Thursday, April 18th, 2013
Understandably, couples faced with the decision of choosing an egg donor typically have concerns about the donor’s genetic makeup. Fortunately, there are options available to help a couple identify any genetic disorders their donor might have and reduce the risk of passing these traits on to the child/children born from the donation.
There are two approaches when it comes to donor genetic screening, which are not mutually exclusive. The first and more traditional approach begins with genetic counseling. The genetic counselor will take a detailed family history from the donor and recommend specific genetic tests based on this history (and the ethnicity of the donor). Though this is still considered the standard approach in the industry, it has two potential flaws. First, the donor may be unaware of a specific genetic disease in her family or, worse, may choose not to disclose it. Also, single gene testing can be very expensive, especially when it comes to the “Jewish Panel” (performed on Ashkenazi Jewish donors), which can cost over $2,000!
A new alternative that has become more prevalent in recent years is Universal Genetic Testing (UGT). With UGT, a single saliva or blood sample can be analyzed for the presence of multiple recessive genes at a relatively low cost. Currently, the first such test available is called “Counsyl.” This test costs $350 and evaluates 100 recessive traits, including the Ashkenazi panel).
If a serious recessive trait is discovered, the intended father needs to be tested for that gene, or the donor should be excluded. Most doctors tend to encourage the latter choice.
Critics of UGT are uncomfortable with its “shotgun” approach. Detection rates for diseases not common in specific ethnic groups can be low, however, these women would not ordinarily be tested for these diseases so not much is really lost. In contrast, the cystic fibrosis screen in Counsyl contains more mutation than most of the traditional single gene tests currently available. Also several less-serious diseases (that do not have life-threatening affects) are included in Counsyl, and finding such a disease may unnecessarily create anxiety on the part of the recipient couple. Some doctors have started customizing the panel to exclude such conditions. One genetic disorder not included in the Counsyl panel is fragile-X. Women carrying this mutation can produce boys with severe mental retardation and autism. Fragile-X is the most common cause of mental retardation in boys and one of the few proven genetic causes of autism.
Both the traditional approach and UGT are appropriate options for screening egg donors. I personally recommend Counsyl and fragile-X testing on all new donors. If for some reason Counsyl is not desired, Caucasian non-Jewish donors are screened for cystic fibrosis, spinal muscular atrophy (SMA), fragile-X, and Tay-Sachs enzyme. I also recommend that a complete blood count be donor to screen for thalessemia. As always, your doctor and genetic counselor will be able to help in deciding which genetic tests are most appropriate for your donor.
- Michael Feinman, MD
Medical Director, HRC Fertility
Monday, August 29th, 2011
Second in a series of posts for intended parents from HRC’s Dr. David Tourgeman…
Perhaps the most difficult and emotional decision a person or couple is confronted with when trying to have a child is choosing whether or not to use an egg donor. For some, the decision may be relatively straightforward. Perhaps the adoption process has reached a dead end, or the woman has premature ovarian failure or another medical condition in which the ovaries will not produce eggs.
In most cases, the intended parents have already attempted many rounds artificial insemination and/or in vitro fertilization without success by the time they come to consider egg donation, and have been burdened with the bad news of multiple negative pregnancy tests. For most, the decision to move forward with a donor comes at the end of a long road of struggle and disappointment.
One biggest issue intended parents considering egg donation must confront is deciding whether they feel their genetics must play a part in conceiving a child, or if having a baby (despite the maternal genetic origin) is most important.
Intended parents are faced with two options: working with an anonymous donor, or choosing a donor who is willing to be “known” (non-anonymous). If the couple decides to move forward with known donor, typically a sibling or relative is chosen (although many egg donor agencies also have a list of donors who are willing to engage in an open cycle) and ideally that person is less than 35 years old and has children of her own. This provides a “bridge” in which (in the instance of choosing a family member) there can still be some genetic link to the intended mother. There are many patients who choose not to have a known donor because they either do not feel comfortable asking, do not have an age-appropriate relative, or simply do not want anyone to know that they’re using an egg donor.
On the other hand, choosing an anonymous egg donor can be a challenge. There are certainly many factors that the intended parents may want to address in their search. Physical attributes and similarities are often paramount, however, intelligence, ethnic origin, and family heath are also significant. From a medical standpoint, there are also many desired qualities to keep in mind that will help optimize the likelihood of success. I typically recommend that the donor be less than 30 years old, and that she have had testing for ovarian reserve that returned normal. She should have had all appropriate genetic screening tests and have been evaluated by a psychologist to make sure she is in a healthy state of mind and that her motives are genuine. Whenever possible I recommend choosing an anonymous donor who is “proven” (meaning she has done at least one successful donor cycle in the past – resulting in at least 15 eggs and a successful pregnancy).
Above all, the most important thing for the intended parents to consider is whether they will be fulfilled as parents if they decide to use a donor egg. As parents, you’ll have the opportunity to nurture and nourish your child in the way you have envisioned. The pregnancy and birth is the beginning of an amazing experience and, hopefully, the beginning of the intended parents understanding that, despite the egg donor’s genetic contribution, this baby is completely their own.
- David E. Tourgeman, MD, FACOG
Monday, October 12th, 2009
During the early years of IVF treatment, it was always assumed that transferring more embryos would improve success rates. Even 20 years ago, it quickly became apparent that this success came at the expense of a high multiple birth rate. In response o this, many European countries and Australia limited the number of embryos that could be legally transferred to woman’s uterus. While laudable, these restrictions tend to be rigid and do not always take into account the age of the producer.
In the U.S., we have adopted a voluntary system through the American Society of Reproductive Medicine (ASRM). The ASRM has published guidelines that take into account maternal age and are more flexible. However, as seen in the recent case of the famous octuplets, there are no serious consequences when a poor outcome is attributed to not adhering to these guidelines.
While these measures have greatly reduced the incidence of triplets and higher-order multiple births, the incidence of twins remains high, especially with egg donation. Many patients may think this is fine. In fact, many couples express a desire to have twins. Their preferences are affected by a belief that transferring two or three embryos improves success rates, and, for some, a financial motive that sees twins as a “two-for-the-price of one.”
The success rate belief may be inaccurate. Many European studies, as well as our experience, strongly suggest that the success rates with two day-3 embryos is equal to the success rate with one good quality (day-5) blastocyst. The ASRM guidelines allow either choice. Yet, many clinics are still transferring two blastocysts, with predictably high twin rates. So, what’s wrong with that?
The problem with twins is that they have a 50% chance of being born prematurely. As a result, they have higher rates of cerebral palsy and other complications of prematurity. The combined medical costs from IVF twins due to ICU care and life-long complications from prematurity are easily in the billions of dollars. Furthermore, from conception to delivery, there is a reduced chance of actually delivering two live babies. Even when twins are born close to term and are healthy, there are considerable financial and emotional costs associated with them.
With appropriate statistical analysis, it may be possible to demonstrate that the chance of a live birth is the same after the transfer of one blastocyst compared to the transfer of two embryos.
While twins may seem cute and a bargain at first, patients undergoing egg donation should inform themselves of the risks of twins and discuss the potential merits of single embryo transfer (SET) with their physician.
- Michael Feinman, MD
Medical Director, HRC Fertility
Huntington Reproductive Center Medical Group
Friday, October 2nd, 2009
When choosing an egg donor, it is understandable that women will want to select a donor who is similar to themselves in appearance and ethnic background. As with many aspects of Jewish Law, what may seem obvious and desirable may not conform to rabbinical interpretations of the Law. Ironically, since it is sometimes difficult to find suitable Jewish donors, these legal twists can actually help some people “let go” of their desire to work only with Jewish donors.
There are three concerns that rabbis have addressed in their discussions regarding the selection of egg donors. The first is accidental incest. The second is the legal status of a woman’s eggs. The third, and possibly the most important to recipients, is the Jewish status of the children born through egg donation.
Reasonable concerns exist that due to the anonymity of most egg donation arrangements, the actual children of the donor could accidentally marry the offspring of the woman who received her eggs. Sounds far-fetched, but rabbis worry about such things.
As to the status of the eggs, rabbis have agreed that according to Jewish Law, a husband has a legal attachment to his wife’s eggs. In theory, according to Jewish Law, the resulting offspring could have a claim on the donor’s husband in a Jewish court of law.
While Reform Judaism recognizes that parentage can come from either parent, traditionally most, but not all, rabbis have agreed that if a Jewish woman gives birth to the baby, that child is fully Jewish. The Laws determining a child’s family and religion of origin were established thousands of years ago – long before genetic testing – and so Jewishness is passed from the mother who gives birth rather than from the genetic parents.
Based on these three considerations, the following principles can guide most Jewish couples considering egg donation:
A Jewish donor is not legally required for a Jewish couple. Based on the concerns about accidental incest and the legal status of eggs, a non-Jewish donor may actually be preferable. Accepting this idea can alleviate much of the angst over trying to find a Jewish donor which can be difficult.
If a Jewish woman is chosen, she should be single or married to a non-Jewish man. If she is divorced, she needs a Jewish divorce, including a “Get.”
The process of choosing an egg donor is different for every family. There are an endless number of things to consider in making such an important decision. If observing Jewish Law is a priority for the Intended Parent(s), then finding a Jewish donor is not only unnecessary, but potentially undesirable. Ideally, this will be helpful to some as the pool of potential donors will be enlarged significantly.
- Michael Feinman, MD
Medical Director, HRC Fertility
Huntington Reproductive Center Medical Group
Friday, September 25th, 2009
I was thirty-seven when I finally realized I was ready to be a mom. I felt happy, secure in my job, well-traveled and healthier than I had been in years. When I informed my doctor of my plan, he immediately ran a battery of routine tests, but felt confident that all would be perfect. There were no visible signs, or symptoms, that I would have any trouble conceiving.
About one week later, I got a call from my doctor. He explained calmly that having a baby the traditional way was not going to be possible for me. My FSH was 48 and my eggs were no longer viable. He immediately introduced the egg donation process to me. He was unbelievably kind, patient and understanding. He answered all of my questions and then some.
I needed time to digest what he had said. While I was grateful that I lived in an age where modern technology would allow me to have the experience of carrying a baby, I still needed a bit of time to mourn the loss of not having a child genetically related to me. I had always placed so much importance on being able to recognize a piece of myself (my long fingers, green eyes, thick hair, stubborn will, etc) in my future little boy or girl. This was now gone.
Luckily, I come with an enormous support system of family and friends. They listened to my fears, remorse, etc. until I was finished. It didn’t take me long to realize that my GOAL had not changed. I wanted to be a mom. I needed to be a mom. I was BORN to be a mom!
Immediately I got to work. I scoured the internet for information and began my do diligence. There were so many egg donation agencies to choose from. My mom helped me search through at least twenty of them! My doctor even offered to find a donor for me if I was patient enough to wait at least a year. I’d waited thirty-seven years and couldn’t bear the thought of waiting yet another.
It didn’t take long before I ran into BHED‘s website. I read it thoroughly and it was easy to navigate. It felt classy, professional, safe…right. I called to set up a log in and spoke with Lisa Greer. She was wonderful! I immediately trusted that she knew what she was doing. I was not disappointed when I perused the donors either. They were all beautiful and well-rounded. I felt I couldn’t go wrong. Hence, the trials and the tribulations of the fertility process thus began.
I used two fertility groups. One was near my house on the East Coast. The other was on the West Coast, a doctor that BHED recommended, where my egg donor was located. The embryo was implanted on a rare rainy day in Southern California in early February. I am blessed and very excited to say that I am now expecting my first baby (a girl) in October.
Dr. Michael Feinman of HRC deserves many kudos, but the real heroes are Lisa and Ellie Klein from Beverly Hills Egg Donation. Lisa had a hands-on approach that carried me through many a crisis. All of this was accomplished with a calm, personal and professional touch. Lisa is all about getting the job done, while seemingly having an interior made of marshmallow. Ellie, with her kind heart, was a pleasure to work with. She is competent, compassionate, and returned all of my calls and emails (no light compliment in this busy and imperfect world). To put it mildly, I could have NEVER gotten through this process without both their support and guidance.
BHED is the only place to go for the help you need, both emotional and physical. I thank Lisa and Ellie from the bottom of my heart and will always remember their kindness.
Finally, I owe my egg donor a very, very sincere thank you. I will NEVER forget her and will always be grateful for this baby that will be born this fall!
- Melissa, Recipient