Compassion, Understanding and Respect are Desperately Needed While We Discuss Three Important Perspectives on Gamete & Embryo Donation
I will admit that I was a bit overwhelmed with all that transpired recently on this blog.
My original goal to discuss the potential gender discrimination existing regarding the recommended ages for gamete donation was usurped into a rather emotional discussion on merits and evils of gamete donation itself. Some of the posts were so inflammatory that I have been advised by others to wipe out all the comments so as to do no harm to others that may eventually read them. For at least now, they will remain.
So many very complex issues were discussed simultaneously; some that were reasonable while others quite unreasonable and I was not even sure where to begin. To carefully start, I believe there are three perspectives that need to be better understood involving the gamete donor, the gamete recipient and the donor-conceived offspring.
The gamete donor’s perspective
Donors may donate for a host of reasons that may include monetary reimbursement, but nearly all will donate, at some level, so that individuals who might not otherwise raise a child can do so. Many donors will already have children or may have somehow been touched by infertility though a family member, friend, loved one, or even through media stories.
Some donate blood and/or their time and others donate their money. The difference with egg and sperm donation is that they involve individuals clearly giving a part of themselves. Do donors all understand the long-term effects of the donation? Perhaps some do, but not all. Do they wonder about the children their DNA helped to create? Perhaps, yes for some. Do they regret the donation? A vocal group will say “yes” but the many gamete donors who are content, at peace and even proud of their decision are silent in the wings, not feeling the need to make their past decision to donate known. Does that mean they are embarrassed by their past decision? Perhaps a few but I suspect most will simply state it was a private decision and not for others to judge or be involved in.
Was it wrong for them to have donated eggs or sperm as some might lead us to believe? I would emphatically answer “no.”
The gamete recipient’s perspective
Most patients who accept donated eggs and sperm do so reluctantly. Single women and same-sex couples may not have many options available to them and may enter the process more willingly. For the majority using donor gametes though, they are doing so because they or their partner are unable to use their own gametes to create and raise a child. Reluctance is the common denominator in their decision.
To simply state patients seeking donor eggs and/or sperm should adopt is naive. Many patients can’t adopt for a host of reasons including age, social situations, overall costs or personal medical history. Still, adoption is a viable option for some and infertile patients go through adoption all the time.
Others patients still want to experience pregnancy and birth. Is it selfish that they want this? I do not believe it is inherently selfish to want to experience something so basic in life as reproduction. It is a drive that goes to the core of all species. The reproductive process brings them and their partner (when they exist) closer in ways that are difficult to otherwise replicate. If one condemns reproduction using donated gametes as selfish, I suppose one should condemn all reproduction as basically selfish, especially when there are existing children who could be adopted. Many patients feel that reproduction comes close to an inalienable right that is not to be interrupted or disturbed by those who disagree.
Patients that reproduce using donated gametes are not “social parents,” as some would like us to believe while trying to diminish the importance of these parents. They are parents in every sense of the word. As I have written before, being a parent has to do with being there emotionally, physically and financially for future decades to come. Being a genetic parent may only take a few quick minutes of sexual activity. I will state the genetic contribution is important, but in the scheme of things, only a very small part of the creation of a child and a family.
DNA does not a family make – it is only part of the equation.
The donor-conceived offspring’s perspective
This is where the issues of gamete donation become so complex. As I have written before, I feel that my field has not paid enough attention to the perspectives of these individuals because they were never our patients. In fact, their very existence would not be was it not for our work bringing donors and recipients together. As a result, we have an inherent responsibility to donor-conceived offspring, having assisted in their creation.
Is it better that they never should have been conceived and born, eventually experiencing all that the world has to offer? I don’t see how that could ever be thought of as true. Inherent good is created when these special individuals grace our world.
Do they have a right to know their genetic background? Perhaps they do have a moral right to know, but this frequently comes into conflict with the right of privacy of the gamete donors and recipients. Would I want to know? I think the answer is “yes.” If I were a recipient of a donated gamete, be it eggs, sperm or both, would I want to be able to make the decision about telling my donor-conceived child? I also think the answer is “yes.” So, how can we possibly reconcile these potentially conflicting rights?
We need compassion, understanding and respect.
We need to be better aware of how donor-conceived offspring feel. They will be curious about the donors. They will be interested in connecting with half-siblings, especially when they have no other siblings in the family in which they were raised. We need to consider how the donor-conceived offspring will tell their future or current partners about their genetic family. We need to understand that they will want to tell their own children about their ancestry.
We need to better understand how disclosure will affect all parties involved. There is a great deal of angst and fear regarding disclosure with the recipients fearing most that their donor-conceived child or children will not love them anymore after they find out they were a product of gamete donation or after they connect with the gamete donor. We need to help move society and religion forward so donors and recipients will not be at risk for condemnation by friends, family or retaliation from their own religion. This will take a great deal of time and patience.
We need follow-up and well-designed research examining the effects of disclosure on all parties. Only by gathering information can we can share with donors, recipients and donor-conceived offspring the likely outcomes of disclosure and open-identity. We need to move from uncertainty to knowledge and from fear to hope.
There is a great deal of disrespect abounding on the topic of gamete donation and passions are running very high as was evident in the recent comments on my blog. The perspectives have almost become religious in character with extraordinarily narrow and unbending belief systems incapable of contemplating another viewpoint. Zealots want to indoctrinate all, bringing everyone to their own perspective, which they view as the only right one. We all need to take a step back and breathe. If we all realize that we are in this together, trying to do what is best dealing with all three perspectives, then we will work through our differences and come up with alternatives that will work best for the greatest number of people. We will never please the zealots but we can try to care for the greatest number possible.
I don’t pretend to have all the answers here and I’m not even sure I have asked the right questions yet. Having worked in this field for almost 23 years though, perhaps I have a perspective that could have some value.
A central registry, where information about donors, recipients and donor-conceived offspring could be stored, is an alluring concept but important practical issues abound. Who will pay for it, what information will be stored, who will have access to the data and will the information be truly secure are all questions that need to be answered before we undertake such a venture and before we put patients and families at risk. Understanding that we have already succeeded in collecting and reporting ART data though the CDC/SART, I do feel that we might be able to successfully build a data collection system for egg, sperm and embryo donation procedures. A multi-disciplinary discussion guided by the ASRM or a yet-to-be-formed special interest group is probably the best place to start working closely with our peers in other countries who have already initiated this process. I am concerned if we do not do this voluntarily, politicians who may have a meager understanding of the true issues will force it upon us.
Creating gamete donation procedures with expanded open identity options would seem potentially to be the best of all worlds. It doesn’t mean that all donations must be open identity (i.e., it shouldn’t be mandated or legislated) for if we force this option on all, we take choice out of the hands of those involved and risk depletion of the gamete pools that are needed for so many.
I do not necessarily agree that open identity will be the answer for all of the problems but it could, most of all, benefit the donor-conceived offspring. Additional work must be done to also decide how and when the identity of the donor should be presented to the donor-conceived offspring. If we are creating an open gamete donation option for the children’s good, it is hard to argue that this information must not be released until they reach age 18 or 21. For the good of the child, having some sort of connection to the donor might indeed be best if initiated in the truly formative years and, certainly, before age 10.
Egg, sperm and embryo donation procedures are not inherently evil. They build families where they would otherwise not exist, an inherent good. We all need to better understand the three perspectives of donors, recipients and the donor-conceived offspring and, through compassion, knowledge and respect, work better together for the betterment of all the parties involved. This issue is a moving target and I beseech all those that feel so strongly on this topic to honor and listen to the opinions of others, understanding there is no right answer for everyone any more than there a single correct religion. I ask all to try to reign in all the emotion and focus this valuable energy towards discussion rather argument, compassion rather than condemnation, education rather than persuasion and respect rather than intolerance.
We have a long way to go but I feel we can get there together by understanding that each of us has much to learn from each other.
Craig R. Sweet, M.D.
P.S. For those that would like to review a somewhat scholarly summary on disclosure in embryo donation from the perspective of the embryo donor, embryo recipient and the donor-conceived offspring, I encourage you to read one of my somewhat long, but comprehensive reviews on the topic by visiting my embryo donation blog by clicking here.
Saw an interesting interview. Dr. Nicole Noyes, NYU Fertility Center, was discussing on ABC News Egg Donor reimbursement. The interview was candid and quite honest. You may view it here.
They discussed some of the outliers where egg donors were being offered up to 100K for their eggs. At NYU Fertility Center, they apparently offer 8K. Dr. Noyes acknowledged that the average reimbursement across the nation was probably closer to 4K.
As an alternative, she revealed that many women are beginning to cryopreserve (freeze) their own eggs, essentially becoming their own donors in the years ahead. a process that I think has great potential but should still be considered experimental, something that Dr. Noyes failed to mention.
I will admit, the country seems to be a little regulation happy. The answer to all things continues to be regulation in the minds of many.
Our lives are very complicated, I suspect more complicated than our parent's lives and their parent's before that. We humans continue to make our way through the maze of our lives feeling less and less in control. In times of turmoil, oil spills, a fractured economy, lost financial stability and the continual threat of terrorism, we seek stability and security. What better way to achieve this than through regulation? After all, regulation means that we don't have to even worry about that area any more and we can focus on the many other distractions in our lives.
In the real world, however, is the theme of unintended consequences. As we attempt to quell a leak in one part of the dam, another springs open thus relieving pressure. Regulation is almost always an uncontrolled experiment with the most wonderful of intentions. The problem is that it rarely achieves its lofty goals and almost always complicates the maze further.
The answer to high reimbursements to egg donors is to not offer them. The answer does not include limiting donor reimbursement as it will result in the harm of many recipients.
My field of medicine is the most regulated in all of medicine. In no other field do physicians have to display their success and failure rates for all to see. I have always wondered for those that demand this information, if they would be willing to place their professional lives out there for everyone to see. Oh, I must be confused. Regulation is for everyone else.
Don't regulate the number of embryos to transfer. Don't regulate reimbursement. Guide it all. Suggest strongly. Let the market take care of those that abuse the system. Let patients do the research and make the decisions. An odd concept which may not be entirely popular but one, I can only hope, my readers will at least contemplate.
In this world of unintended consequences, I tend to prefer to walk against the traffic that is coming for I know exactly where to look rather than strolling, when all supposedly is clear, only to be clipped by something originally unseen and unsuspected.
Comments are encouraged.
The Fertility Chase (TFC) show today covered numerous concepts including genetic testing of the embryo, embryo donation (embryo adoption), egg donation and affordable infertility coverage.
Pre-Implantation Genetic Diagnosis:
Edward L. Marut, M.D., from the The Fertility Centers of Illinois was featured in the first segment. The infertility couple, Kelly and Tom, was unable to conceive over a three years. Basic treatments were performed without success wherein they underwent In Vitro Fertilization (IVF) twice and failed. The final and successful outcome occurred when they did a third IVF procedure combining it with Pre-implantation Genetic Diagnosis (PGD). In PGD, a single cell from each of the embryos is screened for chromosomal defects such as Down’s syndrome. Nine out of the possible 24 chromosomes were examined. PGD is commonly done for genetic disease, gender selection, to transfer a single embryo, recurrent miscarriage and when there is a history of failed implantation such as this couple. Apparently only two out of twelve sampled embryos were probed as normal. A male child was eventually delivered.
As women age, the quality and quantity of their eggs decrease. In this case, quality seemed to be the issue. While not every one agrees, it is thought that PGD may decrease miscarriage rates and decrease the delivery rates of genetically abnormal offspring such as Down’s syndrome. I too have used PGD to decipherer the reason why embryos have failed to implant and will frequently find that nearly all of the embryos are indeed genetically abnormal. PGD has its strengths and weaknesses, however, in this particular instance, it may truly have saved some time and heartbreak. I thought the piece was well done.
OK, this is going to be hard to review as this was my own segment In the making for over a year, I thought Exodus Productions did a wonderful job with it. To view, please visit: http://www.vimeo.com/11762266.
Kerry (commissioning parent) and Christiana (surrogate) did an amazing job opening up their lives to the media to tell this important story.
Walt and Amy’s side of the story was that they would much rather donate their embryos than other alternatives should they never use them themselves. Amy is set to deliver very soon and I hope they use their own beautiful embryos for themselves but, in case their first child is a little hellion and they decide not to have any more (which I doubt), I would be more than happy to find a wonderful home for them.
None of this entire story would have been possible without the generosity of the couple that donated the embryos to Kerry. In addition, they did not stipulate that we couldn’t give their embryos to a single woman. This was an amazing gift from undoubtedly an amazing couple. Since these embryos came from a distant facility and not our own, I will probably never have the privilege of thanking them directly.
We will be covering the topic of embryo donation in great detail in the months to come. Right now, we have over 140 abandoned embryos and we are trying to get these designated to either personal use or embryo donation. I feel we are both patient and embryo advocates.
All kidding aside, I surely hope you enjoyed the segment as much as I did.
The third segment had many players from Long Island IVF, one of the busiest IVF facilities in the country. Reproductive Endocrinologists Dr. Daniel Kenigsbert and Steven Brenner and Embryologist Glenn Moodie, Ph.D. were the experts. Carolyn and Nicholas were a infertility couple and Donna was also a patient who sought treatment. The theme had to do with egg donation. As stated a few paragraphs above, as a woman ages, the quality and quantity of eggs decreased. At times, we also see young women who surprise us in that they seem to be very close or have actually entered menopause. When there aren’t enough healthy eggs around, an excellent option is egg donation.
I was struck by Donna’s story of four IVF cycles with one physician and another four with a different one. New York is a mandated state, which means that a certain amount of infertility has to be covered by insurance companies. I have unfortunately found that insurance coverage often leads to poor decisions. I had one patient recently that was told she was had to undergo six intra-uterine insemination procedures before doing IVF. The problem was that her Fallopian tubes were very damaged and severe pelvic adhesions were present. I recommended moving forward with adoption or IVF but IUI procedures were not on my radar screen. Doing IUI procedures was a very foolish and expensive (i.e., wasteful) step before IVF in this instance. Getting back to The Fertility Chase, Donna probably needed to move to egg or embryo donation long before the eighth IVF procedure. If none of them had been covered, she surely would have made the decision sooner and with less heartbreak.
Lastly, the egg donor stated it took weeks for her to complete the pages of needed information. Our patients have told us that it took less than 30 minutes to do it on our website (http://www.dreamababy.com/eggdonation.htm) . These are young patients and their medical histories should be pretty simple. Perhaps the donor was just being overly cautious but the TFC viewers or my readers should know that it isn’t that difficult or time consuming to do.
Cost of Infertility:
This was a great segment featuring the Gunderson Lutheran Fertility Center. Dr. Kathy Trumbull was the Reproductive Endocrinologist. Two couples were highlighted, Crystal and Larry as well as Bobbi Jo and Marty. Both of the men apparently had male-factor infertility, Crystal had polycystic ovarian syndrome and Bobbi Jo, stage I endometrioisis.
I couldn’t tell what treatments were used for which couple. Dr. Trumbull’s discussion regarding infertility patients seeing a general physician for the simple stuff but to find a Reproductive Endocrinologist when too much time passes or the issues are growing in their complexity. This is actually a statement that needed to be stated long before now so hats off to Dr. Trumbull. Infertility, especially the issues as presented by TFC, are well beyond anyone’s care besides a Reproductive Endocrinologist.
The issues of cost of infertility care will probably come up again in a future TFC program. It is a difficult issue but few areas of medicine require such a tremendous amount of physician and nursing training, continuous equipment upgrades and an extraordinary amount of time committed to our patients. Hats off to Gundersen Lutheran if they are truly able to make it more affordable in my home state of Wisconsin. I truly wish I could give it away free.
Well that is it for now. It was wonderful to be part of The Fertility Chase. Even though my show has aired, my commitment is to continue to watch each program and report back to my readers my thoughts and comments. If you agree or disagree with whatever I say, please do not be shy and leave a comment or two. In the mean time, be fertile.