Comments on "The Children of Donor X"

By Harvey J. Stern, M.D., Ph.D.

An article in the April 2008 issue of 'O' (as in Oprah) Magazine, titled "The Children of Donor X" follows the stories of several families that used the same anonymous sperm donor. All of them have had medical issues that they attribute to genetic defects from the sperm donor.

The author makes the assumption that the conditions described in these children are due to a single genetic defect that “the donor must carry”. She failed to consider that there are other possibilities that are more likely. First of all, the children described in this article do not have the same disorder. Dylan carries a diagnosis of Asperger syndrome, a high-functioning form of autism. Joseph, a diagnosis of pervasive developmental disorder-not otherwise specified (PDD-NOS). As noted in the article, this diagnosis is a catchall for many children “on the autistic spectrum” who have some, but not all of the features of classical autism. It is likely that this designation encompasses many different conditions with different causes, each having some of the behaviors described as “autism”. Victor, with speech delay and eating problems appears to have oro-motor hypotonia which has subsequently resolved. All of these are very different conditions which are unlikely to be caused by a single “faulty gene” inherited from the donor.

What else, then, do we know about these children that could shed some light on the cause of their disability? Joseph was part of a triplet pregnancy. We don’t know the details of their birth but it was likely that they were premature. The incidence of children with developmental disability is many-fold higher in multiple pregnancies, some of this can be attributed to prematurity. David, another PDD-NOS was born three months premature and had bleeding in the brain. Dylan was born by emergency C-section. It is very likely that these medical histories contributed to the developmental disorders in the children.

It is assumed that since the families of the mothers had no history of autism, that the donor must be the culprit. A man with a significant family history of developmental problems is very unlikely to be selected as a donor. Most cases of developmental disability/autism are believed to be caused by genes from both parents along with some environmental factors or triggers.

The author of this article failed to consider the medical facts as they are known today, and instead went with a sensationalist approach. Drawing conclusions from medical problems that may or may not have a common thread is a media ploy, which should be brought to the attention of consumers.

Beating the Biological Clock

by Maureen Hanton, B.S., R.N., M.P.A.

Source: Management of the Infertile Woman by Helen A. Carcio and The Fertility Sourcebook by M. Sara Rosenthal

The biological clock: We've all heard about it, most of us wonder about it and nowdays, a few seem to fly in the face of it. It seems that every time we turn around, a new forty or fifty-something celebrity is pregnant. Their pregnancies give hope to many who are trying to have a baby or who plan to put-off having a baby until later in life. What we don't know is how many of these celebrity moms have used Advanced Reproductive Technologies (including often donor egg) to get pregnant, or how many others are currently trying and are not successful. Unfortunately, this can create a false impression about the real odds for a woman in her late thirties or forties to get pregnant.

The notion of the biological clock is perceived by some to be an outdated and sexist message. It is not fair, it is not politically correct, but it is true: the older women get, the harder it is to become pregnant. The decline in fertility is pronounced past the age of 35 and when a woman reaches 40, the drop is even more drastic. Of course there are exceptions. (Some of us have heard about a woman whose grandmother delivered at 49 or who worked with a woman who unexpectedly got pregnant in her mid-forties.) But these are very much the exceptions, not the rule.

As a nurse who works in the field of infertility, I can say without a doubt that the most upset patients I see are those who never knew the facts about their own fertility, therefore they never had the opportunity to make an informed choice. No one can tell another person when the time is right for her to have a child. As long as you have the facts, you are empowered to make the right choice for yourself.

Here are some of the things my patients wish someone had told them years ago: Putting off pregnancy until your later thirties or forties may make it more difficult to get pregnant or require using aggressive treatment to get pregnant. It may mean you won't be able to conceive using your own eggs. If you have been trying to get pregnant for one year, or 6 months if you are over 35, it is best to see a fertility specialist for evaluation (A fertility specialist is board-certified in both Obstetrics and Gynecology and the subspecialty of Reproductive Endocrinology. These highly trained physicians are qualified to treat reproductive disorders in both men and women.) The longer you wait to seek treatment, the more aggressive and costly the treatment becomes.

The good news is that most couples who seek infertility treatment will eventually have a successful pregnancy. And if you think you've missed your window of fertility entirely, donor egg may be the key to fulfilling your dream of motherhood. Donor egg is successful for most women.

You can beat the clock if you know the facts!

Infertility Treatment in Developing Countries

The European Society for Human Reproduction and Embryology (ESHRE) will announce in late March a program to provide infertility treatment to women in developing countries. These services will be offered in conjunction with family planning, prenatal and women’s health services for new mothers.

The drive to provide infertility treatment to all women is part of the larger effort to recognize reproductive rights as a basic human right that began with the International Conference on Population and Development held in Cairo in 1994. This effort was bolstered by a number of international agreements such as the Universal Declaration of Human Rights and a host of other international covenants and conventions.

Although providing infertility services in countries with high birth rates and poverty seems counterintuitive, the effort to establish a woman’s reproductive rights is part of the overall objective of raising the economic and social status of women. This, in turn, should result in better family planning and investment in children and families. One fifth of people in developing countries express an interest in family planning and over time birth rates have an inverse relationship with per capita income.

Infertility is a serious social problem in developing countries. The incidence of infertility is also higher in these countries, up to one third of the population in parts of Africa. It is not uncommon in the developing world for there to be a severe stigma attached to infertility because of traditional society expectations and the fact that children are often viewed as vital to family productivity and the care of elders. In the developing world infertile women (or women in infertile relationships in which they might not be the cause) suffer from social ostracism, disinheritance, divorce and even violence. In parts of India 70% of infertile women report being punished by family members and 20% report being the victims of violence. Reproductive rights constitute a significant part of raising the status of women.

Oprah Show on Sperm Donors Misses the Positive View

The February 8, 2008 broadcast of the Oprah Winfrey Show aired a segment on sperm donation. The show included as guests three donors who had agreed to be identified to now grown children who had been conceived using sperm that they had donated to sperm banks many years ago. The show also included children conceived through sperm donation who wanted to find the identity and to establish relationships with the donors who had provided half of their genetic makeup. The show also included a film of two half siblings, brother and sister, who met for the first time and who later joined the show live. The program did not include any representatives from sperm banks or lawyers representing the rights of anonymous donors. Obviously the show did not include any of the many former donors who wished to remain anonymous.

The show presented a skewed view of the varied interests involved in this issue and therefore conveyed a rather one sided picture of this topic. The show seemed to indicate that all Donor Insemination (DI) recipients and offspring want to meet their donor yet there are many who want the donor they used to remain anonymous forever. It is important not to breach that donor anonymity just because someone wants to know their donor. To do so would violate representations and contracts made by the sperm bank to its anonymous donors and parents who used an anonymous donor on condition of anonymity of the donors. In response to the desire of some to have known donors, most major cryobanks have a class of donors who have agreed in advance to have their identities and contact information released when donor-conceived children reach age eighteen. It is interesting that those who use donor sperm still overwhelmingly prefer to use anonymous donor sperm, even when offered the choice of donors who are willing to be known. Also in countries such as the United Kingdom that now require that all donors be identified, there is now a severe shortage of sperm donors. Breaching anonymity would have a negative impact on those women who wish to use this approach to parenting now or in the future.

The program also left the impression that sperm donation is unregulated and that recipients are blind as to the medical histories of the donors. Most sperm banks, however, provide more information on their anonymous sperm donors than any person could reasonably obtain about their spouse. Medical histories go back three generations. Medical tests include a battery of sexually transmitted diseases (STDs), genetic diseases and physical exams looking specifically for things that can be passed to a recipient or child. The FDA regulates a huge part of this process, as they do for blood donation and organ donation and the standards are very high. There are childhood pictures, some have adult pictures, and detailed interests, and audio interviews, personality tests and the list goes on and on. The only thing missing is the identifying information and the opportunity to make a physical connection with the sperm donor. The medical and family information are there. Parents have the freedom to share or not share this information with their children; from the nature of the conception to the details of the donor’s history. Society protects this reproductive freedom.

To expose donor identities is not appropriate nor is it reasonable to encourage children from donor insemination to find a ‘daddy’ as they look for their donor. This was clearly the case in several situations on this show. Donors offered donor sperm and were not active partners. The law does not and society should not treat them as if they were. As one donor said on the show, when he donated sperm he saw no difference between that and donating blood. At the time all these children on the show were conceived, sperm donors were available to offer women the means to have these very much wanted children. Oprah did little to celebrate this reality as every child on that show would not have existed except for the availability of sperm donation.

March is Women's History Month

March is Women’s History Month. Certainly, the sweeping advances in infertility treatment during the last thirty years have changed women’s history – and our futures – immeasurably. The first IVF or “test tube” baby, Louise Brown, was born in England on July 25, 1978. That news made headlines around the world, but since then, millions of children have been conceived with the help of IVF, donor eggs, ICSI (intracytoplasmic sperm injection), NSA (non-surgical sperm aspiration) and other advances that followed the development of IVF. Now, thanks to these and other treatments, most infertile women can become pregnant if they are properly diagnosed and treated. These advances certainly make this the best time in the history for women who want to have a child!

Disclosure Issues in Parents Using Third Party Reproduction

By Anne-Marie O'Brien, MSN, NP

I am a Nurse Practitioner at GIVF and for four years had the pleasure of working very closely with our patients who had made the decision to use the assistance of third party donation to create their family. For these couples one of their biggest concerns was the issue of whether or not to disclose to their future child. As a member of the health care team, I was often asked for my opinion. I felt it was my role to guide them in the decision-making process rather than give them a hard and fast answer. It was difficult to watch and listen to these patients worry about their future relationship with their child and fear that they would make a mistake. I wanted to help them realize that their choice to become parents was one of the noblest endeavors that they would undertake in their life and that they would find the right answers for their family.

This is why I was especially pleased to read a recent article by Shehab et al. in the January 2008 issue of Fertility & Sterility entitled, "How parents whose children have been conceived with donor gametes make their disclosure decision: contexts, influences, and couple dynamics". The researchers conducted in-depth interviews with 141 couples. According to the authors, the couples in the study found individualized counseling to be helpful, especially "when delivered without judgment or directive personal opinion". For these couples; however, peer support was found to be the most valuable. The authors observe that it is perhaps because this type of support not only reduces the sense of stigma and isolation these couples often feel, but also provides them with a forum to share and learn from others in their same life situation. The study’s findings provide helpful insight to patients as well as health care providers, and I would highly recommend this article to anyone involved in the third party donation process.

Sperm Banking Background Fundamentals

1. Regulation: Sperm banking, which includes the screening and testing of sperm donors, is a regulated activity, contrary to the understanding of many. Effective on May 25, 2005, the U.S. Food and Drug Administration (FDA) commenced its regulation of reproductive tissue banks (21 CFR Part 1271). The FDA’s regulatory focus includes standards for the screening and testing of donors and proper record keeping procedures. Since these regulations became effective, all major cryobanks have been audited annually for compliance by the FDA through on-site inspections.

In addition to federal regulation, most major cryobanks are also licensed and inspected by several states, particularly New York, California, and Maryland. Licensing by state agencies began as early as 1992.

Although not having the force of law, cryobanks also have conducted operations consistent with the guidelines of medical groups such as the American Society of Reproductive Medicine (ASRM) and the American Association of Tissue Banks (AATB).

Notwithstanding the regulatory oversight of government agencies and professional associations, most cryobanks have exercised self-regulation consistent with the highest medical and ethical standards. In fact, most major cryobanks were performing more than all the tests required by the FDA several years prior to the FDA’s effective date.

2. Statistics: The popular press often cites the number of anonymous donor inseminated births per year at 30,000. Although no industry-wide statistics are maintained, a more accurate figure would be less than 5,000 donor inseminated births per year. (This is calculated based on 1.5 vials per insemination, a 10% pregnancy rate per cycle, and a 20% spontaneous abortion rate.) Similarly, the total number of anonymous donor inseminated births is estimated to be less than 120,000 over the last 30 years.

3. Limitations on Donor Distribution: All cryobanks use some type of standard to limit the number of births attributable to any one donor. One standard used is the guideline of the ASRM, which is currently 25 births/donor per 800,000 (1 birth per 32,000) in a circumscribed population, i.e., the population surrounding the location where donations are collected. Another method to limit the number of donor inseminated births is to establish an absolute number of births per donor, e.g., 10. Donor inseminated births are further controlled because most cryobanks require that donors participate for only six months, which limits the number of units that can be produced and distributed. Notwithstanding the standard used to limit donor inseminated births per donor, cryobanks do not limit the number of births within a family unit, thereby permitting full siblings via donor insemination.

4. Donor Information: As part of the screening process to determine donor eligibility, cryobanks gather a great deal of family (3 generations) and personal medical history. In addition, while donating, donors are given physicals every six months, and tested for a wide array of infectious diseases at least every six months. Most cryobanks also perform chromosome analysis (karyotype) and test for certain common genetic diseases such as cystic fibrosis and genetic conditions common to certain ethnic groups (e.g., sickle cell for African Americans). Donors are interviewed extensively to check for consistency and accuracy of reported information. In addition to the screening and testing of donors used to establish medical eligibility to donate, cryobanks also offer other “soft” information on its donors such as childhood photos, personality tests, audio interviews, staff impressions, and personal profiles. It has been said that the amount of medical and personal information on an anonymous donor greatly exceeds the knowledge most people have of a known partner.

5. Donor Anonymity: The maintenance of donor anonymity is essential to the availability and quality of donors. There are those who believe that the identity of all donors should be known, and such disclosure is, in fact, required in a number of countries such as the United Kingdom and Australia. But the consequence of this requirement is a severe donor shortage, since most donors do not want to be known. However, the industry is sensitive to the desire by some for “known” donors as an alternative to anonymous donors. Consequently, now most major cryobanks offer donors who have agreed to have their identities disclosed to their offspring at age eighteen. On the other hand, many more want their donors to remain anonymous, and therefore cryobanks do not think it is wise to destroy the anonymous status for ALL donors. To do so would breach the contracts and representations made to donors and to those who selected an anonymous donor, and eliminate for a large segment of potential users of sperm donors the much wanted option to select a forever anonymous donor.

Effect of vaginal lubricants on sperm motility and chromatin integrity

By Michelle Ottey, Ph.D.

Recent Publication of Interest from Fertility and Sterility Vol. 89, No. 2, February 2008:

Effect of vaginal lubricants on sperm motility and chromatin integrity: a prospective comparative study by Ashok Agarwal, PhD et. al.

This study was conducted in order to determine the effect of commercial vaginal lubricants on sperm. Vaginal lubricants are commonly used to treat vaginal dryness and/or pain during intercourse, particularly by couples attempting to become pregnant.

There have been numerous studies over the years that have reported decreased sperm motility and overall functionality caused by commercially available lubricants. This study looked at FemGlide, Pre~Seed, Replens, and Astroglide. They evaluated both sperm motility and sperm chromatin integrity in 12-13 donors per test.

Sperm motility is the measure of the number of motile or moving cells. This measure is important because it affects the journey of the sperm through the cervix. Sperm chromatin integrity is a measure of accumulated damage to the chromosomes in the sperm affecting the ability to successfully fertilize and/or progress through development.

The study found that sperm motility was significantly decreased after 30 minutes exposure to Replens and Astroglide. FemGlide also demonstrated a decreased motility, but was not as dramatic as that observed from the other lubricants. Pre~Seed did not appear to have an effect on sperm motility when compared to control samples. FemGlide appears to be the only lubricant in this study to have a detrimental effect on sperm chromatin quality. And although they did observe some chromatin damage in samples exposed to Pre~Seed, the numbers were not statistically significant.

The authors state that they believe that Pre~Seed intimate moisturizer’s lack of negative effects on sperm motility and chromatin quality could be due to the close to physiologic pH and formulation. They believe this product may be the most effective and safe lubricant for use in treating vaginal dryness. They acknowledge that a larger scale study needs to be done to support their conclusions.

GIVF does not endorse any specific lubrication products. This post is a summary of a published study for informational purposes only.