Join us for a live moderated chat tomorrow at 10am PT/1pm ET, featuring the director of Donor Unknown and some of the people whose lives have been forever altered by assisted reproductive technologies.
(Update: A transcript of the chat is now available at the bottom of this post.)
Sperm donors — such as Jeffrey in Donor Unknown — have been in the news plenty lately: The New York Times broke the story of one man who is believed to have fathered 150 children via anonymous sperm donation. That seemingly excessive number of progeny exposed something that many of the children of assisted conception have long known: The fertility industry, which is worth more than $4 billion a year, is mostly privatized and unregulated in the United States. Most donors are completely anonymous.
When in vitro fertilization and other assistive technologies became mainstream in the late 1970s and 1980s, there was suddenly hope for infertile couples, gay couples, and single people who wanted to raise children to realize their dreams. Their children would be special blessings, born out of determination, desire, and patience as well as love. Today the first wave of children of these miraculous conceptions is all grown up, and some of them want to know who their donor is, but cannot. What perhaps no one foresaw was the psychological impact of being a child conceived this way — not knowing and generally unable to find out a full half of your biological identity. Donor-conceived children often feel as adopted kids do: that the secrecy around their creation makes it feel taboo or shameful. Some feel intense anger or feelings of abandonment or that they were deceived if not told at an early age. (There are significant parallels to the adoption-rights movement).
To discuss the issues surround donor conception including the bioethics of anonymous sperm and egg donation, we will have a live moderated chat tomorrow, Oct. 20, 2011 with a great panel. They are:
- Dr. Diane Beeson, PhD — a medical sociologist and Professor Emerita of Sociology at California State University East Bay, and author of the recent study “Offspring searching for their sperm donors: how family type shapes the process” (PDF)
- Lindsay Greenawalt — a blogger (Confessions of a Cryokid) who is actively seeking her donor and helping others do the same
- Eric S., a blogger (DI-Dad) who was married when he discovered he was infertile. Eric and his wife have two children via donor insemination.
- Stephanie Blessing — a Christian family blogger (My Father’s Daughter) who discovered she was donor-conceived in her adulthood.
- Jerry Rothwell, director of Donor Unknown, joining us from the UK.
Transcript
Independent Lens:
First, let’s introduce our panelists: Dr. Diane Beeson, PhD — a medical sociologist and Professor Emerita of Sociology at California State University East Bay, and author of the recent study “Offspring searching for their sperm donors: how family type shapes the process”. Welcome Diane!
Diane Beeson:
Thank you. Happy to be here!
Independent Lens:
Lindsay Greenawalt — a blogger (Confessions of a Cryokid) who is actively seeking her donor and helping others do the same.
Lindsay Greenawalt:
Great to be a part of this chat!
Independent Lens:
Eric S., a blogger (DI-Dad) who was married when he discovered he was infertile. Eric and his wife have two sons via donor insemination.
Eric Schwartzman:
Hello. Happy to be here as well. I actually have a boy and a girl.
Independent Lens:
Ah, apologies Eric!
Also, Stephanie Blessing — a family blogger (My Father’s Daughter) who discovered she was donor-conceived in her adulthood. Welcome!
Stephanie:
Thanks for having me!
Independent Lens:
Jerry Rothwell, director of Donor Unknown, joining us from the UK. Welcome Jerry!
Independent Lens:
Let’s start with you, Lindsay. You have a pretty active blog about donor conception and how to find one’s donor. What was your personal experience that drove you to be active on this issue?
Lindsay Greenawalt:
I knew all my life I was donor-conceived, my mother was a single mother by choice in the early 80s…
Lindsay Greenawalt:
I always wondered who my biological father was, but I didn’t have any information on him until March of 2008 when I found my donor number….
Lindsay Greenawalt:
It was that knowledge that brought me to create Cryokid, and now I am trying to help others from the knowledge and experiences I have had over the past 8 years I spent searching.
Independent Lens: Have you found any of your half-siblings?
Lindsay Greenawalt: Yes. I was in contact with a mother and daughter and we had all done previous DNA tests (paternity tests with former donors). And I have a background in genetics and I analyzed our results and realized that there was a very strong chance we were sisters…
Lindsay Greenawalt: So we did a professional DNA test and it came back 99.8% probability that we are related.
Independent Lens: Wow. Stephanie, I understand that you weren’t aware that you were donor conceived until you were an adult. What was that experience like?
Stephanie: I was 32 years old when I found out 2 and a half years ago about my conception…
Stephanie: I was shocked, to say the least. I went through a HUGE identity crisis – who am I really? Whose face do I see in the mirror? I’ve never struggled with depression before, but I went through it for several months afterwards.
Independent Lens: You come at the issue with a Christian perspective. Do you find reconciling this knowledge of your conception with your faith difficult?
Independent Lens: (We’ll be weaving in some audience comments as we go here … good observations …)
Stephanie: Yes and no. On one hand, I do not believe that donor conception is right ethically and Biblically, however I also understand that this is how I was meant to be created. I believe that God allowed my parents to do this, and I’m still exploring why!
Comment From Lisa Barr I’m adopted and I understand the longing to find out the unknown. More than anything, I wanted to have a family resemblance to someone.
Independent Lens: Speaking of ethics, Dr. Beeson – you’ve done some research on this. What is the bioethical conundrum here, with a mostly unregulated industry, and so many DC people searching for their biological roots?
Diane Beeson: The ethical problem is that the various parties involved in DI have different interests. ..
Diane Beeson: Sperm donation has become big business and many sperm banks and fertility specialists have feared that ending anonymity of donors would reduce the supply of donors…
Diane Beeson: and unfortunately there is a cultural history of stigma associated with infertility…
Diane Beeson: But there is an international trend under way toward more openness out of the recognition that it is a basic human right of people to know their origins…
Diane Beeson: Our research, which is the largest study of DI offspring ever published shows that the many DI offspring wish to have more information and contact with their sperm donors…
Comment From Kamilla (The Brave Lass) Dr. Beeson, not only to know their origins, but to know they aren’t marrying a half sibling.
Diane Beeson: There are many reasons to know. Kamila mentions one important one, but there are also medical reasons.
Independent Lens: Eric – you have a unique perspective here being a parent of donor-conceived kids. What is your philosophy about when you inform your children and how you shepherd them through what may be a bumpy struggle with their identity? How can you smooth that path for them?
Eric Schwartzman: My philosophy has always been openess. My son was told at age two and his sister knew from birth as she would hear our discussions with her brother…
Eric Schwartzman: My responsibility is to find out as much as I can and be ready for the real questions when he gets a bit older. Hence my blog and being active.
Independent Lens: Jerry, you approach this subject coming from the UK, where there are many more controls on the fertility industry than we have in the US and Canada. What drew you to this particular story, and did you come away with a different perspective than you went in with?
Jerry Rothwell: We came across the story through the donor, Jeffrey, when one of the film’s producers was making a drama about donor conception for BBC schools TV. Then we made contact with the different families who’d used him as a donor…
Jerry Rothwell: I guess I was surprised at how different regulation in the US is from in the UK, where donor conception is more highly regulated…
Jerry Rothwell:I think that has pluses and minuses. In the US it has been easier to find your donor; in the UK now you have to be willing to be known, but it hasn’t always been like that.
Independent Lens: Let’s take this comment from a viewer – how would our panelists respond or advise Sandy?
Comment From Sandy I am also a parent of a donor conceived child. However, my husband did not want our child to know. I felt differently, resulting in conflict. Our child is now searching for his donor and other half sibs.. Finding information is so difficult.
Eric Schwartzman: Sandy, I run a Yahoo group for DI Dads like myself. You did not say whether you used DE or DI. But your husbands reaction is typical of most heterosexual couples…
Diane Beeson: Our research indicate that families with fathers are the ones that have greatest reluctance to be open with their children about DI. This is why the work Eric is doing with men considering DI is so vital. Infertile men don’t seem to be getting adequate counseling to understand how to deal with this issue…
Jerry Rothwell: Hi Sandy – my sense from the process of showing the film is that those secrets are difficult to hide in a family, and that when they come out it’s difficult for the child. In the US, the Donor Sibling Registry seems to be a big source of information; there’s an equivalent in the UK – DonorLink, but depending on when children were born there’s often no information.
Stephanie: My parents had the same conflict, Sandy…which is why I found out at 32, and my mother was as surprised as I was when she told me because it wasn’t planned!…
Independent Lens: How is that possible Stephanie??
Lindsay Greenawalt: Depending on when your son was born and what sperm bank/clinic he was conceived from there is a broad spectrum of information that may be available. Though I am a strong advocate of DNA testing through FamilyTree DNA called the Family Finder test. And depending on the information you have you may there are things you can do to search.
Diane Beeson: The challenges of male infertility do not end with DI, they continue as children grow. As Stephanie’s experience indicates the risks of having a child find out later in life are best avoided by openness from the beginning. Men need to understand that what makes a good father has nothing to do with fertility.
Stephanie: While there is no “good” time to tell a child, I have a feeling it might be more traumatic as an adult – not only did I have to deal with life altering information, I also dealt with the issue that I’d been lied to for 3 decades.
Independent Lens: What can be done to lessen the stigma both for dads and children around donor conception? Seems as though huge numbers of DI kids are about to enter adulthood.
Lindsay Greenawalt: As for the secrecy, I think there is so much shame from infertility, and I can understand your husband’s reluctance in telling his son – some parents fear that the child will love them less if they find out they are not biologically related. But it’s simply not true. And the secret will come out, and I always tell people that it’s better to be upfront and honest with them from the beginning because they will learn somehow and the anger with learning it later in life or in a circumstance that is not positive may result in distrust and serious problems.
Eric Schwartzman: My goal as a parent was to be able to say I never lied to my kids. The stigma is lessening but most hetero dads and families never come forward or are frightened to do so. Setting up the ongoing lies.
Stephanie: My mother told me about my conception when I asked her about my dad’s health issues and whether or not they were genetic. She told me that my dad was not my bio-father at that point. She certainly didn’t wake up that morning planning on telling me about my conception.
Diane Beeson: Education and counseling about male infertility are very important. We also need good role models of men who understand parenting isn’t about sperm count. We need people like Eric who have confronted this issue so courageously to be acknowledged more publicly. We need cultural images of great fathers who parent DI conceived children.
Independent Lens: This seems to be part of the struggle – one aspect is the difficulty in finding one’s donor. But the psychological impact of feeling deceived may even be harder – is that accurate?
Eric Schwartzman: Five years ago I spoke at a Toronto conference held by the Infertility Network and the feelings of deceit I saw from the young DC adults has always stayed with me.
Jerry Rothwell: Certainly that’s true of the children in the film. Those told from birth had built it into their sense of who they were, those who found out later it was a challenge to their sense of identity.
Stephanie: I would say that having the truth withheld was/is as difficult to grapple with as missing out on half of my family, so I do think that for me, that is an accurate statement.
Diane Beeson: We also need to understand that secrets reinforce feelings of shame. Acknowledging things that are uncomfortable creates new situations in which it is possible to feel pride.
Lindsay Greenawalt: I come to the table always knowing, but at the same time my mother married when I was 4 and so the secrecy and shame was a later manifestation of my mother trying to hide her earlier decisions (my having my step-dad legally adopt me for example). In my experiences it’s the psychological feeling that how you were conceived is something wrong and needs to be hidden is the most damaging.
Independent Lens: But you hear people say “You were CHOSEN and we wanted you so much that we went out of our way to make sure we had you!” Adopted kids hear this too. How do you feel when you hear sentiments like that now?
Lindsay Greenawalt: Like I want to punch the person who said it!! LOL
Stephanie: Lol, I agree Lindsay!…
Independent Lens: Why is that Lindsay?
Eric Schwartzman: My goal is to never make those statements to my kids knowing reactions like Lindsay’s. She may hit me.
Lindsay Greenawalt: No, seriously, it’s something we deal with on a day-to-day basis. Most people know someone who has suffered from infertility. Hardly anyone has met anyone donor conceived (that they know of). So the sympathies are automatically in favor of the parents.
Stephanie: But the fact is, the child created via donor gametes is the Plan B child. Obviously the original wanted child is the child created between the two adults in the relationship.
Lindsay Greenawalt: Exactly Stephanie!
Lindsay Greenawalt: There is also the double-standard. Parents want the genetic/biological connection to the child through one parent. But when that same child wants the genetic/biological connection with the missing parent, suddenly genetics/biology aren’t important and love is all that matters!!!
Comment From Donor Conceived I found my father, my parent’s “sperm donor” but can never have a fatherly relation to him. Fortunately a few of my siblings, his social/genetic children, have embraced me and my family. I only wish my dad and my father and our social families could have embraced each other in the same way. I realize that that dream is unrealistic in 99% of cases but it is dream I hope more people who chose this route consider.
Eric Schwartzman: Infertilie parents when they make these decisions are not fully cognizant of the effects of DC.
Independent Lens: What would any of you say to a couple or individual considering donor conception (egg, sperm, etc) today?
Eric Schwartzman: I say every day in my dads group. Look at the issue from the side of the child and adult they will grow up to be.
Lindsay Greenawalt: I’d say do your research. Talk to us (donor-conceived adults), ask us questions. Put yourself in your future child’s shoes. Understand that it’s not about YOU. No matter how you might feel about it you have no right to make decisions about another persons life that will affect them as such. I am an advocate for using a known donor or at the very least ID-release. Do NOT use an anonymous donor!!
Independent Lens: Lindsay, what about fear people have that the known donor might try to later exert legal claim on the child?
Lindsay Greenawalt: I think it’s a fear tactic used by the infertility industry that has no real support in case studies.
Lindsay Greenawalt: If there is such fear use an ID-release donor through a sperm bank. At 18 the child can make his or her own mind about contact and the donor will no longer be financially liable.
Eric Schwartzman: It is fear some dads have. Most know it is probably never going to happen but there is fear the donor may want to step into the shoes of a non bio dad.
Eric Schwartzman: That certainly is used and stated. I am not saying its completely wrong or right but it is used often…
Stephanie: You have NO EXCUSE to be ignorant of how DC people may feel because of the vast amount of information online. PLEASE do your research and then decide if this is something that you want to do your future child.
Diane Beeson: I think the issues are very different for those considering egg donation and those considering sperm donation. Also it depends whether we are talking about single women, lesbian couples or heterosexual couples.
Independent Lens: How so, Diane?
Diane Beeson: Single women and lesbians using sperm donation don’t seem to have the problems with full disclosure that heterosexual couples have. MOre counseling is needed for prospective dads who are infertile…
Diane Beeson: Infertile men need more support in understanding how to transcend the stigma of infertility so that they can be more open and honest with their DI children…
Comment From Christina Kim Hi..this topic is so fascinating. I’m currently involved in a research project on embryo adoption (which is also largely unregulated) and I’m curious if the panelists have any thoughts on whether they think regulation would be more helpful in terms of helping to address some of the long-term impact of fertility technology?
Eric Schwartzman: In NY state I am seen as the “natural” parent based on my marriage to the mom at the time of birth.
Diane Beeson: Egg donation, since it requires IVF is a more medically risky procedure with inadequately studied long term effects. Women who carry a fetus conceived via egg donation have a longer bonding period during pregnancy and may not feel as separate from the child as an infertile dad.
Eric Schwartzman: I think regulation would definitely address some issues. The question is who is deciding on the regulations? Industry, government?
Lindsay Greenawalt: I think regulation is a necessity. It’s appalling that there is no regulation, and the US should be ashamed of itself. Once there is regulation there is a better understanding of what is being done and research can be done. Right now it’s all laissez-faire.
Jerry Rothwell: In the UK now, all donors have to sign up to ID release when the child reaches 18. I think that’s an example of regulation which is helpful, and the industry shouldn’t be so afraid of it.
Eric Schwartzman: Look regulations may not always get it right either….
Eric Schwartzman: Didn’t the UK just approve donors to be paid?
Diane Beeson: Federal regulation is needed to control some of the excesses of the industry and especially to protect the health and welfare of those involved in much of what is very experimental. The rights of donor offspring have especially been neglected.
Jerry Rothwell: No – it tripled the expenses payments to egg donors from £250 to £750; but when you consider what egg donation involves, I don’t think that really counts as a financial incentive.
Independent Lens: Is the donor-conceived movement working with the adoption-rights movement at all?
Eric Schwartzman: Bill Cordray is probably the expert of parallels between adoption and donor conception.
Lindsay Greenawalt: True Eric, but it’s better than what we having going now where the industry sets the standards, which are completely ridiculous. 1 birth for every 200,000 in the population – that means in NYC alone there could be 600 kids from the same donor!!!
Eric Schwartzman: Lindsay I agree. Industry self-regulation is not the answer and needs to be stopped.
Independent Lens: Are there any allies in Congress willing to take the issue up any time soon?
Diane Beeson: Industry lobbyists are the main barrier to effective regulation.
Eric Schwartzman: I thought here have been state level initiatives but no nobody yet in Congress.
Lindsay Greenawalt: It’s an issue that neither the liberals nor the conservatives want to tackle. Liberals don’t side with us b/c they are all about reproductive rights. Conservatives don’t side with us b/c they support big corporations. That’s the biggest issue we have right now with getting something accomplished. It must be done at the state level, and with the economy and everything else going it it’s not a top priority.
Diane Beeson: Unfortunately, Lindsay is correct.
Comment From Hallie Collins Also, no I don’t think anyone in congress really sees this as a problem. Or at least, it’s never been brought up in any discussions I’ve seen.
Comment From nerdling i’m currently trying to conceive with donor sperm from a bank. i’m only considering open i.d. donors, and though my bank has a lower “family limit” than some others, it still seems like the risk of a LOT of half siblings out there.
Comment From nerdling i feel there needs to be government regulation on family limits per donor. they have government regulation on all of the health standards for sperm/egg/tissue donation. family limit is also a concern for the public health interest.
Independent LensIs the risk of sibling marriage really that significant? Is the problem the ‘ick factor’ or actual genetic danger?
Lindsay Greenawalt:
I think in the past it was more of an issue. When local clinics were recruiting all their own donors from that area and people who were being conceived all lived in that area. Today it’s less of an issue – IMHO – b/c sperm banks are selling sperm worldwide.
Eric Schwartzman:
Jerry, the marriage issue was a big one for one of the kids in your movie from what I recall.
Jerry Rothwell:
It’s impact as an idea is far greater than the chances of it actually happening. It’s the first thing people come up with when talking about the issue….
Jerry Rothwell:
One of the children in the film talks about it as a worry, and I put that in the film because worrying about it is a common experience. But it’s statistically almost impossible, I think.
Lindsay Greenawalt:
Also, going with what Diane just said – many sperm banks have been known to not give accurate donor numbers, not to mention clinics that claim to use their own sperm but really buy it from a bank. And some give different donor numbers to the recipients than to the donors so that contact is nearly impossible.
Independent Lens:
This is fascinating! Thank you all! Tune in tonight at 10pm for the PBS premiere of Donor Unknown (check listings, as it airs on Sunday in NYC. LA, and other major markets).
Diane Beeson:
Thanks everyone!
Lindsay Greenawalt: Thanks for having me!
Eric Schwartzman:
Thank you for the opportunity to participate.
Jerry Rothwell:
Thanks for a great discussion.