Complicating Conception: The Desires of Parents and the Rights of Children

by  Christopher White


{An interesting 2013 article about sperm donors and the difficulties they create for their offspring in establishing familial ties (emphasis others]- ED}

Infertile parents who desperately seek a child might see anonymous sperm donation as the solution to their fertility difficulties. But as the stories in the Anonymous Us collective reveal, the difficulties faced by donor-conceived children are just beginning.

In the new film Delivery Man, Vince Vaughn plays David Wozniak, a man who discovers that he’s the biological father of 533 children—all conceived through his anonymous sperm donations. Now, almost two decades after his “donations” (from which he netted over $20,000), 142 of those children have filed a lawsuit against the sperm bank to reveal his identity. They want to know their biological father, gain access to their medical histories, and discover their roots.

 The film is fictional—but it’s not far from reality. In 2011, the New York Times reported the story of one donor with 150 confirmed offspring. There have only been a handful of major studies following children who were conceived via anonymous gamete donation, yet certain key trends are emerging as they reach adulthood. Although these adult children have mixed opinions about the means in which they were conceived and the limits of such technologies, they’re almost all united in one belief:  anonymity should be removed from the equation.

Readers of Public Discourse are already familiar with Alana S. Newman, founder of the Anonymous Us Project and, most recently, editor of Anonymous Us: A Story Collective on 3rd Party ReproductionIn this volume, Newman compiles over one hundred stories of donor-conceived individuals who, like the kids in Delivery Man, long to know their biological parents.

“While anonymity in reproduction hides the truth,” writes Newman, “anonymity in storytelling helps reveal it.” Accordingly, these stories offer a glimpse into the reality faced by many donor-conceived children. Some contributions are angry, others are conflicted. All, however, reveal a deep loss. Consider just a few of the sentiments shared within the volume:

 “Who are you to deny me half of my family tree—branches rich and strong with stories I may never be told? Who are you to give away my heritage, knowing it will be replaced with something false?

 “I am a human being, yet I was conceived with a technique that had its origins in animal husbandry. Worst of all, farmers kept better records of their cattle’s genealogy than assisted reproductive clinics … how could the doctors, sworn to ‘first do no harm’ create a system where I now face the pain and loss of my own identity and heritage.”

 “As a donor-conceived person, I have a sense of being part of an underclass … Having a child is a privilege not a right.

There’s also the story of a young donor-conceived adult who was raised by a single mother.

After her mother’s early death, she’s since been desperately searching for her donor father and potential other siblings in hopes that she might have some remnants of a family to piece together.

Another young woman tells of her own struggle with infertility when she and her husband were trying to conceive. After telling her mom of their difficulties, her mom casually suggests artificial insemination—informing her for the very first time in her life that this was the means in which she was brought into the world. Countless other stories capture the experience of donor-conceived children finding out their origins after their social father is diagnosed with a major medical condition—only to be told not to worry because it won’t affect them, since they’re not actually biologically related. The grief stemming from the medical difficulties is then compounded by an unexpected family identity crisis.

The entries included in the Anonymous Us collective aren’t just limited to the testimonials from donor-conceived children. Stories from medical providers, sperm and egg donors, and parents who chose to conceive via this method fill the pages of these raw and emotional testimonials.

While some entries are an effort to justify past decisions, others speak with great candor about the regrettable outcomes of such a practice.

One Italian sperm donor reflects on the experience of his own family life and laments that the children whom he helped bring into this world won’t be able to have similar memories:

 “I have only a sister, but many, many cousins … and every time I meet them and all the relatives, we love to talk about similarities in the features, the body, the way we talk and move, because this gives us a stronger sense of identity and it is beautiful to have such a 'big family' … I hope this little story can help people in learning from the mistakes of the past.”

 In another entry, a former egg donor regrets the fact that she’ll never be able to meet her son or daughter, admitting that she only participated in the practice because of the lucrative financial incentives attached to selling her eggs: “I don’t even remember what I spent the money on,” she writes. “Debt, dresses, and dinners probably. I’d give you $10,000 this very second to meet my kid. Biggest oops of my life.

In the United States, there’s an open and unregulated market for gamete donation. Unlike Canada and most European countries, which limit the number of times a man can sell his sperm and have mandatory database registries where donor children can access their biological parents' medical histories, the United States enforces no such regulations. This lack of regulation is due, in large part, to legislators’ failure to listen to the voices of donor-conceived children. “How can we as a nation make wise decisions about family structure, third-party reproduction, and gamete donation,” asks Newman, “without the participation of and insights from those who have been most directly affected by these practices?”

Just how many donor-conceived children are born each year is anyone’s guess, due to negligible tracking and regulation. At a recent conference for fertility-industry attorneys, I listened to a prominent children’s psychologist (who favors the practice of third-party reproduction) speak about the potential psychological issues donor-conceived children might face. In a moment of candor, she admitted, “We never thought about the future families. We only set out to fix the infertility.

And this is precisely the problem with donor conception: the desires of the parents always trump the needs of the children.

The stories in the Anonymous Us Project and Delivery Man demonstrate the real suffering and loss felt by donor-conceived children. Yet, in considering the problem of infertility, we also encounter countless couples who experience great distress and grief as a result of their inability to conceive. Infertility is a deeply painful and often isolating experience for millions of couples.

The CDC estimates that 10 percent of women trying to conceive are infertile; hence the increasingly common decision to pursue assisted reproduction. This drive to have children is understandable; social science research reveals that the presence of children in a marriage leads to greater happiness, increased financial security, and a lower likelihood of divorce.

We must acknowledge the painful truth that, as infertile couples seek to remedy their suffering through third-party reproduction, they are unwittingly inflicting pain on their future children.

Eventually, those children must wrestle with the circumstances surrounding their conception. In aiming to satisfy their very natural desire for offspring, infertile couples go to great lengths to create children who are destined to experience complex crises of identity and purpose.

This transgenerational suffering precipitated by the experience of infertility is one that must be met with compassion, to be sure. Yet we must also offer a corrective that acknowledges the limits of desire and love.

Rather than supporting an inward focus on one’s own pain and loss from infertility, we ought to encourage infertile couples to give deep consideration to the suffering that children conceived from these technologies may face. Moreover, rather than privileging one’s own desire for a child as the ultimate goal, we must encourage  a preemptive compassion and empathy that should motivate infertile couples to refrain from pursuing such means.

 In one of the most revealing entries of the Anonymous Us collective, a former sperm donor criticizes the industry he profited from: “I now realize I was wrong. This whole system is wrong. Please forgive me, but I am not your father, nor did I ever intend to be.” Similarly, in one of the scenes from Delivery Man, when one of the donor children discovers that Wozniak is his biological father, the son seeks to spend time with him. Annoyed by this prospect, Wozniak brushes the kid off, telling him that he has a real family to attend to.

Infertile parents who desperately seek a child might see anonymous egg or sperm donation as an imperfect, though still acceptable, solution to their fertility difficulties. But as the stories in the Anonymous Us collective reveal, for the children conceived through these technologies, the difficulties are just beginning.




[Note:  “They want to know their biological father, gain access to their medical histories, and discover their roots.  ... for the children conceived through these technologies, the difficulties are just beginning.” 

Indeed, their difficulties are just beginning.  We’ve been told for decades that “the” Human Genome Project (HGP) had decoded all the genes of “the” human chromosome, only to learn recently that they missed over half of them -- not to mention that there is no such thing as “the” human genome (every human being’s genome is unique), their sample was a pool of samples from people all over the world, that they admit that they only decoded the “extrons” (about 15-2-% of the total number of genes), that they skipped the “junk DNA” genes in the “intron” (about 85% of the genes), that they only decoded a nuclear chromosome -- yet the human genome is defined as all the DNA in a human cell, both nuclear and extra-nuclear, e.g., mitochondrial, etc.  So how could “the” HGP data -- which is now admitted to be erroneous -- be used as the “blueprint” for any genetic research experiments or as the source of knowing/understanding any human genes, including those that donor-conceived children are seeking?  Can’t. (See:  http://www.designntrend.com/articles/9627/20131214/never-seen-before-secret-dna-code-unusual-meaning-scientists-find.htm).

And more genes than simply those from a man’s sperm or a woman’s “egg” could be involved.  Consider, simply, the epidemic rise in the use of genetic engineering and the desire for “designer babies” (genetically designed to “prevent diseases”, even down through the generations, e.g., the recent concerns about “3-parent” embryos -- or genetically designed to produce children with certain hair and eye color, etc.), eugenics agendas of many types, etc.  Simply put, “genes” are “genes”, and will act as genes wherever they are injected;  any “foreign” genes injected into the “infertility” or “disease” pictures complicate the donor-conceived children’s future pain. 

What foreign genes?  Producing :desired” genetic traits for their children would require genetically engineering the sperm, the “eggs”, both, or the embryo resulting from fertilization.  Where do those genes come from that supposedly would express the desired traits in the children?  Usually from early human embryos reproduced by couples who already express those traits.  Those foreign genes must then be inserted into the sperm, the “egg” or the “embryo” by means of a vector -- usually a virus or a bacteria -- both of which have their own genes.  If iPS stem cells are used -- i.e., iPS cells can be coated with a tetraploid coating, and then implanted, and the iPS embryo can be allowed to develop up to the formation of germ line cells (primitive sperm and “eggs”) in the embryo, then those germ line cells are used in fertilization to reproduce a new embryo (which embryo would retain the foreign genes used during the iPS deprogramming process, as well as retain those from the tetraploid coating derived by fusing two embryos together to make the “coating”).  This technique requires foreign genes, in addition to the ones already mentioned, called “transcription factors” -- pieces of foreign genes derived from early human embryos.  Few if any records are kept concerning the various sources of these genes.  And many of these “splices” of genes are already known to cause tumors.  No one is quite sure where any of these genes land once injected;  no one knows for sure what products any of these genes make, or if all of this manipulation causes serious mutations in any of the genes involved, etc., etc.  How could donor-conceived children ever find out about any diseases they are genetically predisposed to now?   No one knows what serious diseases these genes could cause.  Very few if any serious records are kept concerning the “sources” of all these genes.  So who’s the “biological donor” now?  The man whose sperm was used and genetically modified?  The woman whose “egg” was used and genetically modified?   The embryo who was genetically modified?  The embryos from whom the “desired” foreign genes are derived that are injected into the sperm, “egg” or embryo?  The foreign genes from the viruses or bacteria vectors used?  The foreign genes that produce the transcription factors used?  The embryos fused to make the tetraploid coating, or the iPS embryo produced.  How many “biological” fathers and mothers could such donor-conceived children end up with?!

And why was the research that should be required to answer these critical questions never performed before experimenting with vulnerable infertile patients?  ...  And why are so many women (and men) infertile now?  Questions, questions, questions -- with no one giving answers. The article first appeared here. -- DNI]

 





New Ways to Engineer the Germline

by Jessica Cussins


In 1998, a UCLA conference called "Engineering the Human Germline" brought together more than 1,000 people to discuss various emerging technologies and the challenges they faced. Gregory Stock, a co-organizer of the conferencetold Nature at the time that, really, the goal of the event was to make the inheritable genetic modification (IGM) of humans “acceptable” to the public

O
ver forty countries, and multiple international treaties, prohibit IGM due to the profound safety, social, and ethical implications of making permanent changes to the human germline. Opposition to IGM is widespread; the Center for Genetics and Society, for example, has long argued that “the case for allowing it is not compelling, and the potential harms of doing so are immense.” 

Disturbingly, 2013 has seen a deluge of new efforts, more explicit than any since 1998, to ease public opinion towards allowing human germline engineering. 

The big one for 2013, which I have written about before, is mitochondrial replacement. This is a technology that would in theory allow a woman with a particular kind of severe mitochondrial disease the chance to have a non-affected and mostly genetically related child. It would extract the nucleus from one of her eggs and insert it into an enucleated egg from a second woman, and then allow the resulting egg, containing nuclear DNA from the intended mother and mitochondrial DNA from a donor woman, to be fertilized. This crude technique poses severe risks to any resulting child, yet, with both the United Kingdom and the United States currently considering policy changes to allow clinical trials, it seems to be the world’s current forerunner for violating the international consensus against IGM.

But there are other developments worth keeping an eye on. One, a gene editing technique known as CRIPSR, has gotten a lot of attention recently because of its potential for permitting much more specific genetic alterations than can be accomplished with currently used methods. Researchers have had some success in mice and human stem cells, and a company called Editas that just launched intends to investigate and commercialize its human possibilities. Fortunately, the focus of CRIPSR is likely to dwell in the realm of gene therapy for critically ill consenting persons. Unfortunately, some scientists are also touting the possibilities of applying CRISPR to IVF embryos – in other words, of moving ahead to full-fledged inheritable genetic modification.  

It is still too early to know how effective and safe CRISPR could be; so called off-target mutations” caused by its high mutagenic efficiency could mean that the technique would fix one problem, but introduce others. Furthermore, epigenetic changes caused by this technique seem inevitable, and yet would be very difficult to understand or predict ahead of time. However, if it is found to be safe and effective, it would be the most powerful tool for producing “designer babies” the world has seen to date. Unlike mitochondrial replacement, with its crude wholesale swap of one woman’s mitochondrial DNA for another’s, CRISPR could make it possible at least to try to alter specific genes for specific purposes.

Another procedure that was recently in the news is a method to genetically modify sperm. Scientists from the Royal Veterinary College in the United Kingdom used a viral vector to insert genetic material into mouse spermatozoa and found that it was still functional three generations later. However, while this technique introduces another method for creating transgenic animals, it seems that any human applications are vague and hypothetical at this point.

All of these techniques are biologically extreme processes that carry unknown impacts. But it’s important to remember that, even if they can be made to work, none of them alleviate the illnesses of people alive today. Instead, they are proposals for creating new people. They are often justified as a way to help couples who desperately want a genetically related child, but are concerned about passing on a debilitating illness to their children.  ...

It remains to be seen how the policy cards will fall on these novel attempts at IGM, and whether technical limitations or the impressive outpouring of criticism from varied sources around the world this year could be enough to fight back this particular wave of enthusiasm.


Previously on Biopolitical Times:





[Note:  Again, what is rarely mentioned in terms of the injected genes and resultant damaged immunology of the future children involved, it is not just the foreign “desired” genes that are passed down through the generations, but also the foreign genes from the viral or bacterial vectors used, the genes that produce the transcription factors used (e.g., Oct4), and actually any other foreign genes the researchers might “desire” for experimental purposes.   What about all those genes and how they might function in future generations of human beings?  How do those foreign genes interact with the future children’s normal genes?  Where do those foreign genes end up after they’re injected?  They don’t know.  The current epidemic in scientific fraud is finally being met by calls even within the various scientific fields for turning such cases over for police work and jail time.  Perhaps researchers in genetic engineering/synthetic biology/nanotechnology who damage future generations of human beings because of their fraud and lack of professional credentials should also be held to legal accountability for their actions.  See: 

--  [Junk DNA] Never-Seen-Before Secret DNA Code And An 'Unusual Meaning'-Scientists Find, at: http://www.designntrend.com/articles/9627/20131214/never-seen-before-secret-dna-code-unusual-meaning-scientists-find.htm  

--  Richard Smith: Should scientific fraud be a criminal offence?, at:  http://blogs.bmj.com/bmj/2013/12/09/richard-smith-should-scientific-fraud-be-a-criminal-offence/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+bmj%2Fblogs+(Latest+BMJ+blogs)  

--  Call the cops;  The long arm of the law has reached into an investigation of alleged scientific misconduct, at:  http://www.nature.com/news/call-the-cops-1.14288


See also: 

-- 'Designer Sperm' Inserts Custom Genes Into Offspring, at:  http://www.sciencedaily.com/releases/2013/12/131202171926.htm

--  Scientist create 'robotic sperm' to help with fertilisation and drug delivery, at:  http://www.independent.co.uk/news/science/scientist-create-robotic-sperm-to-help-with-fertilisation-and-drug-delivery-8999796.html;  Abstract at:  http://onlinelibrary.wiley.com/doi/10.1002/adma.201302544/abstract .

--  News from Abroad: EPO Clarifies Extent to which Methods Involving Use of Human Embryos Are Excluded from Patentability, at:  http://www.patentdocs.org/2013/12/news-from-abroad-epo-clarifies-extent-to-which-methods-involving-use-of-human-embryos-are-excluded-f.htmlThe article first appeare

The article first appeared here. --  DNI]