Archive for the ‘legal’ Category
The Embryo Bank Dilemma: Reviewing the Issues, Historical Perspectives and Offering Potential Solutions
Craig R. Sweet, M.D
Practice and Medical Director
Embryo Donation International
In my last blog, “Why Creating ‘McEmbryos’ is Just Plain Wrong,” I wrote about my concerns regarding the creation of an embryo bank at a California clinic. In this follow-up segment, I want to re-state the issues, discuss the past history of embryo banking in the U.S., provide a list of recently written thoughtful blogs on the topic, offer possible solutions to the dilemma and discuss where we should go from here.
A “Reader’s Digest” version
California Conceptions (CC), as outlined in Alan Zarembo’s L.A. Times article apparently combined donor eggs with donor sperm and divided the resulting embryos among a number of embryo recipients. This process is commonly called a “split or shared donor/donor cycle” but was called “embryo donation” by CC. Any embryos remaining, after the recipients received their allotment, would be cryopreserved and owned by CC.
The road was paved with good intentions
I feel that CC was really trying to offer a cost-affective alternative for patients and that its true intent was to keep the size of its embryo bank as small as possible. Even with good intentions, however, it is quite likely that the embryo bank will grow. In addition, to sanction the creation of a small embryo bank will almost certainly result in the creation of larger embryo banks across the country. These banked embryos for commercial use are what I called “McEmbryos.” There also needs to be a clear distinction between embryo banking for commercial use and the process of banking one’s own embryos (i.e., collecting through multiple IVF retrievals) to be used by individuals to build their families in the future.
I still have three main concerns:
- I do not feel that embryo banks are appropriate and could result in a plethora of unintended consequences.
- I feel that corporations, businesses or physician practices should not own embryos.
- Lastly, the process of a “split or shared donor/donor cycle” should be called “embryo creation” or, at the very least, not called embryo donation.
This has happened before
An article by Gina Kolata in the New York Times in 1997 revealed that “ready-made embryos” were already being made for “adoption.” Columbia-Presbyterian and Reproductive Biology Associates were named in the article as providing “premade” embryos to patients. According to the article, most of the embryos were created when donor egg recipients backed out of the process, but the egg donors still underwent the egg retrieval; their subsequent retrieved donor oocytes were combined with donor sperm. Lori B. Andrews, a professor of law at Chicago-Kent College of Law, was quoted as having concerns about the supermarket approach to embryos while the clinicians thought it wasteful to not retrieve and fertilize the donor oocytes if the egg donors were ready for the retrieval.
In 2007, Center for Genetics and Society Senior Fellow and UC Hastings Law Professor Osagie Obasogie wrote an op-ed for the Boston Globe about a Texas center that had created an embryo bank. He was concerned about the “Wal-Martization” of human embryos, a phrase similar to my “McEmbryos.”
In November of 2012, in response to the N.Y. Times article, Jessica Cussins of the Center for Genetics and Society wrote an excellent blog on the topic, also following-up on the 2007 article by Professor Obasogie. The Texas center was eventually closed and was the subject of an FDA investigation, which eventually found that the creation of an embryo bank did not fall under FDA jurisdiction. John Robertson, Esq., wrote an excellent commentary on the topic in the Bioethics Forum in that same year.
Embryo banks have come and gone, garnering media attention and criticism and I believe it is finally time to set some ethical standards of care about them.
How New York decided to handle the embryo bank issue
Almost five years ago, the state of New York issued regulations for tissue banks and nontransplant anatomic banks, addressing the potential of creating embryo banks:
Embryos shall not be created for donation by fertilizing donor oocytes with donor semen, except at the request of a specific patient who intends to use such embryos for her own treatment. [NYS 52-8.7(h)]
Embryos were not to be created to store in embryo banks but only created at the behest of a specific patient and subsequently owned by that patient. Simply modifying the statement above to include “… such embryos for his/her own treatment,” would address the issue adequately, with the sentence potentially used by various organizations as they hopefully set ethical standards of care.
Potential consequences to the creation of an embryo bank
I have been called an alarmist by some for bringing up what I feel are the following potential dangers of having embryos banks in the U.S:
- If a small embryo bank is allowed to flourish, then large embryo banks will most certainly follow.
- Poorly designed and reactive legislation may be created on the state or national level as there may be further calls to regulate what are perceived to be “unregulated IVF facilities.”
- “Personhood” advocates may become further emboldened to win personhood for the embryos to protect them from becoming “McEmbryos.”
I don’t think these unintended consequences are that farfetched and need to be considered carefully should embryo banks continue unchecked.
My reluctant decision to come forward
About the last thing I wanted to do was to comment on another reproductive endocrine practice comprised of caring staff members dedicated to the care of their patients. I have been criticized for taking such a stand and accused of doing this purely for competitive reasons. In reality, I have been working with the American Society for Reproductive Medicine’s (ASRM) and the Society for Assisted Reproductive Technologies, (SART) since October of 2011, trying to elicit a set of guidelines prior to the writing of my blog. I far preferred to stay out of the limelight and let the “powers-that-be” decide what should be done next. When the L.A. Times article was published, it de-emphasized the ethical issues and potential unintended consequences of the CC embryo banking practice, so I felt I had no choice but to bring the topic up front and center.
Others responded to the discussion
Several other infertility professionals discussed the ethical issue in articles or blogs in the weeks following the L.A. Times piece. Excluding those that simply summarized the situation, I listed below what I think are some of the better blogs:
Supporting embryo banking
- Marni Soupcoff, Esq., “Marni Soupcoff on the sale of fertilized embryos: How much for the blastocyst in the window?”
Neutral to embryo banking
- Julie Shapiro, Esq., “Custom Made or Off The Rack?”
- Carole C. Wegner, Ph.D., “Embryos for Donation: Where are the ethical boundaries?“
- Elizabeth Swire Falker, Esq., “The Bizarre World of Embryo Banking. Where My Motherhood and Morality Meet”
Against embryo banking
- Andrew Vorzimer, Esq., “Get Pregnant With Built On Spec Embryos Or Get Your Money Back!”
- Jessica Cussins, B.A., “Embryos for Sale: ‘When You Want Them, How You Want Them, or Your Money Back”
- Sara R. Cohen, LL.B., “It’s not about the Money: Why we are So Concerned about a California IVF Clinic’s Anonymous Embryo Program”
- Mikki Morrissette, “Creating Embryos To Sell“
My thanks to all of the authors for taking the time to discuss the issue in an open forum.
Proposed remedies to the current dilemma
From the beginning, I have been offering remedies to the embryo bank dilemma. Although far be it from me to tell CC how to run its business, these are a few ideas I had to offer:
Only patients should own embryos-
No organization, corporation or physician practice should own embryos except in the most extreme circumstances, such as embryo abandonment. With embryo donation, it is most appropriate that the donor facility simply holds the embryos, with the donors still being able to request the return of their embryos, up to the point of transfer into the recipients, should a catastrophic occurrence take place, Attorneys refer to this as being a guardian, a conservator, or a temporary holder of goods. When presenting at the American Bar Association Family Law Section Spring conference in April of 2012, many of the attorneys there strongly supported the concept of conservatorship of the donated embryos over facility ownership.
If the embryos are returned to the donor, it seems appropriate to ask the donors to reimburse the embryo donation facility for all reasonable fees expended in originally obtaining the donated embryos and returning them to the donors. We have been running our embryo donation program this way for over 12 years and we encourage others to do the same.
Excess cryopreserved embryos could be owned by patients-
As best as I can surmise for CC, their business model is to recruit a number of embryo recipients and then transfer 1-2 donor/donor embryos into each recipient. I suggest that any remaining embryos be owned by one or more of the recipients and the entire cycle should not move forward until at least one patient agrees to take the extra cryopreserved embryos, should any exist. Extra charges could be levied to those that secure the remaining embryos. In this way, no embryos remain to create an embryo bank and the CC business model remains essentially intact.
Renaming the process-
The combination of donor sperm with donor eggs and then calling them donated embryos does not fit with the ASRM definition of embryo donation (Ethics Committee of the ASRM, 2009). Embryo creation is a far better term or “shared or split donor/donor cycle” is perhaps even more appropriate. Calling such embryos donated embryos debases the amazing gift that embryo donors provide when donating their embryos.
Who should set the standards?
SART has reviewed the concerns stated in my previous blog but I don’t think it yet has arrived at a
conclusion. My understanding is that the ASRM Ethics Committee is to take up the topic during the early months of 2013. As our main guiding societies, I believe they need to take the lead, develop position statements and provide ethical standard of care guidelines for all practices to use.
Once ASRM and SART have provided ethical standard of care guidelines, I will next request that the
Canadian Fertility and Andrology Society and the European Society for Human Reproduction and Embryology (I am a member of both) consider the topic and respond with their own recommendations if they see fit.
It is not out of the realm of possibility that numerous societies could collaborate to form a consensus, such as they did when they banned the support and publication of human reproductive cloning research.
So where are we now on this dilemma? SART has discussed the topic but summary statements are pending. The ASRM Ethics Committee will soon meet, with the embryo bank topic apparently on the agenda. Assuming the Ethics Committee feels the topic has merit, I am uncertain how long it will take for them to release a position statement. I am hopeful that “the powers that be” will be attentive in finding a compromise that will allow CC to continue to offer their skilled reproductive services while preventing the formation of an embryo bank, no matter the size, further clarifying who should own embryos as well as the definition of embryo donation as it pertains to the current situation.
I don’t know about you but I don’t really like the idea of “McEmbryos,” or the commodification and “Wal-Martization” of human embryos. Patients should own them and decide their destiny. I am hopeful that our guiding societies will do just that – guide us on this sensitive and important topic.
Thanks to Grace Centola, Ph.D., for helping to find the New York State statutes pertaining to embryo banking.
Thank you to Jessica Cussins for her blog on the topic, the reference by Professor Obasogie and her followup on the now closed Abraham Center for Life.
Ethics Committee of the American Society for Reproductive Medicine. American Society for Reproductive Medicine: defining embryo donation. Fertil Steril. 2009 Dec;92(6):1818-9
Recently, Alan Zarembo of the L.A. Times released a story alleging that California Conceptions was combining donated eggs with donated sperm and called them “donated embryos.” If there were leftover cryopreserved embryos, ownership of the embryos apparently went to California Cryobank (CC). If true, this is an egregious assault on reproductive ethics.
Defining embryo donation
About one-third of all patients undergoing in vitro fertilization (IVF) will have excess embryos to cryopreserve. About one-half of these will not be used for reproduction by the patients who created them. (Bangsboll et al., 2004; Lyerly et al., 2010) Embryo donation occurs when patients with unused cryopreserved embryos make the amazing decision to pay it forward and donate their embryos to patients in need. In true embryo donation, the patients own the embryos and make disposition decisions regarding their embryos. It is estimated that 2-10% of all cryopreserved embryos are donated to patients in need.
Why is creating “McEmbryos” so wrong?
Allegedly, California Conceptions would use donor sperm and donor eggs to create embryos. At times, all the resulting embryos would be transferred simultaneously to numerous couples, each receiving approximately two embryos at a time. This would commonly be called a “split donor/donor cycle.” It is, however, an absolute misrepresentation to call them donated embryos. At least in this split donor/donor cycle scenario, where all the embryos were transferred, there would be no cryopreserved embryos left whose ownership was uncertain.
What if not all the embryos were transferred and some were cryopreserved? As I understand, CC transferred no more than two embryos at a time to numerous patients, with the remainder cryopreserved. The residual cryopreserved embryos became the property of CC.
According to the article, egg and sperm donor profiles are sent to prospective recipients. As soon as CC received a “buy-in” from a few patients, the “donor embryos” were created from the donor eggs and sperm. Who made the decision to combine these two donors? What happens to the left over cryopreserved embryos? The article stated that dozens of embryos would be created through the combination of a pair of donors with the embryos then frozen while CC looked for patients who wanted them. And yet, the clinic claimed to have only ten sets of cryopreserved “donated embryos” in their tanks at any given time.
While they stated they didn’t want to create a bank, it would appear that this is precisely what was being done.
I feel there is a potential conflict of interest on the part of any IVF facility regarding the disposition decision of any cryopreserved embryos that they own. Patients normally have options such as using them to build their family, donation to science, donation to a laboratory for quality assurance testing and personnel training, keeping them cryopreserved forever, and finally, donating them to patients in need (embryo donation).
With the methods described in the article, a number of logistical and ethical questions arise:
- Were the sperm and egg donors fully aware of what was to be done with the resulting embryos?
- How did the IVF practice decide which sperm and egg donors should be combined? Was this decision made through market research? If so, who made these decisions?
- Is anyone tracking where all these donor-donor conceived offspring end up?
- Who ultimately owns the cryopreserved embryos? In the article, the physician interviewed said the clinic owned them when they were frozen
- Who makes the disposition decisions regarding these embryos? Will the IVF facility that owns the embryos be likely to make disposition decisions that do not benefit their bottom line? Who has the best interests of the cryopreserved embryos at heart when the embryos are owned by the IVF facility? Is it possible that CC is the entity that is really “donating” their remaining cryopreserved embryos
- What happens to the cryopreserved embryos if the practice closes or is sold?
- Perhaps most important, although it may not be a problem presently but for the future, what happens to the cryopreserved embryos that are never chosen?
While certainly not meaning to demean the cryopreserved embryos, I can’t help but think of these dono/donor cryopreserved embryos as fast food embryos or “McEmbryos.” I can just see the patients coming in, looking above the cash register to the menu above and ordering a “Number 3,” which has a burger (i.e., bright, blonde-haired, blue-eyed egg donor) and fries (i.e., handsome, athletic and tall sperm donor) and ends up getting the order supersized to boot (i.e., requesting twins). I should write clearly that this is not the current method CC uses to to match recipients to remaining cryopreserved embryos but the slippery slope exists and other practices may eventually emulate this process
What did EDI try to do over the past year to remedy the problem?
We suspected what might be happening at CC well over a year ago but didn’t have proof. We approached the American Society for Reproductive Medicine (ASRM) who examined the information and eventually sent it on to the Society for Assisted Reproductive Technologies (SART). SART did an investigation agreeing with our preliminary assessment. Unfortunately, CC was not a member of SART so they had little influence with CC.
There was some discussion of placing CC on the Center for Disease and Control’s (CDC) radar, asking that they potentially audit CC. I am not aware if this was ever done.
There was some discussion of revising the Ethic’s Committee Opinion on embryo donation detailing the inappropriateness of creating “McEmbryos,” but in the recent revision sent out to all ASRM members to review this past August contained no such language. I contacted ASRM and volunteered to help write the couple of paragraphs that would address the issue but I was never contacted. My current understanding is that the ASRM Ethics Committee will be taking up this issue in the beginning of 2013 and I am hopeful they will make a stand against creating “McEmbryos.”
Is it really ASRM or SART’s fault?
ASRM and SART are membership organizations. Anyone can join ASRM whereas SART is only open to IVF practices. These entities are not designed to truly police their members. Certainly, they can bar them from membership, but let’s face it, this is really not much of a punishment. Most patients are not really aware if a practice is a member of either organization, so expulsion does more to protect ASRM and SART from criticism than it does to protect the patients.
In reality, I am not suggesting that ASRM or SART begin sanctioning their members. These organizations are made up of bright individuals wanting what is best for members and patients alike. I don’t believe ASRM or SART could ever expose themselves to legal liability and try to be anything more than what they were originally designed to be.
I feel criticism towards ASRM and/or SART is potentially misplaced. While I do feel these organizations can certainly take a stand against the creation of “McEmbryos,” they can only provide educational materials and information to members and patients. never entering the realm of fining, condemning practices or policing practices. That is simply not their job.
I am not being insensitive to the needs of the patients
California Conceptions is providing amazingly healthy embryos to patients in need. How could anyone not be touched the story twin girls born to a single 41 year-old woman? There is no question that the donor/donor split cycle can be far more cost effective than many other options. The ends to this process are what we all strive for – a healthy family.
Call me old-fashioned but I still feel there are instances where the ends cannot justify the means. Are we are loosing all respect for the embryos and treating them utterly as a commodity? The slippery slope is becoming quite steep. Are we ready for expanding banks of unclaimed embryos across the country owned by practices or physicians and not the patients? I’m sorry but the means being used here are fraught with uncertainty and may result in a list of unintended consequences.
What are the potential repercussions of the L.A. Times story?
At least this election year is over. I had grave concerns that the story would break early in the election cycle and would become a political football, resulting in a series of consequences around the country. I still believe we are at risk in the following ways:
- • Poorly designed and reactive legislation may yet be created on state or national level
- • This story may motivate the “Personhood” advocates by encouraging them to win personhood for embryos thereby protect them from becoming “McEmbryos”
- • There will be “guilt by association,” leaving other legitimate embryo donation facilities open to criticism and ridicule
- • All of this will reflect poorly on basic IVF facilities that are frequently viewed as unregulated, even though we are accountable to more regulatory agencies than any other area of medicine
There may be significant backlash regarding this story and we should all be prepared to answer questions that may arise from the media, our peers and our patients.
How can embryo donation programs hold but not own the donated embryos?
At Embryo Donation International (EDI), the embryo donors are still able to request that their donated embryos be returned if needed. For example, if the children of an embryo donor were tragically killed in a motor vehicle accident, it seems absolutely appropriate that the cryopreserved donated embryos should be sent back to the donors. To discourage this from being done without good reason, transportation costs for returning the embryos, which is estimated to be $300, are the responsibility of the original donors.
Once the embryos are transferred into the recipients, however, they now “own” them. In this way, EDI never truly owns the donated embryos. We are the conservator and protect the embryos while never making any disposition decisions regarding their fate. We never own the donated embryos and we encourage all embryo donation facilities adopt this model of conservatorship.
What can be done to correct the current problem?
- Various membership organizations such as ARSM, Pacific Coast Fertility Society (PCFS), SART and RESOLVE could release position statements condemning the creation of “donated embryos” without a destination. This could help guide public opinion.
- Perhaps the embryo donation programs would be willing to sign a contract stating that they will not participate in the creation of embryos without a destination. Programs willing to sign and honor the contract would be adhering to the highest of ethical standards.
- Through the court of public opinion and if the L.A. Times article is accurate, patients may no longer want to participate in what they feel in an unethical practice.
- Legislative action on the part of California may be necessary but this will take time and a great deal of expertise. We run the risk, however, of having well-meaning legislative actions spilling over and harming the process of embryo donation or IVF itself.
- CC itself may need to modify its business model by allowing patients to own the cryopreserved embryos.
From my perspective, we have a few options:
Something really needs to be done. I don’t feel that this unethical practice should continue. A corporation, business or physician practice should never own embryos, no matter how brief. These embryos are also not truly donated unless you feel CC is able to donate the excess cryopreserved embryos. The question is if we should play an active or a passive roll in determining what takes place. I personally prefer the active roll so you can count EDI in on doing our best to guide the process.
Sour grapes? Nope, just sour taste!
CC is a potential competitor of EDI. I have made this clear to each and every person I have spoken to regarding this current dilemma. When we were contemplating the expansion of our ten-year embryo donation program into EDI, we also looked at the option of a money-back guarantee such as is offered by CC. Understanding the delivery rates for recipients of truly donated embryos ranges from 27-45%, the likelihood of returning the majority of the payments back to recipients made it unlikely we could even keep our doors open. Most “shared risk” options also charge a premium on top of the normal fees. Recalling that embryo recipients are emotionally and financially drained, the idea of tacking on a large additional fee seemed unfair to the recipients and quite impractical to the process. Embryo donation works for recipients, in part, because it is more cost-effective than many other options.
So you see, it is not “sour grapes” that is guiding my writing; it is just a sour taste. If the article was accurate, I feel strongly that creating “McEmbryos” is an affront to IVF and embryo donation programs, misleading to embryo recipients and totally unfair to the cryopreserved embryos that are currently waiting to be chosen.
If you agree, please co-sign this blog….
We are going to do something a bit different with this blog. We are strongly encouraging not just the routine comments that follow our blog but we are also asking that practices, patients and interested parties who agree that creating “McEmbryos” is ethically inappropriate sign below. By endorsing the statement below, we will hopefully begin to separate ourselves from such entities that practice the “McEmbryo” method of “embryo donation,” moving forward with a resolution that will work best for all.
By signing below, I do hereby agree that creating banks of cryopreserved embryos is ethically unjustifiable and support sound solutions that will adhere to the highest of ethical standards supporting patients and cryopreserved embryos in the best possible way.
Lyerly A, Steinhaser K, Voils C, Namey E, Alexander C, Bankowski B, Cook-Deean R, Dodson W, Gates E, Jungheim E, McGovern P, Myers E, Osborn B, Schlaff W, Sugarman J, Tulsky J, Walmer D, Faden R, Wallach E. Fertility patients’ views about frozen embryo disposition: results of a multi-institutional U.S. survey. Fertil Steril 2010;93:499-509.
Federal Funding of Embryo Donation and “Embryo Adoption:” Is it time for the Federal Government to Reconsider Its goals?
By: Craig R. Sweet, M.D.
The “Defunding” of a Government-Supported Program
On March 2, 2012, it was reported that the Obama Administration wanted to defund the embryo donation/adoption awareness federal program that has been run by the Office of Population Affairs, part of the U.S. Department of Health and Human Services. Spokespeople from Nightlight Christian Adoptions, the National Embryo Donation Center and Snowflakes Embryo Adoption programs were quoted as opposing the defunding decision. It should be noted they all had received or were receiving funding from the federal program, so their reactions were not unexpected.
Initially, the federal program was created in response to President Bush’s push to use cryopreserved embryos to create families and steer away donations from human embryonic stem cell research. Since 2002, over 22 million dollars has been spent by the federal government on the awareness programs.
The Predictable Response
Certainly during an election year, the firestorm that followed was probably predictable.
There were calls stating that the Obama Administration was “pro-abortion,”
I’ve never met such a person in my entire life, although many have been “pro-choice.”
Congressman Chris Smith, a New Jersey Republican, was quoted a saying, “Assertions that leftover embryos are better off dead so that their stem cells can be derived is dehumanizing and cheapens human life.”
Come on now… this decision does not mean that all cryopreserved will be destroyed. It simply means that all of us who are dedicated to the concept of embryo donation need to work harder and smarter with non-federal funds to make certain patients are aware of the embryo donation option.
Nothing could be further from the truth. Many programs throughout the country offer embryo donation and will continue to do so long after federal funding disappears.
Could we all just trim the hyperbole a bit?
Is it a Coincidence that the Phrase “Embryo Adoption” Predated the Personhood Amendments?
I suggest paying less attention to the hype and instead examine the realities of the ways that federal funding can influence the competitive free market with unintended consequences. The propagation of the term “embryo adoption” sprouted the appearance of the personhood amendments and legislation, which are focused on declaring that eight-cell early embryos are people. The consequences of these enactments are far reaching, including monumental legislative changes, restrictions on the care of women, and severe restrictions to the treatment of the infertile patient. (See my previous blog on the Mississippi Amendment here.)
Not Sour Grapes but Concerns Regarding Discrimination
Let it be understood that Embryo Donation International (EDI) applied last year for the federal funding in question, but we were not awarded a grant. In partnership with professors at Florida Gulf Coast University, we proposed thirteen different fresh and innovative projects to increase awareness, as well as provide embryo donation services. While we were disappointed, we were not surprised that the organizations, for the most part, receiving funding had been granted it before and this was our first submission. EDI was not previously dependent on the funding so there were no significant changes in our day-to-day operations. The projects are slowly being rolled out, funded instead by SRMS/EDI.
What bothered us was that over the years some of the organizations receiving the bulk of the funding were faith-based and discriminated against some patients. While the projects themselves were potentially more neutral, the organizations were not. Health and Human Services (HHS) apparently looked only at the proposals in determining the awards, making the awarding of grants potentially flawed.
The grant process essentially compartmentalized the proposals. If an organization provided certain services, which the federal government did not fund directly, but the organization was awarded a grant to provide other services, the government essentially compartmentalized the grant money separate from the procedures it didn’t directly support. I understand the concept but do not feel the grant committees should have made the decision based only on the grant proposals. They also needed to take into account the overall views and beliefs of the organization requesting funding. There needs to be times when the government must look at the trees and not just the leaves.
I believe there were instances where the funds should be withheld. The funded organizations should have provided a minimum standard of practice guidelines in line with the non-discrimination clauses outlined in the grants. Entities awarded the grants should not have discriminated with regards to race, religion, ancestry, gender, marital status or sexual preference.
Being a faith-based embryo donation/embryo adoption organization also directly or indirectly excludes some patients, making it uncertain if the federal government should directly support such facilities, especially taking into account the separation of church and state. I know that faith-based embryo donation/embryo adoption entities were strongly supported by past administrations but should a neutral organization that does not discriminate and makes all faiths feel totally welcome be placed at a higher priority now? Is this more ethical and fair? Is this a better use of the shrinking tax dollars? Is it time for the federal government to reconsider their goals?
If both discrimination and faith-based issues were actually taken into account, many of the organizations discussed here never would have received the original federal funds.
It is not that I want these organizations to go away. Quite the contrary, they often do a great job, provide excellent services and fill a much-needed niche. Their funding should, however, be through sources other than the federal government because of the bias inherent to their provision of services.
Can the Government Afford Providing the Grants?
Understanding that the U.S. is running a severe deficit, when are we ever going to be willing to make difficult decisions? How are we ever going to get control of the budget if we can’t trim existing programs that may serve an important few when the many need assistance? We all need to look at the big picture and understand that “business as usual” is not practical in the current economic climate. I may be falling on the sword a bit, but shouldn’t we all be willing to sacrifice? Hey, I’m all for creating little taxpayers to help pay off the deficit. I’m just not sure that we can afford to do so through a government in the red. To do so with organizations that discriminate makes absolutely no sense at all.
If federal funding is to continue, it needs to be provided to organizations, and not necessarily my own, which do not discriminate and are not faith-based. In addition, giving “embryo adoption” programs federal funds so they can support personhood amendments should be reconsidered. Having the government eventually spend even more money and time contesting the amendments and statutes in court defies understanding. Perhaps the congressional appropriations committees, who will make the final decision regarding federal funding, will take the concepts of non-discrimination and non faith-based alternatives into account and fund the programs with new and fairer goals.
Rest assured, unlike the rhetoric would lead one to believe, embryo donation is here to stay, regardless of the decisions of Congress and the grant process. How do we know? We’ve been providing the service for 11 years and will continue to do so in the years ahead, without cessation, as long as there are cryopreserved embryos available to donate.
Craig R. Sweet, M.D.
Embryo Donation International
A Guest Post by: Harold Eskin, Esq.
New laws are beginning to appear on the books of many states that support “embryo adoption.” “Embryo Adoption” is placed in quotation marks because that phrase alone has unique connotations that I discuss briefly below. The term embryo “donation” is also a commonly used expression describing giving one patient’s/couple’s cryopreserved (frozen) embryo(s) to another patient/couple trying to expand their family, but who otherwise have been unsuccessful through natural and/or advanced reproductive techniques.
Georgia was the first state to pass an embryo adoption bill (2009) that provided an opportunity for intended parents to go through an adoption procedure to obtain the right to gestate a thawed frozen embryo. Other states, such as Florida, have embryo donation statutes on its books, which allow a couple to receive a donation from another (open or anonymous) of a frozen embryo. While the end results may appear to be the same, the road getting there and implications of using the different phrases are vastly different.
The Georgia law, which was championed by Right to Life groups, treated a frozen embryo in much the same way as it would a child already born. The new law and procedures mimic that of other adoption provisions and gives the frozen embryo many of the same rights and considerations of a born child, including using a “best interest of the child” standard in the adoption analysis. This philosophy is consistent with the concept that a child’s rights (as compared to the mother’s) begins at conception rather than birth and has implications in the abortion-right to choose/right to life arguments ongoing disagreements and potential laws expressing same.
Florida and many other states have historically treated frozen embryos as the property of the parents, who have the right to donate or dispose of the frozen embryos as they saw fit. The recipients received the frozen embryos as property under the respective laws of their state and could use or dispose of the frozen embryos as they saw fit. This process allowed for freer access to unused frozen embryos and discouraged the abandonment/discarding of them.
The agenda of the Georgia law was not necessarily meant to “protect” the frozen embryos but was designed to advance a political agenda of creating additional barriers to a women’s right to choose (i.e. restrict abortion) and to further control the reproductive rights of patients by discouraging the use of advanced reproductive techniques, such as in vitro fertilization as well as the cryopreservation and storage of excess embryos.
Up to now, there have been few attempts to export the Georgia concept in other states. This is perhaps due to the country’s economic challenges, but this possible trend needs to be closely monitored. The implications of providing “personhood” to embryos are far and wide and the Georgia statute is one of the first successful salvos to be launched with others most certainly to follow. Mississippi is currently targeted for a constitutional amendment to give embryos personhood and many other states are next in line for challenges that may significantly impair the health and reproductive care of women.
Embryo donors and recipients are faced with a number of life-changing decisions as they contemplate disclosure. This is the final segment of a five-part series summarizing the complex decisions surrounding the disclosure of the genetic origins of embryo donor-conceived individuals to family, friends and the offspring themselves.
What are some of the questions that embryo donors and recipients must explore before deciding to disclose or not?
Embryo donors must decide if they want a relationship with the donor-conceived individual being raised by another family. Are the donors willing to disclose their donation of embryos, which may have taken place years ago, to friends and family, including their existing children? At what age would they want the donor-conceived individual to contact them?
Recipients need to ask related questions about whether they should tell their embryo donor-conceived children about their origins. If they want to do so, when should they tell and what information should they share? Are the recipients comfortable letting their family members and friends know of their infertility history? Will the recipients and offspring be criticized, ostracized or, even, excommunicated by these same people or by their religion? Are they comfortable with their child contacting and potentially having a relationship with the embryo donors and their blood siblings?
Can an understanding of adoption disclosure be used in the world of embryo donation?
It is understandable, but potentially misguided, that some professionals believe embryo donation is identical to the adoption of a live child. I have written about this topic before. While the American Society for Reproductive Medicine (ASRM) states that the term “embryo adoption” should not be used, some facilities do so openly.
However, regardless of the legal differences, there also are a number of very practical differences:
- Because the embryo recipient carries and delivers the child, her pregnancy may look natural, making disclosure by the recipients optional. Adoption is much more difficult to hide.
- Disclosure of the embryo donation process may not be well accepted by friends, family and some religions. While not universally accepted, adoption may be better tolerated.
- As with sperm donation, single women and lesbian couples who conceive with donated embryos are more likely to disclose because the fatherhood issue inevitably arises. Heterosexual couples, however, are the least likely to disclose.
How often is disclosure currently revealed?
There is a growing body of data that suggests only a minority of the embryo donor-conceived children are told of their origins. In an English study of 17 embryo donation families with donor offspring between five and nine years old, only 18% of the recipient parents had told their children (MacCallum F. et al. 2008). An additional 24% planned on telling, 12% were undecided and 47% stated they would not tell. The reality is that many of those who planned on telling or were undecided may eventually decide against disclosure as the child ages and enters the more difficult years of adolescence. This seemed to be different than other donor procedures where 46% of donor sperm insemination parents and 56% of egg donation parents planned to disclose (Golombok S, et al. 2004).
Why has anonymity been the norm in embryo donation?
The concept of anonymity in egg/sperm/embryo donation has its roots in the physician/patient relationship to meet a series of needs (Daniels K. 1997). To assume that it should be discontinued for everyone doesn’t take into account the ethical, social and religious circumstances of different patients.
Since the medical profession assumes parents are able to make, without question, thousands of different choices for their children, assuming they are incapable of making a decision, such as disclosure which affects both the child and parents, is simplistic and rather paternalistic.
Why not disclose?
Let’s face it; there might indeed be a lack of societal approval of offspring who originated from donor material. Many people are judgmental regarding embryo donation, especially in cultures and religions that emphasize genetic inheritance. Recipients have legitimate reasons to fear the potential damage to themselves and their children from other people’s negative reactions, social stigma and resulting isolation (Shehab D, et al. 2008).
Some of the reasons recipients do not want to disclose include protecting their children and family relationships from rejection, not feeling a need to disclose or uncertainty about how to approach the matter (MacCallum F, et al. 2007, Jadva V, et al. 2009 & Mahlstedt PP, et al. 2010). Disclosing also will broadcast their infertility issues, which they may have kept quite private in the past (Klock SC. 1997). Another common reason given for not disclosing is fear that they as non-genetic parents will be rejected. Actually, there is no data to support or deny this last very human concern.
Unlike adoption, it is doubtful that the offspring of embryo donation will have to resolve the “history of rejection” unlike adopted children who were separated from their birth parents (Widdows H, et al. 2002). Families created through embryo donation are a product of a loving gift and not formed from perceived rejection. Therefore, some of the motivation to disclose in adoption simply does not exist in embryo donation.
Why should parents disclose?
The most common reason for embryo recipients to disclose is a fear that the child will accidently discover the facts at a later date (MacCallum F, et al. 2007). One study of adult offspring of sperm donation found that about 1/3rd of the individuals learned of their donor origins after an argument, from another person or they just figured it out themselves (Mahlstedt PP, et al. 2010). In a recent study, about 10% (47/458) of the sperm donor offspring who were searching for their donors and half-siblings found out by accident (Beeson DR, et al. 2011). They were apparently told by siblings, family or friends; discovered paperwork or inheritable medical issues that their recipient parents did not have; inadvertently overheard their parents talk about it; or it was revealed as a consequence of divorce. Recipients who tell family and friends but not the child are asking for future problems. When examining these two studies, it is clear there is a reasonable risk that the offspring will discover their origins, even under the best of circumstances. It also is important to realize that sperm, egg and embryo donation procedures are different when analyzing the study results.
There are some embryo donation recipients who feel it is simply best to not have secrets in the home. Others believe the embryo donor-conceived children have a moral right to know their origins. Some feel it is important that the children understand and connect to their genetic inheritance beyond the family who raised them.
What should be disclosed?
There are three decision levels in disclosure: 1) To decide to disclose, 2) To decide what age to disclose, and 3) To decide what information is to be provided. One can simply tell the child he or she was embryo donor-conceived but the child is certain to have more questions. At the very least, I believe providing the donors’ photographs (when they are available) as well as their medical, surgical, psychiatric, family and social histories are needed. However, providing actual identifying information needs to be handled carefully and thoughtfully.
When should disclosure take place?
Disclosure early in the child’s development, certainly before age ten, would seem to be ideal. Some mental health professionals (MHP’s) feel it should be discussed as early as possible. If disclosure occurs in adolescence or later, young adults may feel mistrust, alienation, identity confusion, frustration and even hostility towards their family (Ethics Committee, 2004 & Mahlstedt PP, et al. 2010). About 46% of donor sperm offspring who were told at the age of 18 or older stated they were confused. It is probably best to tell the child before the age of 10 than wait until later where there is a doubling of the number of children who were unsettled with the information.
Why do embryo donor-conceived individuals want to know their genetic origins?
Many embryo donor-conceived individuals may be curious about their donors’ physical characteristics and original motivation to donate, as well as possess a desire to know their genetic identity and, perhaps, provide an ancestral history for their own children. (Ravitsky V, et al. 2010 & Mahlstedt PP, et. al. 2010).
For many, the search for their donors may go well beyond just seeking simple information. In two recent studies of offspring searching for their donor sperm fathers, 80-88% were intensely curious about their donor and wanted to contact him. Up to one-third desired an actual relationship with the sperm donor (Beeson DR. 2011 & Mahlstedt PP, et al. 2010). It should be understood, however, that studies such as these might not represent a balanced patient sample. Only offspring searching for information contributed to those studies. There wasn’t a practical way to capture the opinions of those offspring who were not part of the Internet support groups, who may indeed represent a very silent majority.
Do embryo donor-conceived offspring have the right to know their origins?
Many donor-conceived individuals feel they have a right to know their genetic origins (Shehab D, et al. 2008). Embryo donors and recipients, who may prefer an anonymous process, have rights that compete with those of the donor-conceived individuals. Embryo donors and recipients have legal rights that are in direct contrast to the offspring’s moral view that family secrets shouldn’t be kept. There is no easy way to reconcile these contrasting legal rights and moral perspectives. Most agree, at the risk of offending those who feel differently, that in a society ruled by law, a legal right ultimately trumps a perceived moral right. Thus, the legal rights of donors and recipients continue to prevail in this country.
Should disclosure be mandated?
There is a stronger preference to discard or abandon the embryos than there is to donate them. Placing any impediments on embryo donation, such as mandating disclosure, may not only reduce the number of embryos donated but will almost certainly result in a greater number of embryos discarded or abandoned. I cannot imagine the well-meaning individuals who are asking for mandated disclosure would want the loss of embryos and potential families to be an almost certain unintended consequence.
Parents who used donor material feel the decision to disclose is private, highly personal and should be left to the discretion of the individual families and not regulated in any way (Shehab D, et al. 2008). A dual-track of disclosure/nondisclosure system will most meet the needs of everyone (De Jonge C, et al. 2006). We need to educate, guide and support, but not force these processes.
What happens to children who learn or don’t learn about their origins?
Interestingly, children do not seem to be harmed if disclosure does not take place.
Warm parent-child relationships and positive child development have been documented, although few of these donor embryo-conceived children have yet entered adolescence (Golombok S, et al. 2006). While more data and follow up studies are certainly needed, embryo donation children do not seem to be at increased risk for developing psychological problems during early and middle childhood, regardless of disclosure decisions. Supporting these findings about early disclosure, neither the children nor the family seem to be harmed (MacCallum F, et al. 2007 & 2008). While not definitive, the research we have so far suggests that disclosure decisions, either for or against, will not cause irreparable harm to the embryo donor-conceived individuals or the parents who raised them.
Interestingly, research shows that embryo donation families are more child-centered than adoptive and, even, other IVF families, regardless of their disclosure status (MacCallum F, et al. 2007 & 2008). This may be due in part to the recipients’ older age and maturity compared to younger IVF and adoptive parents. Embryo donation-conceived children are tremendously appreciated, greatly desired and hard fought for by their parents. This should give embryo donors confidence that donor-conceived offspring will be well cared for by wonderful recipient families.
What should be considered if embryo donor-conceived individuals meet the donors?
If donor-conceived individuals connect their donors and/or blood siblings, it is important that everyone’s expectations be reasonable. Members of donor-linked families may have a significant mismatch regarding their levels of hope and expectation about contact (Scheib JE, et al. 2008). Some of the participants may have a tendency to romanticize the first meeting and future relationship. The participants should move slowly and carefully, without inappropriate expectations.
It is exceedingly important that the relationship between the parents who raised the child and the embryo donor-conceived offspring not be harmed, as this is the basis for the child’s stability and home life. The fear that this relationship will be damaged is one of the main reasons recipients prefer to not disclose, so it must be protected.
Long-term data regarding the relationships between embryo donors and embryo donor-conceived individuals is not yet available, so we simply are unable to tell any of the participants what the outcome may be (Grotevant HD, et al, 2008). The parents who raised the donor-conceived child may feel threatened by the relationship between the donors and offspring. It would be irresponsible for us as clinicians to assume that all will go well. We must remain cautious and counsel our patients carefully and individually until we have more information to guide them.
Can recipients get help in deciding if disclosure should take place?
Consultation with a mental health professional (MHP) regarding disclosure is strongly encouraged but the counselor must understand the subtle differences between embryo donation and adoption, where disclosure is the norm. Neutrality is required and finding a skilled and experienced MHP is important. Many patients resent direct suggestions about disclosing and far prefer a discussion that examines their own needs and perspectives (Klock SC, 1997). In reality, it is really not appropriate to give a uniform recommendation that does not take into account the personal, ethical and religious views of the embryo recipients.
Even more important, embryo recipients may want to hear from other recipients, people who have worked through the issues or are struggling with making the decision (Klock SC, 1997).
In our three recent surveys examining the perspectives of potential embryo donors, recipients and offspring, there were a few consistent findings:
- From the embryo donor perspective, the majority polled desired an open process.
- From the embryo recipient perspective, the majority polled desired anonymity.
- The majority of potential embryo donors and embryo recipients would disclose to their friends and family.
- If open-identity was available, the majority felt information should be shared and potential contact be made before the age of 18, which may differ in adoption proceedings.
Are reproductive facilities prepared for disclosure?
A medical providers’ first reaction will be to protect their patients: the embryo donors and recipients. State and federal statutes protect confidentiality and clear consent must always be provided before medical/identifying information is released to a third party. The reproductive facilities also will want to be insulated from any legal consequences should disclosure occur.
Some medical practices will be operationally challenged to have records available years after procedures are performed. Many states require that medical records be retained for seven years. The Federal Drug Administration (FDA) requires practices to retain for ten years the medical records of patients involved in third party conception, while the ASRM suggests the records be stored indefinitely. Being able to identify those particular charts from others that would otherwise routinely be discarded is a logistical challenge. In my practice, we color-code the charts involving any type of donor material, making them easy to pull and save.
I also feel embryo recipients have a responsibility to keep the information they were originally provided about their embryo donors protected and safe in case the practice’s medical records are ever lost or deleted.
Regardless, the facilities have a responsibility to assure charts are available and that systems are in place to make disclosure possible. Policies and procedures will need to be created so that they are ready when the requests come. Mirroring the adoption world in this instance may be of use.
How do recipients disclose?
Experienced MHP’s can provide invaluable assistance in helping embryo recipients present this sensitive information. Reproductive endocrinologists, well versed in this topic, may also be very useful in deciding how and when to tell the children. Forums where parents can discuss these issues with other parents who have lived them also may be indispensible. While few books exist on the topic, I will be reviewing one quite soon that does. Please stay tuned.
Using the following phrases and ideas in the discussion may be useful:
- We wanted you to be in our lives so much, we had to travel far and wide to find you.
- The people who gave us their embryos, which included you, gave us the most wonderful gift in the world. They loved you so much that they wanted you to enjoy life with us.
- I got to carry and protect you, giving you all the love I could.
- Remember that eggs, sperm and embryos don’t make a family any more than bricks make a happy home. What makes a family is how we support and love each other.
A good way to start this conversation is by emphasizing love, your commitment to find them, the amount of time, effort and emotion you invested in bringing them into the world, and the fact that genetics doesn’t necessarily make a family. I’m sure MHP’s will offer recipients some great phrases and ideas, which I will encourage that they share with us on this blog.
What are the long-term consequences of disclosure?
Research is needed to find out more about long-term disclosure outcomes. It is difficult to ascertain how children are fairing who are not told about their origins fare because these individuals are not readily accessible to research. Also, what happens over time with open donation is largely unknown. I feel it is unrealistic to assume that everyone will live together as one big happy family. I suspect, however, that the donor-conceived children will benefit in establishing connections with blood siblings.
If disclosure occurs and the offspring are destined to contact their genetic parents, their reunion should not be romanticized. They will not necessarily be welcomed with open arms up to two decades later by the donors. In fact, we don’t have any idea how well or how disruptive these reunions will be. Once again, research is desperately needed.
Is there a disclosure compromise available?
The idea of open-identity is a fascinating concept for embryo donation. This would allow donors to be contacted if the recipients eventually disclose the genetic origins to their donor-conceived offspring. According to our recent surveys, most respondents wanted disclosure with open-identity to occur before the children turn 18 and have the ability to contact the donors. But what harm will come to the child if disclosure and contact are done earlier in the formative years? Would there be some advantages to knowing earlier rather than later in adulthood?
It would seem that if recipients are disclosing for the sake of the child, it may truly be best to allow disclosure and open-identity earlier rather than later. I hope to pose this question to MHPs in the months to come.
I feel it is far better that we design programs with open-identity options but not legislate them. Legislation, especially if it is retroactive, will inject uncertainty about every current rule governing the practice of egg/sperm/embryo donation (Guido P, 2001). Legislation will do more to shut donation processes down than any other development. I understand there are some donor-conceived individuals who feel that all information should be open to review, but past contracts were doubtfully formulated that way. Although unpopular with some, the perceived rights of the donor offspring should not be allowed to circumvent the true legal rights of the donors and recipients.
At a recent ASRM meeting, some MHPs and reproductive attorneys lamented that anonymous embryo donations are allowed to continue. I explained that if they want to change physicians’ and patients’ perspectives on anonymity, they would only succeed with data showing the long-term benefits of disclosure. Until that time, clinicians and patients alike will be hesitant to adopt a stance that is not yet supported by unbiased research. We should tread lightly and make very few assumptions when it comes to issues so important as disclosure or we risk doing harm to our patients. We all need a bit more information in caring for our embryo donors and recipients. We must never forget, however, that embryo donation-conceived individuals, who were never our actual patients, and are still owed thoughtful care and tremendous compassion. We must keep an open mind and learn from their perspective.
There will always be a group of patients who will want anonymity and we all need to respect their wishes. Everyone involved in this debate needs to take a breath and step back. I grow weary of a very vocal group of patients who believe their way is the single right way. This is not a black and white issue. We should instead see the disclosure controversy in shades of grey. Compromise these days seems to be viewed as form of weakness in our country’s politics. This country was founded on the basis of choice and I feel strongly that we should design systems that will allow for choice while educating the participants of embryo donation about their options and the potential results of both disclosure and non-disclosure to embryo donor-conceived individuals. It is our responsibility.
As always I welcome a respectful dialogue, especially from those who disagree. I look forward to reviewing research studies that will guide all of us so we may better counsel embryo donors, embryo donor recipients and especially the embryo donor-conceived individuals, who remain the final focus of this entire discussion.
Associated Blog Segments:
- Introduction: Disclosure Issues in Embryo Donation
- Embryo Donor Perspective
- Embryo Recipient Perspective
- Survey Results: Imagine you are an Embryo Recipient
- Blog: Disclosure Issues From the Perspective of the Embryo Recipient (Part 1 & Part 2)
- Embryo Donor Offspring Perspective
- Survey Results: Imagine you are an Embryo Donor Offspring
- Blog: Disclosure Issues From the Perspective of the Embryo Donor Offspring (Part 1 & Part 2)
- The Donor Sibling Registry: https://www.donorsiblingregistry.com/
- UK Donor Link: http://ukdonorlink.org.uk/ (funding uncertain)
- Western Australia’s Voluntary Register for Donors, Offspring and their Families: http://www.voluntaryregister.health.wa.gov.au/home/
- BCdonorconception, British Columbia donor offspring: http://groups.yahoo.com/group/BCdonorconception/
Donor Sperm Facility Registries:
- California Cryobank’s Sibling Registry: http://www.sibling-registry.com/
- Fairfax Cryobank: Donor Sibling Groups: http://www.donorsiblinggroups.com/Home_Page.html
General Third Party Conception Support:
- Donor Conception Support Group: http://www.dcsg.org.au/
- PCVAI, People Conceived via Donor Insemination: http://groups.yahoo.com/group/PCVAI/
- International Donor Offspring Alliance: http://www.idoalliance.org/
- The Donor Conception Support Group of Australia Inc: http://www.clan.org.au/dcsg/index.html
- Canadian Donor Offspring: http://www.canadiandonoroffspring.ca/
- Germany: http://www.spenderkinder.de/
Beeson DR, Jennings PK, Kramer W. Offspring searching for their sperm donors: how family type shapes the process. Hum Reprod. 2011 Sep;26(9):2415-24.
Daniels K. The controversy regarding privacy versus disclosure among patients using donor gametes in assisted reproductive technology. J Assist Reprod Genet. 1997 Aug;14(7)-373-5.
De Jonge C, Barratt CL. Gamete donation- a question of anonymity. Fertil Steril. 2006 Feb;85(2)-500-1.
Klock SC. The controversy surrounding privacy or disclosure among donor gamete recipients. J Assist Reprod Genet. 1997 Aug;14(7)-378-80.
Ethics Committee of the American Society for Reproductive Medicine. Informing offspring of their conception by gamete donation. Fertil Steril. 2004 Sep;82 Suppl 1-S212-6.
Ethics Committee of the ASRM. Informing Offspring of their conception by gamete donation. Fertil Steril 2004;81(3):527-31.
Golombok S, Lycett E, MacCallum F, Jadva V, Murray C, Rust J, Abdalla H, Jenkins J, Margara R. Parenting infants conceived by gamete donation. J Fam Psychol. 2004 Sep;18(3):443-52
Golombok S, Murray C, Jadva V, Lycett E, MacCallum F, Rust J. Non-genetic and non-gestational parenthood: consequences for parent-child relationships and the psychological well-being of mothers, fathers and children at age 3. Hum Reprod. 2006 Jul;21(7):1918-24.
Grotevant HD, Wrobel GM, Von Korff L, Skinner B, Newell J, Friese S, McRoy RG. Many Faces of Openness in Adoption: Perspectives of Adopted Adolescents and Their Parents. Adopt Q. 2008 Jul 1;10(3 & 4):79-101.
Guido P. The reduction of sperm donor candidates due to the abolition of the anonymity rule: Analysis of an argument. J Assist Reprod Genet. 2001 Nov;18(11)-617-22.
Jadva V, Freeman T, Kramer W, Golombok S. The experiences of adolescents and adults conceived by sperm donation: comparisons by age of disclosure and family type. Hum Reprod. 2009 Aug;24(8):1909-19.
Klock SC. The controversy surrounding privacy or disclosure among donor gamete recipients. J Assist Reprod Genet. 1997 Aug;14(7)-378-80.pdf
MacCallum F, Golombok S, Brinsden P. Parenting and child development in families with a child conceived through embryo donation. J Fam Psychol. 2007 Jun;21(2):278-87.
MacCallum F, Keeley S. Embryo donation families: a follow-up in middle childhood. J Fam Psychol. 2008 Dec;22(6):799-808.
Mahlstedt PP, LaBounty K, Kennedy WT. The views of adult offspring of sperm donation: essential feedback for the development of ethical guidelines within the practice of assisted reproductive technology in the United States. Fertil Steril. 2010 May 1;93(7):2236-46.
Ravitsky, V. & Scheib, J.E. (2010). Donor-conceived individuals’ right to know. Hastings Center Bioethics Forum 2010;40:(4).
Scheib JE, Ruby A. Contact among families who share the same sperm donor. Fertil Steril. 2008 Jul;90(1):33-43.
Shehab D, Duff J, Pasch LA, Mac Dougall K, Scheib JE, Nachtigall RD. How parents whose children have been conceived with donor gametes make their disclosure decision: contexts, influences, and couple dynamics. Fertil Steril. 2008 Jan;89(1):179-87.
Widdows H, MacCallum F. Disparities in parenting criteria: an exploration of the issues, focusing on adoption and embryo donation. J Med Ethics 2002;28:139-42.
If the Embryos Were Created From Egg or Sperm Donors, is Consent Always Required Prior to Donating the Embryos to Others?
Frozen embryos created from the donation of either eggs, sperm or both hold great promise for the future of embryo donation. Over the past decade, the number of babies born through gamete donation, especially egg donation, has grown tremendously. Parents who already received the precious gift of donation from an egg or sperm donor may be more emotionally prepared to “pay it forward” with their remaining frozen embryos. These parents precisely understand how challenging third-party reproduction can be and realize their dreams of parenthood would not have been fulfilled if someone had not been generous enough to donate eggs or sperm. In fact, it would appear that embryos created from donor eggs and/or sperm are some of the most likely to be donated.
There are some, however, who feel there are lingering legal questions regarding consent if embryo donation was not specified in the donor’s original agreement. We obtained legal counsel, contemplated this issue from an ethical perspective and believe there are a few important points:
- The eggs/sperm are being donated to an individual or couple who have legal rights to them.
- The egg/sperm recipient has the option to use the donated material or discard it.
- Unless the egg/sperm donor contract has specific limits or stipulations, the decisions regarding disposition of resulting embryos should be up to the recipient.
Once a sperm/egg donor relinquishes his or her right to the genetic material, it is generally acknowledged that the recipient makes all the other decisions about the resulting embryos, including how many will be transferred during each cycle and what sort of prenatal care she will have. If fetal abnormalities are discovered during a subsequent ultrasound or amniocentesis, the recipient may make the extraordinarily difficult decision to end the pregnancy. Does she have to contact the original egg or sperm donor to be given permission to make this decision? If she is able to make this ultimate decision regarding her pregnancy, shouldn’t she be able to also make the decision to donate any of the remaining healthy embryos to a patient in need? If the ultimate decision is allowed, why not a lesser decision?
When we are asked to receive embryos created from donor material, we do our best (i.e., due diligence) to obtain a copy of the consent the egg or sperm donor signed. If there are any stipulations present, we feel we must completely honor them. Please keep in mind, however, that obtaining the original egg/sperm donor contract is very difficult. Practices that have this information infrequently provide it to us because of privacy concerns understanding that the donors themselves are not currently our patients. If, however, the contract fails to describe any stipulations or is ultimately unavailable, we feel the decision of what to do with the embryos should be made by those who have legal rights to them, the recipient. The greater good is seemingly served by donating these embryos rather than discarding or abandoning them.
Many of these issues could be circumvented if appropriate language were used in egg/sperm donor consents. We have done just that in my practice and our consents are available on-line for review. We let the donor know that the recipient may use the resulting embryos for personal use, donate to science, donate to single women, single men or lesbian/homosexual/heterosexual couples as decided by the recipient. We feel this covers all concerns and the sperm/egg donor is perfectly able to stipulate differently or discontinue the process with this information in mind.
The concern regarding the review of the egg or sperm donor’s consent is a guideline and not law. We accept embryos created from donated materials all the time with or without consents and always honor the stipulations of the donor when they can be found. Nearly just as important, we honor the stipulations of those that donate the embryos themselves.
There are many misconceptions about the embryo donation process. Our goal is to educate and stimulate discussion regarding the world of embryo donation. We welcome and encourage your comments.