Thinking outside of common subjects that my rare disease communities are hesitant to discuss (for fear of coming across as morbid or negative), I was thinking of innovations we should be celebrating, but are hesitant to because they may run afoul of our friends & family’s personal ethics & would cause several heated personal & social media discussions over the ethics involved.

At the top of my list of gorillas crowding the discussion room is the topic of the use of fetal tissue in medical research.  Many people on the opposite side of the argument are correct that potentially stem cells could come from other sources or solely from adults to solve this dilemma.  I would argue since it is available, why not use it instead of letting it go to waste?

The popular stereotypical argument against it is that these cells are being bought & sold.  The fact remains that is not (least not in the U.S.), & that most often researchers have to have consent to use the tissue much like many forms of donation. The government also prohibits the sale & profit off of such tissue.  Without fetal research, advancements would come at a much slower pace & much of the tissue would just be discarded in a waste bin instead of being used to actively advance understanding into several devastating diseases.

I’m not asking people to change their stance or their position, just give the opposite side of the coin some food for thought.

This research is paving the way to inroads in regeneration of organ cells & tissue, which may lead to further transplant advances in which the costly and precarious mix of immunosuppressant drugs could be lessened or eventually possibly avoided. Along with the potential of creating new organs with one’s own stem cells over time.  I don’t think an advance akin to the one highlighted here, would be possible without first tinkering with tissue outside of one’s own, however.

In accordance with that, is the inevitable discussion of animal testing in medical research is the second gorilla that sits at the front of the room pounding its chest to be noticed.

The Foundation for Biomedical Research (FBR) has several short but interesting videos of the contributions that animals play in research & medication development.

While I agree that the test animals should be treated as humanely as possible during those tests,  I have to say there is a high likelihood that I would not be as healthy as I am without animal testing (in fact, I know I wouldn’t be here without it & that’s a fact, not me being dramatic).  The development of reliable animal models has accelerated advances in both tuberous sclerosis complex (TSC) and lymphangioleiomyomatosis (LAM) research much more quickly than would be possible without it. I’m talking both advances in basic science but also clinical research.

In addition, transplant & surgical advancements are made from the use of animal organs & tissue, which in turn lead to more advances in transplantation & surgery as a whole.  One such advance highlighted here may lead to advances in transplant that may eliminate or drasticly reduce the number one enemy to transplantation, rejection.   Some approaches are already in human trial phase or close to it as highlighted here. Once proven in one organ with the highest outcomes, it eventually leads to testing in other organs to see if the success translates successfully.

If you even just google out of curiosity the phrase, “kidney transplant clinical trial without immunosuppressants” one will see dozens of hits with exciting innovations.  None of these advances would be possible without animal or fetal tissue research.  These are life-saving & life-changing advances.  Keep in mind that the first kidney transplants were done in 1954, so transplantation as medicine is still quite young.

With so many factors in play when it comes to the organ donation shortage, we must close the gap for people somehow. Depending on the organ, it’s not as simple as finding a family match or using a living donor. What if you can’t use either, or what if neither are a match for you in an organ who can? You are left to wait on the list.

Too many die waiting for an organ, which also poses an ethical dilemma when we stop & think about it.  There are so many misconceptions over the listing process & the process of donation period.  That’s a subject for another post, but those misconceptions are important to consider because they are often an immediate hinderance to expanding the donor pool.

Also when we examine other international approaches, there’s a strong temptation to move to compensation for donation, which opens up the doorway for yet another gorilla to enter the room & vie for attention.  Thanks to a friend who is a reporter, I was made aware of these two NY times pieces: “It’s Time to Compensate Kidney Donors” & “Need a Kidney? Not Iranian? You’ll Wait“, in which the author makes the argument of compensating donors like Iran does.

Art Caplan, a biotheticist I know from my days at Medscape, is not afraid to address these elephants or others in medicine (or issues outside of it). I don’t always agree with what he says but usually on the rare occasion I don’t, he gives a reasoned argument to the opposite side that’s worth considering. (He was ahead of the curve on this subject. That link is from 2008 Hastings Report before the allocation system changed. Still arguments can be made that the changes didn’t “fix” all these major concerns).

I don’t expect people to change their minds off of this post. I know people who have had transplants whose personal ethics don’t agree with these methods of gaining advancement, & I can respect that.  I just ask for equal weight & consideration for the other side for those of us who may see things differently.

The gorillas need to be fed & cared for by both sides. They are right there in front of the both of us begging to be noticed & fed. We can argue bitterly while they starve, or figure out a way to respectfully care for them without compromising our own personal beliefs or those of family & friends who may disagree.

I agree that’s a tall order, & the approach is up to the individual. But a simple acknowledgement of the appreciation of science advancements made without harsh names, false assumptions of moral, religious, or other principles for standing on one side versus the other, or the arrogance that people who are in favor of these approaches somehow devalue human or animal lives & welfare would be a step in the right direction.  I agree to disagree with those on the opposite side but I don’t go around making arrogant presumptions about their character based on whether they are for or against a certain approach.   I feel that’s front & center of where many of the starts of these discussions fail to take off successfully.  The gorillas can be fed without it coming to fisticuffs between their caretakers.