Genetic Testing in France

Well we visited The Geneticist Today; a Professor Labrune, at the Hospital Beclere (somewhere on the outskirts of Paris). Actually, it is in the direction of Versailles and my husband commented on how exciting it is to be in a place where we could hop over to Versailles after a doctor’s visit.  The fact that I was a.) freezing b.) nauseous c.) trying not to pass out from the bus ride kept me from agreeing enthusiastically.

We secured this appointment in the complex yet sincere way that the French do everything.  After many emails and several intense consults with friends and family, I was convinced (not to mention a bit panicked) that it was essential that I be tested for a variety of genetic diseases (including the Jewish ones).  Apparently, even though neither my husband nor I have any history of genetic diseases of any sort in our families, this testing is common in the USA and so we were advised to pursue it.

In my normal pre-pregnancy state I tend a TAD towards the anxious side.  In my pregnant state with hormones running rampant I am pretty close to hysteria much of the time.  I searched the internet, examined pregnancy books and grilled friends and family doctors at home about the dangers of genetic illnesses.  Visions of deformed babies and childhood deaths haunted me.  Meanwhile, my Parisian GYN looked at me blankly when I mentioned that I must be tested for a variety of diseases, a.s.a.p.  She had no idea what I was asking.

True to French form, after my doc greeted my anxieties with a look of curiosity and confusion, she set off on a search through the hospital to find the answers to my questions.  After a forty-five minute tour of the hospital, consulting with a variety of physicians, she returned to her office (where I was not-so-patiently waiting) to tell me that this hospital does not in fact perform such screening (what?!  This is common practice in the USA!)  In fact, since it is a specialized concern, she would refer me to a genetics specialist who would give me an individual consult.

Frustrated that I couldn’t just have the blood test done and over with then and there (I abhor blood tests), I grudgingly took the information and waited for my appointment.  This was one of my many lessons in the French health system, which is related to the French culture in general.  The French, as a whole, feel entitled to good care.  They feel it is their right and their privilege to seek professional advice and help when and where they want it.  Because of socialized medicine, there is no hesitancy to refer to specialists.  Likewise, there is no hurry to pack many patients into a short time frame, scheduling appointments 15 minutes apart as in the USA.

In two months, I have visited my GYN four times and only once has it been for an actual exam.  The others were all consults or opportunities for me to address concerns and get information.  Two of these consults included my husband.  When I call my doctor, I actually reach her directly on the phone.  If I have anything other than a brief question, she schedules an appointment to talk in person.  Sometimes these appointments last up to an hour.  My private insurance (since I don’t qualify for social security) covers 90% of all my care.

Therefore the entire mentality is different.  French people often seek several consultations from several doctors to get different opinions.  They are not restricted by primary care referrals and 15 minute sessions.  Patients hold onto their own medical records, lab reports and x-rays.

So my husband and I were sent to see Professor Labrune, the Genetics specialist.  We had an appointment schedule for 9:30 am and I was so anxious about finding the office and arriving on time that I couldn’t sleep the night before.  Clay calmly planned out our subway route.  The next morning we left before dawn (the sun doesn’t rise until 8:30 a.m. –a real downer in the early morning) and shivered our way to the metro.  One metro and one extremely nauseating bus ride later, we found ourselves in front of what looked like a warehouse.  Armed with only the Professor’s name (and no other information), we wandered around the chain link fence, looking for the appropriate entrance. We finally found a sign directing us to Prof Labrune Porte 33.  Hesitantly, we entered the “porte’, which was actually a delivery entrance.  Following a bakery delivery truck in through the door, we found ourselves in a garage, wondering where the heck the doctor’s office was.  We wandered our way through a door (having asked a confused delivery man where to go), which led to a maze of white hallways.  By this time, I was anxious, nauseous and desperately had to use the bathroom, which luckily I found easily.  No matter that it was an employee only entrance; this was a desperate situation (besides, I figured “hey I’m a pregnant lady! Back off!”), I could hear my husband asking for directions in the hallway.  It turns out that we had come in through the kitchen entrance and were now in the back of the hospital cafeteria.  Clearly not where Prof Labrune must be waiting.

We stumbled our way through an ER section, past a row of empty gurneys and up a flight of stairs leading to the information desk.  The very friendly woman behind the desk directed us around the corner to pediatrics, where we sat, among an assortment of toddlers and parents, waiting to be seen.  My husband beamed at the darling children; I tried to keep from throwing up or passing out.

“Look” I turned to him, “I’m not big on blood tests or hospitals and my French is headed out the window so if you could be the proactive team member here, that would be great.  I mean, how the hell do I ask about being a carrier for Taysachs disease in French?”

I was concerned that I would be confronted with a grumpy Professor, who was wondering why we were wasting his time. I was worried that I would have to convince him to authorize the screenings for us (because in the USA, everything is about getting “authorization”) and, that I would have to discuss genetics, not my forte… in French, also not my forte.

I couldn’t have been more off base.  The Professor was a charming, gentle, quiet and patient man who first took our family history.  Then he patiently explained the various diseases we were concerned about (in too much detail), their origins (not really necessary) and the percentage of risk.  I couldn’t believe that we were having this conversation in French! And I actually understood it! Not that I “understood” it. I understood the words. And the context. I was just reveling in my linguistic breakthrough when he pulled out a piece of paper and started to diagram the cell mutation related to one of the diseases.  (At this point I had to admit defeat.  Not due to language barriers but due to my own science learning disability.  Once someone starts talking cells and DNA, I start to lose it).  Not wanting to be rude (he was enamored with his description of some particular cell growth), I steered the conversation back to our family trees and what tests would be appropriate for us.

This led to the obligatory piece of any professional consult in France: the paperwork.  In order to be tested we must solemnly sign the agreement to show that we fully understood the solemn oath of his professional boundaries (confidentiality, professional courtesy, professional boundaries and a myriad of other issues which seemed to pertain mainly to his limitations as a mortal and not as an agent of God). Then there would be the second set of papers authorizing release of this information to my doctor, which could only be sanctioned with my personal authority.  Otherwise, our test results would remain in the secrecy of Professor Labrune.  He took this very seriously.  An oath of privacy.

After we satisfactorily signed and sanctioned the paperwork, we were led next door to the lab technician to have our blood drawn.  Just the thought of this process made me queasy, but my husband, who is quite an experienced blood donor, asserted that this was one of the most professional outfits he had ever seen.  Not only were the technician (and her assistant) extremely friendly and caring, they treated us like dear friends, expressing extreme concern over my obvious distaste for the process.  Offers of juice, attempts to make jokes, were all lost on me as I did my best to disassociate from the process.  They even recommended an anesthetic patch that can be purchased in the pharmacy, to numb the area to be pricked.

I stumbled out of the technician’s office (desperate to get away from any sign of B-L-O-O-D) and we returned to the information desk to settle our bill.  Having been quoted a fee of $1000 to have this exact procedure (consult and tests) done in Boston, we were shocked to be asked to pay a total of 32.10 euros.  I must have heard wrong.  She must have meant 300 euros and in my light -headed state I was getting the numbers wrong.  Nope.  23 euros for the consult with the Professor and 4 euros for our tests, plus a couple of euros miscellaneous.  “You do have insurance that will reimburse you?” she asked me with a concerned look.

I am overwhelmed by the quality of service, professionalism and State of the Art care we have experienced here. I’m sure some of it is luck.  But boy have we been lucky.

Professor Labrune will contact us within three weeks to discuss the results.

Tamar G. McLachlan, MSW
www.CoachingInMotion.com