed a nauseating discovery: a presentation about J and me, using full names and family photos taken from the adoption blog, as well as detailed medical information gleaned from this website, all compiled into a handful of slides. Someone had literally combed through 5+ years and hundreds of pages of my writing, then continued to other websites (including my adoption blog, which, for obvious reasons, doesn’t mention Marfan at all) in order to compile a great deal of personal information.

Imagine my greater shock when I learned this presentation came from a well-known, respected university and was, in fact, a sanctioned assignment. Yes: the professor instructed students to NOT ask me permission.

I was successful at getting the presentation of my son and me offline quickly. My correspondence/conversations with the professor and a staff member was not as fruitful as I’d hoped though. Quite frankly, I’d found the entire situation to be unethical. While yes, I publish information about my family and our stories, and it’s legal to utilize that information, that doesn’t mean that it’s right to 1) condense that information into an easily searchable format, 2) go to our adoption blog, which has nothing to do with Marfan, for the purpose of obtaining my last name and my son’s name (which I clearly take pains to conceal), 3) take family photos, especially ones from our adoption blog, and 4) publish all of this on your own website.

No medical doctor would use his or her patients’ names in a grand round presentation. Identifying information is not necessary to share a medical story. It also shows a complete disregard for patients to refuse to ask permission before using their stories for your academic gain, even if you believe what you’re doing may someday help other patients.

I was told that this was essentially my fault…that if I didn’t want my work used in this way, I shouldn’t have published anything on the Internet. I was told that this was all for the greater good, as though I should be grateful somehow. I was told it would be unethical for students to contact me for permission, as they hadn’t been HIPAA trained (while simultaneously being reminded HIPAA rules did not apply to me, so the university had done nothing illegal).

When I hung up the phone, I was shaking from anger. Here was an organization claiming to want to help people with rare illnesses, seemingly refusing to understand the hurt they’d caused. I’ll add though that, with some help, we’ve been successful in getting the program to agree to de-identify information from here on out.

So for those of you who are medical professionals, please learn from this university’s error. There are a wealth of patient blogs online…ask before you take from them, or at least de-identify the information you use. Respect the online communities we have built for ourselves. Help us to keep them safe places by not exploiting them. Many of us want to help you with research, want to help you become better doctors, nurses, and genetic counselors, but you need to see us as people and not the means for a paper or grant money. Do more than what is legal: do what is ethical.

For those of you who blog, don’t let things like this silence your voice. Do be cautious in what you publish. Make sure to check your stats regularly so you know where your work is being used and how people are finding you. Google yourself from time to time, and your kids too. If I hadn’t, I never would have caught this, and that presentation would still be out there, potentially affecting our opportunities down the road.

I’m still frustrated by the way things went down, but I won’t be silenced. There’s still too much work to be done.