Monday, May 31, 2010

15 Major Findings from "My Daddy's Name is Donor"

For those who do not want to read through this report (although I HIGHLY suggest it -- especially because yours truly is quoted several times throughout the study!!!), these 15 findings alongside the executive summary in the post below will provide you with the basic information discussed in the report.

A more in-depth description and the statistics involved in each of these findings can be found at: FamilyScholars.org under "15 Major Findings"


15 Major Findings:

1. Young adults conceived through sperm donation (or “donor offspring”) experience profound struggles with their origins and identities.

2. Family relationships for donor offspring are more often characterized by confusion, tension, and loss.

3. Donor offspring often worry about the implications of interacting with and possibly forming intimate relationships with – unknown, blood-related family members.

4. Donor offspring are more likely to have experienced divorce or multiple family transitions in their families of origin.

5. Donor offspring are significantly more likely than those raised by their biological parents to struggle with serious, negative outcomes such as delinquency, substance abuse, and depression, even when controlling for socio-economic and other factors.

6. Donor offspring born to heterosexual married couples, single mothers, or lesbian couples share many similarities.

7. At the same time, there appear to be notable differences between donor offspring born to heterosexual married couples, single mothers, and lesbian couples.

8. Regarding troubling outcomes, even with controls, the offspring of single mothers who used a sperm donor to conceive are almost 2.5 times as likely as those raised by biological parents to report problems with the law before age 25.

9. About half of donor offspring have concerns about or serious objections to donor conception itself, even when parents tell the children the truth about their origins.

10. Openness alone does not appear to resolve the complex risks that are associated with being conceived through sperm donation.

11. While a majority of donor offspring support a right to know the truth about their origins, significant majorities also support, at least in the abstract, a strikingly libertarian approach to reproductive technologies in general.

12. Adults conceived through sperm donation are far more likely than others to become sperm or egg donors or surrogates themselves.

13. Those donor offspring who do not support the practice of donor conception are more than three times as likely to say they do not feel they can express their views in public.

14. Donor conception is not “just like” adoption.

15. Today’s grown donor offspring present a striking portrait of racial, ethnic, and religious diversity.


**********************
I personally am most shocked by finding #12 - that 20% of donor offspring revealed that they themselves have been donors or surrogates!!

While I don't doubt the validity of these results, I wonder why that statistic is so high - compared to near 0% for both adoptees and those raised by their biological parents.

My hunch is that due to existential debt, many offspring have been force-fed the ideology that sperm/egg donation is good, and that we must be grateful to be alive, and that sperm and egg are nothing more than biological materials (like blood or organs) and can be given away or sold as such without any thought to what is created, and that love - not biological ties - makes a family, etc. It is this ideology that we are dictated from day one, that it is those who raise us and not "the nice man that helped me/us have you" that is important......it is this ideology and that we are guilted into believing that such procedures are good and that helping infertile people have children is something noble.....it is this that I believe attracts donor-conceived individuals to donating their sperm/eggs or their bodies (in surrogacy) to "help" others have children.

Elizabeth does acknowledge existential debt and how donor-conceived children (and adults) are brainwashed from early on in how to view their own artificial conception.....however she does not infer the staggering statistics related to finding #12 to this phenomenon as well. However, in my dealings with adult offspring over the years, I've met many a number of offspring who have either donated or contemplated donating for this very reason --- all have chosen not to and are relieved they did not go through with it, or are very regretful for doing it later on in life. Again, donor-conceived adults are not immune to the same lures that bring others to donate.....money, helping people, etc.

Many of the offspring who have donated did so before they even learned they were donor-conceived!!! To me, I find this to be a very intriguing fact....as if there must be some sort of subliminal messages being sent from the parents to the child/adult even before disclosure to make them see sperm/egg donation as a noble thing!!!

Finding #11 did not shock me near as much as #12, but I think it goes back to the fact that we as donor-conceived persons, are instructed from a very young age that assisted reproductive technologies and sperm/egg donation are a good thing, and that without them we would not be alive, and therefore we must be grateful to these technologies. As opposed to adoptees and those raised by their biological parents, who have not had this conditioning as such - they are much more apprehensive with ART and the laissez-faire attitudes of the infertility industry.

PRESS RELEASE: "My Daddy's Name is Donor" comparative study released today!!

Today the Institute of American Values and Family Scholars released their breakthrough new study on donor conceived persons.

My Daddy's Name is Donor: A New Study of Young Adults Conceived through Sperm Donation
Co-Investigators: Elizabeth Marquardt, Norval Glenn, and Karen Clark

To read the entire 140-page report: FamilyScholars.org

Executive Summary:

In 1884, a Philadelphia physician put his female patient to sleep and inseminated her with sperm from a man who was not her husband. The patient became pregnant and bore a child she believed was the couple’s biological offspring.

Today, this event occurs every day around the world with the willing consent of women and with the involvement of millions of physicians, technicians, cryoscientists, and accountants. The United States alone has a fertility industry that brings in $3.3 billion annually. Meanwhile, “fertility tourism” has taken off as a booming global trade. A number of nations bill themselves as destinations for couples who wish to circumvent stricter laws and greater expense in their own countries in order to become pregnant using reproductive technologies. The largest sperm bank in the world, Cryos, is in Denmark and ships three-quarters of its sperm overseas.
In the U.S., an estimated 30,000-60,000 children are born each year through sperm donation, but this number is only an educated guess. Nei- ther the industry nor any other entity in the U.S. is required to report on these vital statistics. Most strikingly, there is almost no reliable evidence, in any nation, about the experience of young adults who were conceived in this way.

This study is the first effort to learn about the identity, kinship, well- being, and social justice experiences of young adults who were conceived through sperm donation. The survey research firm Abt SRBI of New York City fielded our survey through a web-based panel that includes more than a million households across the United States. Through this method we assembled a representative sample of 485 adults between the ages of 18 and 45 years old who said their mother used a sperm donor to conceive them. We also assembled comparison groups of 562 young adults who were adopted as infants and 563 young adults who were raised by their biological parents.

We learned that, on average, young adults conceived through sperm donation are hurting more, are more confused, and feel more isolated from their families. They fare worse than their peers raised by biological parents on important outcomes such as depression, delinquency and substance abuse. Nearly two-thirds agree, “My sperm donor is half of who I am.”

Nearly half are disturbed that money was involved in their conception. More than half say that when they see someone who resembles them they wonder if they are related. Almost as many say they have feared being attracted to or having sexual relations with someone to whom they are unknowingly related. Approximately two-thirds affirm the right of donor offspring to know the truth about their origins. And about half of donor offspring have concerns about or serious objections to donor conception itself, even when parents tell their children the truth.

The title of this report, My Daddy’s Name is Donor, comes from a t-shirt marketed to parents of babies who were donor conceived. The designers of the shirt say it’s just meant to be funny. But we wondered how the children feel when they grow up.

This unprecedented, large, comparative, and very nearly representa- tive study of young adults conceived through sperm donation responds to that question. The extraordinary findings reported in the stories, tables and figures that follow will be of concern to any policy maker, health professional, civic leader, parent, would-be parent, and young or grown donor conceived person, anywhere in the world. An extensive list of recommendations is found at the conclusion.

We aim for nothing less than to launch a national and international debate on the ethics, meaning, and practice of donor conception, starting now.

Saturday, May 22, 2010

What do my siblingship DNA test results mean?

One of the most common searches that people find my blog through is siblingship DNA tests. In the past few months I have received MANY emails from adoptees and donor-conceived adults who have gone through a DNA test with a possible sibling - only to receive results they don't really understand. Some simply do not understand what their results mean. Others are confused as to why they are inconclusive. Many others think that there's still a possibly of them being siblings when in reality the results are VERY negative.

Most just want the peace of mind of knowing if they are siblings or not. For most of these people I am able to give them some concrete answers or lead them in a direction to provide them better results.

This shows me that most DNA testing companies are doing a less than satisfactory job at explaining what an individual's results mean in plain language --- a catch that many in the medical field struggle with. Medical information to the layman means nothing if they cannot comprehend what they are being told or reading.

So I thought, rather than talking about DNA testing in general or what all the different numbers mean, I wanted to discuss negative and inconclusive results as well as postives and provide some examples of these types of results as well as how DNA testing companies word results (that make them indecipherable to those without background knowledge).

Below are some examples of actual DNA tests (names have been removed to protect the individuals) with some explanation as to what they mean.


Example #1: Conclusive sibling match w/ both mothers tested.

Below are results of a siblingship DNA test with two alleged siblings and both their mothers that is clearly a conclusive match.


In the above example the two alleged siblings and both their mothers were tested. When both mothers are tested it allows the analyzers to determine which allele at a specific marker came from the alleged shared biological father. If the two alleged siblings share this allele it increases the individual SI for that marker. The results are in the yellow box below. This is very obviously a sibling match as they are 99.8% probability of being siblings. The CSI (combined siblingship index) is over 500, signifying a very strong conclusive result. No questions asked, these two individuals are most definitely half-siblings.

However, as I show below, even in the case where two individuals are most definitely siblings in one test, take away the mothers and those results change dramatically!!


Example #2: Inconclusive sibling test w/ neither mother tested.

If we took the same two siblings in Example #1, but neither of their moms were tested, here's what we would have...


The same two individuals that in Example #1 were surely siblings, these results are questionable, and would be considered inconclusive. They cannot be deemed negative because they are between 0.5 and 1.0 (although nearly on the brink of going below 0.5). Their probability is only at 33% but their odds are 1.95 to 1. That is....they are 1.95 times more likely of NOT being half-siblings than being half-siblings. These odds, while still suggesting inconclusive negative results, are still fairly low.

Odds that are more like 20 to 1, 50 to 1, 100 to 1, are more significantly negative results. A result received like in Example #2 suggests to me that further testing should be done.....especially if one or both mothers were not tested!!!! If both mothers ARE tested, I would suggest a second panel of STR markers (autosomal markers like the ones above...most DNA testing companies can do extra if you request them) or either X or Y chromosome testing (if the two alleged siblings are of the same sex). The latter is preferable for same-sex alleged sibling pairs.


Example #3: Inconclusive sibling test w/ one mother tested.

Here is another example of an inconclusive result. In this case only one mother has been tested (as can be often the case with older offspring and adoptees where one mother may have already passed away).


The results suggest relatedness, as in the CSI is over 1.0 and the probability is over 50%, however it is only over the threshold by a smidgen.

The two examples I showed above provide reason as to why I STRONGLY suggest at least one mother to be tested!!! I know there are many siblingship tests that are found to be inconclusive or downright negative when in fact they may actually be siblings, simply because neither mother is tested. In Example #2, these two individuals, if one of the mothers were tested, their results would have been at 92% probability - enough for the US Courts, but would not have been successful with UKDL's stringent 99% cut-off. In Example #3, had it been possible (one mother was deceased), a further test taking into account Sibling 2's mother could possibly have provided these two individuals the peace of mind of knowing that they were or were not truly siblings. I suggested further STR marker tests for these two.

It's this probability and odds that confuse many people, and are what constitute the majority of questions I receive. Remember: Siblingship tests are based on a prior probability of 50%. This means that 50% probability is the starting point and and results that lean towards being positive will raise that probability above 50% and results that lean towards being negative will lower that probability below 50%.

Some people are confused and this that a probability of say 20% means the probability of two individuals being siblings picked from random - i.e. 20% with zero as the starting point. This makes a 20% probability sound relatively supportive. However, when a siblingship test is being conducted, they are already under the assumption of being possibly related and not random individuals, thus the prior probability is 50% (there's a 50-50 chance that they are or are not related). Therefore, a probability of 20% is NOT good.


Example #4: Conclusive negative sibling test w/ both mothers tested.

Below is a conclusive negative test, with not questions asked these two individuals are not related at all.


In this example these two individuals are conclusively not siblings. With results like these it would be nearly impossible for further testing to provide anything but similar negative results. The combined siblingship index is waaaayyyy below 1.0, and the odds are over 1,000.


I hope these examples and their explanations have helped many of my readers and those that find my blog for these questions, to better understand your results, and have more confidence in what they mean. As always, please email me if you have any further questions or would like me to take a look at any results and provide a better understanding into what they mean.

Sunday, May 16, 2010

Stolen gametes....sounds like baby trafficking to me

So I read on the AmFOR registry today of a woman seeking information regarding an incident almost 20 years ago involving her getting a hysterectomy and the doctor stealing the ovaries and selling them....at least that is what I am inferring from her post.

While I do not have any proof or further information regarding this exact situation, it made me think of what could really be going on illegally in the infertility industry. The industry has been famous for being unethical and pushing lies and deceit. I suppose if we think in this manner, it would not be unusual to believe that this same industry would work in more illegal ways to make money.

The beginnings of donor conception began with deceit and what would likely today be considered illegal -- i.e. performing a procedure on a patient and not informing the patient of what was done. So if that is how the industry was founded, I would not be surprised if they've found new more novel ways of continuing this tradition. A woman goes in for a partial or full hysterectomy. The doctor removes the ovaries, yet instead of simply destroying them (or whatever they do with them after they are removed) he decides he's going to extract the eggs and sell them or use them in his own infertility practice.

This patient, who believes she has simply had a hysterectomy has no clue that her eggs, her biological children, are being implanted in other women.

I know it seems very sci-fi and ridiculous, but take a minute to think about the mentality of the infertility industry....... Do they care about their patients? NO. Do they care about the offspring created? NO. Do they care about the donors and their rights? NO. Do they care about making money? YES. So now the doctor has perfectly good eggs harvested and does not even have to pay the woman for her "services", and he can charge someone outrageous IVF fees to implant them and make even more money!!

They would probably shake it off as that woman was being altruistic (which one cannot be if one does not know of the situation) and that the children will never be told who the donor is so the woman will never know and the social parents will never know, and all's fair in love and war! And everyone is so HAPPY!!!!

I ask my readers: What are your thoughts on this possibility? Do you think it's happening or do you think this is all made up and over the top? What should be the legal implications involving non-consensual gamete donation? Do you think that males could be taken advantage of in the same way?

Saturday, May 8, 2010

Donor Offspring DNA Database - UPDATE!

Good news!! I learned the other day that we may have found someone to help us create a database to store and compare donor-conceived offspring and donors for sibling and paternity matches! Even better is that he is another DC offspring...Adam, an Aussie offspring has a background in IT and programming and is interested in helping us devise a program that would enable registered users to upload their CODIS markers (the 15+ markers used in siblingship and paternity DNA testing) and find potential matches that score a siblingship index over 1.0 (50% probability of relatedness).

Again, even though this database is not yet created I am happy to take any offspring (or donors) DNA results and add them to our growing list which I will manually scan for matches for the time being. Remember, the more people in the database means the more likely you will find a match! Like UKDL, this is going to take years likely, before we actually find success, but Damian and I are confident that with such technology and accessibility available, the chances of adult offspring finding relatives will be greatly increased!

Please email me if you are interested in contributing your DNA results.

PLEASE NOTE: We are not capable of performing the actual DNA test!!! Email me and I'd be happy to recommend several DNA testing companies that I have personally worked with.

What we are trying to provide is a way to eliminate the unnecessary multiple-testing of individuals trying to find their donor families.

For example, I did 3 paternity tests (all negative) and one siblingship test (negative), but I received results for each of these tests. My mom was tested on the siblingship test, which provided her alleles and thus by process of elimination the allele inherited from my donor was deciphered. When I was contacted by my [now] half-sister's mom with her DNA tests from 2 paternity tests, I compared both of our results and was able to determine with considerable accuracy that she and I held a probability of being siblings upwards of 90% - and this was with several marker alleles missing in the original tests! This led us to perform a true professional siblingship DNA test. When the results came back we were considered sisters with 99.8% probability!

We want to provide a way to save individuals money, time, and heartache, by performing the calculations on previous DNA samples to determine if there is even a chance in hell that the two said individuals are related. We promise to inform any individuals that score over 50% probability (combined siblingship index of 1.0) of their potential match. This is because we understand that siblingship tests are inherently inconclusive, and it should be up to the said individuals to determine if they need extra testing, or want to exclude the possibility of being siblings.

See previous posts regarding what DNA tests are in general (Whatcha gonna do with all that junk in your...DNA), and more about siblingship tests and what all the numbers mean (To test or not to test...DNA half siblingship tests, and Even more about DNA half-siblingship tests)

Remember: United States Court of Law states that a probability at or above 90% is considered admissible in court. The UK DonorLink holds a much stricter view, at 99% probability. Thus, individuals who are a part of the UKDL project may in fact have a match with whom they have NOT be informed of!!!