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The Secrets of Fertopolis: Should Sperm and Egg Donors Have to Disclose Their Identities?

The Secrets of Fertopolis: Should Sperm and Egg Donors Have to Disclose Their Identities?

sperm donor, egg donor, donor registry, antidote, william heisel, reporting on health
More than 1 million people have been born in the US from donor eggs or donor sperm. If they were all brought together in one place, they would represent more people than all but eight of the largest cities in the country, making them bigger than San Jose, Jacksonville, Indianapolis, and San Francisco. You could call it Fertopolis.

Yet, donor-conceived people are different in one key respect than most people in those cities. They can't find out anything about at least one of their biological parents.

This is starting to change. Two people who have been monitoring this change closely are Wendy Kramer and Naomi Cahn. Antidote interviewed Kramer, the founder of the Donor Sibling Registry, for one of our first posts in 2009. Now, she and Naomi Cahn, a George Washington University law professor, have written a post for Antidote about the way life for some of the citizens of Fertopolis is about to radically change.

A new law in Washington State went into effect last month that allows donor-conceived people access to information about their biological parents. The law gives us a prime opportunity to think about what donor-conceived people really want and deserve.

The law gives them some of what they want. How do we know that? The largest, peer-reviewed study to date of donor-conceived people has just been published in the journal Human Reproduction. Its findings, from researchers at California State University - East Bay and the Donor Sibling Registry, show that donor-conceived people overwhelmingly want to know specific details about their origins.

The study shows the need to address two distinct aspects of the donor system. First, when should children find out that their parents used donor sperm or eggs? And second, should children ever find out the identity of their donors?  The majority of the 741 respondents believed that early disclosure was important.   More than three- quarters recommended that only known or willing to be known donors should be used.            

Today, disclosure turns on the type of family.  Study participants who grew up in single parent households or households with parents who were lesbian, gay, bisexual or transgender (LGBT) were more likely to learn of their origins at an earlier age than those of heterosexual couples. The participants, in turn, had a more positive view of their means of conception.

Indeed, offspring of heterosexual parents are more likely to be confused about their means of conception. Around one quarter of respondents from heterosexual families reported an inability to discuss their origins with their social father. In many cases the fathers were not aware of the children's knowledge, or that the children were actively searching for their donors.

On the other hand, regardless of family type, most donor-conceived participants were interested in learning more about the donor and any half-siblings who were conceived through use of the same donor.  Most frequently, the participants explained that they simply wanted to see what the donor looked like, followed closely by a desire to learn more about their ancestry and family medical history.  Some had even been able to contact the donor.  Participants used words such as friend, mentor, parent, aunt/uncle, or acquaintance to describe how they felt about their donors. 

The study's findings show the need for more openness in the donor world. Over the past decade, the Donor Sibling Registry has helped match more than 8,400 members of donor-conceived families, but the matches are voluntary. Laws in different states and countries often prevent connections from being made. There are signs that this is changing. In May, a judge in British Columbia extended the rights of disclosure afforded to adopted children to donor children as well, and that case is now on appeal to the Canadian Supreme Court. So far, similar efforts at mandatory disclosure have been blocked.

In the United States, the donor-conceived have not been given a voice.  The industry is worried that if donor anonymity disappears, the supply of donor eggs and sperm will disappear with it. The experiences of other countries, such as the United Kingdom, show us that this is not necessarily true and the benefits far outweigh the costs.

Three sets of reforms provide the basis for changing the donor world. 

First, there needs to be education and counseling for donors and future parents about the impact of using donor eggs and sperm.  Donors need to understand that they are helping to create babies, not consumer products.   Parents should be encouraged to tell their children that they are donor-conceived. As one study participant explained, "I would say please, please, please be honest with your child about their origins from day one I can't tell you how big a shock it was to discover at the age of 25, that the man I think of as my dad isn't my biological father." 

Second, the United States should establish a databank to allow donor-conceived people access to information about their origins. The government must require the collection of additional information from all clinics and sperm banks, including any births from donor gametes. Currently, clinics are required to report births from donor eggs, but not donor sperm. There should be federal standards for record-keeping on all donors, and requirements for updating and sharing medical information.

Finally, and most radically, we need to start a serious discussion in this country about banning donor anonymity. This could happen at the federal level, although it likely would be a complicated and drawn-out fight. It is more likely that states, after seeing how things play out in Washington, will adopt similar laws.

If we wait, however, more children are going to grow up feeling disoriented and disconnected. We are preventing them from enjoying the same basic rights that the majority of people in the U.S. enjoy. If we value children and their families, the demands for anonymity by the fertility industry can no longer be put before the needs of children to know who they are.

Do you think egg and sperm donation should be anonymous? Write a comment below or send a note to askantidote [at] gmail [dot] com.

Photo credit: Mahalie Stackpole via Flickr

Comments

I was a sperm donor over 20 years ago and fully support the ending of donor anonymity. The donor-conceived, rather than the parents, clinics, or donors, are the people most directly affected by donor conception, and they are the ones who have to live with the consequences the longest. They also seem to be mostly against donor anonymity, and secrecy surrounding donor conception. Countries that have already ended donor anonymity include the UK, the Netherlands, Sweden, Norway, Iceland, Finland, Switzerland, Austria and New Zealand. Canada and Australia seem likely to follow. Why not the USA?

What other person with offspring has anonymity? Anonymity from the public record? Nobody. Nobody with offspring has the right to conceal themselves from the public record but people described as donors. Its absurd. Are they not human? Are their offspring not human? Their relatives? You'd think the people with the most children would be the most important to document and keep track of in terms of public health and the management of the spread of disease in the general population. You would think we'd be smart enough not to want to record people who are sterile or infertile as having reproduced, but no we apparently are not that on the ball. We have birth statistics that make it appear that women and men in their 50's and 60's are healthy enough and fertile enough to be popping out fraternal twins left and right. We have birth statistics that make it appear like people of child bearing age are having fewer children. What the heck are we thinking? We describe this process in news publications as if infertile women are conceiving children with the use of donor eggs when of course that is not what is happening at all. Fertile women of child bearing age are conceiving their children and are allowing other women to give birth to their offspring and they are allowing them to raise their children as well. Older women infertile women are not conceiving anything or anyone. They are not reproducing. Lets get this straight. Let's not set up separate record keeping practices for donor offspring as if they are some kind of sub human freaks of nature. They belong to the same species as the rest of us. They are human their relatives are human and it is indeed time to treat them with the same respect as and rights as other human beings. They are not the property of their biological parents to be sold, gifted, traded, bartered or thrown away. They don't belong to the people who commissioned them. They are citizens of the country, of the world and as we have done them a great and terrible injustice by treating them as less than human, we have compromised the health and safety of the general public to the detriment of the common good. If we stopped this madness now and held all people accountable as parents for their own offspring it would take at least 7 generations to undo the damage done to our public health records. They are so mired in biological inaccuracy as to render them totally useless for medical research on heritable disease. You don't have to be a smart doctor or scientist to know that. It takes no education outside street smarts to see the public health disaster we've created.

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