Saturday, November 03, 2012

Ten Year Kidney Donor Data Causes a Scandal


Recently, I posted information from the Swiss Living Donor Registry on the health and well-being of kidney donors ten years post-donation. Well, it seems that the researchers at the registry, who owe their paychecks and employment to the Swiss government, are more than a little ticked off about their numbers being made public.
As I understand the situation, Dr. Thiel (of the Swiss LD Registry) gave a bunch of data to the german tv show REPORT MAINZ in April 2011 for a July 2011 broadcast focused on living kidney donor chronic fatigue (remember that?).
The Swiss Federal Office of Public Health (BAG) released their annual report in December 2011*, which contained data from the Swiss Living Donor Registry. Problem is: the data reported to BAG didn't match the data given to REPORT MAINZ by Thiel some months earlier. BAG omitted the statistics on long-term fatigue, everything on cardiovascular events and disease, and minimized the incidence of hypertension.

I did mention the Swiss government commissioned the data collection on living donors, right? That the Swiss government is funding the registry and its subsequent product, yes?

Given the situation, the folks at REPORT MAINZ did what any good investigative reporters would do - they released the data in a July 2012 broadcast, specifically the information on hypertension, cardiovascular events, and chronic kidney disease stage 3/4.
The remaining Swiss living donor registry doctors, when confronted with this, reacted like any person caught in subterfuge would react - they protested, yelled, stomped their feet, and when they didn't work, they sued.

First they claimed that releasing the data was a violation of their copyright. (WTF? It's TAXPAYER FUNDED RESEARCH).
Then Nolte, one of the Swiss LD Registry researchers, said that publicizing the data jeopardized her future publications (even though she presented the fatigue data in 2009).
When that didn't work, Steiger, who took the helm after Thiel's death, demanded a correction, stating that the incidence of cardiovascular disease among living kidney donors wasn't an issue because it was equal to that in the general population. (Except that living kidney donors are supposed to be HEALTHIER than the general population, so if they're experiencing cardiovascular events and disease at the same rate, and reduced kidney function is associated with a higher risk of CV events and disease, removing a living donor's kidney increased their incidence of cardiovascular disease!).

And now a lawyer has issued a Cease and Desist letter, and threats are flying at the journalists.

By all accounts, Thiel was a caring and respected doctor and researcher. It's not likely he would knowingly give false information to a reporter, or participate in concealing truthful data from the Swiss govt or public. If the remaining researchers can prove the data Thiel gave to REPORT MAINZ in mid-2011 is false, or at least, way over-exaggerated, why don't they just do it? Why all the weird, side-stepping threats?

I don't have any answer for any of that, but I thought the controversy important enough for you to know. As more rolls in, I'll keep you updated.


*Thiel died in January 2012, so it's likely he had very little to do with the numbers given to BAG for publication.

Abecassis, M., Fisher, R., Olthoff, K., Freise, C., Rodrigo, D., Samstein, B., Kam, I., Merion, R., & , . (2012). Complications of Living Donor Hepatic Lobectomy-A Comprehensive Report American Journal of Transplantation, 12 (5), 1208-1217 DOI: 10.1111/j.1600-6143.2011.03972.x