Tuesday, July 20, 2010

A response to "My Daddy's Name is Donor: Read With Caution" by Eric Blyth and Wendy Kramer

Responding to Eric Blyth and Wendy Kramer's critique of "My Daddy's Name is Donor" at BioNews
Elizabeth Marquardt 07.20.2010, 11:47 AM

A response to "My Daddy's Name is Donor: Read With Caution!" by Eric Blyth and Wendy Kramer, published by BioNews (U.K.), July 19, 2010

By Elizabeth Marquardt, co-investigator, My Daddy's Name is Donor

Eric Blyth and Wendy Kramer respond to our report, My Daddy's Name is Donor: A New Study of Young Adults Conceived Through Sperm Donation, in a BioNews Commentary titled: "My Daddy's Name is Donor: Read With Caution!" Given that the educated readers of BioNews probably learned long ago that critical reading skills should be applied to anything that purports to be non-fiction, the subtitle would seem to be overkill, but apparently the editors at BioNews and the authors themselves believed otherwise.

The commentary by Blyth and Kramer contains at least one blatant error and appears mainly to reflect their anxiety that new researchers and new voices are entering a field and leading a debate that until now has been led by themselves and a familiar set of international colleagues. They should prepare themselves, because as the global fertility trade continues to explode, there will continue to be greater scrutiny by an ever-widening set of scholars who will bring their own questions and concerns to the debate.

Now, to deal directly with the error, charges, and concerns in their commentary.

First, Blyth and Kramer bizarrely call the Commission on Parenthood's Future, which released My Daddy's Name is Donor, "a New-York based Christian think tank."

First, the commission is a commission, not a think tank. More importantly, it is not "Christian." Rather, the commission is an independent, nonpartisan group of scholars and leaders who have come together to investigate the status of parenthood as a legal, ethical, social, and scientific category in contemporary societies and to make recommendations for the future. More information can be found on page ii of the report and at this website. The editors of BioNews have been alerted to this error and have been requested immediately to post a correction.

Perhaps Blyth and Kramer were trying to describe the Institute for American Values, of which I am vice president for family studies and direct our Center for Marriage and Families. Our Institute is based in New York and is a think tank, but again it is not a "Christian" organization. The Institute is a non-partisan, non-profit think tank that brings together scholars and opinion leaders to examine families and civil society, and the sources of competence, character, and citizenship. Readers can learn more about the Institute and its four centers for research and engagement by visiting www.americanvalues.org.

Having responded to that blatant error, let's continue.

Nowhere do we claim, as Blyth and Kramer suggest, that our survey is representative of the U.S. population as a whole. Rather, we state that it is "representative of Americans who signed up for web-based survey panels, who may differ in unknown ways from Americans as a whole. We believe this bias is unlikely to be substantial." (See page 121 in the extensive discussion of methodology and limitations available in report, the entirety of which is available free online at FamilyScholars.org.) To put it another way, as Blyth and Kramer themselves quote from page 20 of our report, the survey is representative of the "million-plus American households that had signed up to receive web surveys, on, well, anything."

We fielded our survey with AbtSRBI, a well-respected survey research firm that abides by industry best practices, which used Survey Sampling International's SurveySpot web panel. Blyth and Kramer curiously feel obliged to note that participants in the SurveySpot web panel are "offered cash and other rewards for their participation." Perhaps they are not aware that it is not uncommon for researchers and survey research firms to offer modest incentives for participants to take part in studies. (Blyth must be the only academic in the world who does not routinely pass signs posted on campus in which faculty members in the psychology department plead with students to come take part in a study in exchange for cash.) As every other researcher knows, modest payments or incentives for participants to give some of their time is not a problem so long as participants are compensated on the basis of their participation alone, and not, for example, for their responses or based on which subgroup of the sample they fall into.

Would readers like to know what is a problem? Here is an example: Wendy Kramer is an activist who runs the Donor Sibling Registry (DSR). The DSR helps half-siblings conceived with the same sperm or egg donor – and sometimes the offspring and donors themselves – to find one another. It also maintains a lively message board made up of many women who have been or are considering conceiving children with donor insemination, as well as some offspring who were conceived this way, some sperm donors and egg donors, and some other recipient parents such as mothers who conceived through egg donation or fathers or lesbian co-mothers whose current or previous partners conceived through sperm donation. With a professor at Cambridge University, Kramer is conducting surveys –she refers to them collectively as "the Cambridge study" – of people who congregate at DSR. They are reporting the results in journals such as Human Reproduction. The participants are all persons who have heard of DSR, who have been motivated to join or actively follow DSR, and who have responded to personal appeals from Wendy Kramer herself to take the surveys posted at DSR. Meanwhile, Wendy Kramer's own story of conceiving a son through sperm donation and her views on matters related to this topic are widely known to those who congregate at DSR, and Kramer herself is widely admired (with good reason) among many of them for her efforts to bring greater openness to the fertility industry. Kramer and her colleague at Cambridge then purport that their work tells us something about the experience or perspectives of donor offspring more generally (or about the mothers who use donor insemination) – when in fact all they are really telling us is about the offspring and mothers who congregate at the DSR, who may well bear little resemblance to the offspring and mothers in the broader population who have never heard of DSR. From a research point of view, this is a problem.

Moving on, Blyth and Kramer are offended that we cite existing work on this topic in a "cursory endnote" on page 123-124. Endnote 6, to which they refer, is more than 350 words long and refers to eleven scholars and authors, as well as two websites. We regret that this endnote is insufficient for their tastes. (Other academic or government studies are also cited in endnotes 58, 64, 82, 86, 89, and 114 of the report.)

They also claim that we lack "modesty" because we say, on page 5, that My Daddy's Name is Donor is the "first effort to learn about the identity, kinship, wellbeing, and social justice experience of young adults who were conceived through sperm donation." In fact, we should have clarified in that sentence, as we do in multiple other places in this report, that this is the first such effort to study this question with a sample that is not only large (485 donor conceived persons) and representative of a million plus households but also offers comparison groups of those who were adopted as infants (562 persons) or raised by biological parents (563 persons), as no other existing study in the world does (see pages 19 and 20 of our report for a fuller discussion about why this study is unique).

Further, they say our study lacks "competent peer review." Our study was released by the Commission on Parenthood's Future. The commission members are listed in the front of the report and at this website. They hail from America's top universities including the University of Texas at Austin, University of Virginia, Princeton, Duke, University of Chicago, University of Pennsylvania, Emory, Rutgers, and more. There are no secrets about who were the peers who reviewed our work – they are all listed in the front of the report. In addition, unlike any other researcher on this topic of whom we are aware (indeed, unlike few if any researchers publishing today) we published the full "summary of the data" (in technical terms, the "marginal frequencies") in the report. See Table 1 of the report, which is entirely available online, free, at FamilyScholars.org. Also see Tables 2-5 and Figures 1-4, also available in the report. Finally, see the response of my co-investigator Norval D. Glenn, the Ashbel Smith Professor of Sociology and Stiles Professor of American Studies at the University of Texas at Austin (and former editor of the journals Contemporary Sociology and Journal of Family Issues), to a previous critic at FamilyScholars.org, here, and my colleague David Blankenhorn's discussion of peer review at this post at FamilyScholars.org.

Blyth and Kramer then move into what is apparently the heart of their critique. They say, "the major concern with the report is the authors' extensive misrepresentation of their own data so as best to promote their message that donor conception is `bad,' even when their own evidence doesn't support it."

Misrepresentation of data is a gravely serious charge. Let's see how Blyth and Kramer back up their charge. They say:

1) The authors report the following findings: 65 per cent of donor-conceived participants agree that `My sperm donor is half of who I am'; 45 per cent agree that `The circumstances of my conception bother me'; 47 per cent report that they `think about donor conception at least a few times a week or more often' – and draw from these the exaggerated claim that `donor offspring experience profound struggles with their origins and identities' (p. 6 – our emphasis). The one statement that might suggest any sort of 'struggle' – `the circumstances of my conception bother me'- generated the following responses from donor-conceived participants: 19 per cent 'strongly agreed'; 26 per cent 'somewhat agreed'; 20 per cent 'somewhat disagreed'; 30 per cent 'strongly disagreed' and five per cent `didn't know'. In other words, more than half didn't care.

What have Blyth and Kramer told the reader here? As far as I can see, they have informed us that in their opinion finding that between half to two-thirds of persons conceived through an elective procedure performed on their parents feel that their usually unknown biological father is half of who they are, that they are bothered about the circumstances of their conception, and that as adults they think about how they were conceived several times a week or more often – Blyth and Kramer have informed us they believe that none of this is much of a problem. We disagree.

They continue:

2) This strategy is repeated when discussing payment to donors. The authors assert that `nearly half [of donor-conceived people] are disturbed that money was involved in their conception' (p.6) and `with donor conception… the growing child struggles with the dawning realization that his or her biological father or mother sold the goods to make the child without even a look back to say goodbye' (p. 72). But what do their participants say? Twenty per cent 'somewhat disagreed' and 33 per cent 'strongly disagreed' with the statement `it is wrong for people to provide their sperm or eggs for a fee to others who wish to have children.' Added to the six per cent who `don't know', then 59 per cent of donor-conceived participants had no strong concerns about `donor' payment (p.84).

Here, Blyth and Kramer choose to highlight the issue of payments to donors. (I'm not sure why this issue merits such concern on their part – perhaps they are part of discussions in their respective nations about whether payments to donors should continue, a practice which facilitates the trade in sperm and eggs, which both of them support?) Here is what we found regarding the issue of money: Forty-five percent of donor offspring agree, "It bothers me that money was exchanged in order to conceive me." Forty-two percent (about twice as many compared to those who were adopted or raised by their biological parents) agree, "It is wrong for people to provide their sperm or eggs for a fee to others who wish to have children." The issue of money is a not-infrequent topic of concern among donor offspring, as I'm sure Blyth and Kramer are aware. In the last week I personally have seen references to it in two sources that are otherwise quite supportive of using donor conception for having children. The organization COLAGE published a guide about donor insemination. It quotes a young person conceived to lesbian mothers and raised with a known donor about the feelings of her peers with anonymous donors: "I have heard some children of anonymous donors say that they wondered if their dad/mom even wanted to make a life or if they just wanted the money that went along with it." In the movie The Kids are Alright, which I saw yesterday, one of the pressing questions a 15 year old boy has when he meets his sperm donor is, "Why did you do it?" The sperm donor hesitates. The boy asks, "How much did you get paid?" The sperm donor responds, "I got paid 60 dollars a pop." The boy winces. Blyth and Kramer apparently have a point of view about payments to donors. But others have different points of view.

Next up on the Blyth/Kramer critique:

3) They make a big deal of the `fact' that donor-conceived people feel that `no one really understands me' – repeating this on no less than three occasions (pp. 7, 39, 45). However, once again, the participants themselves tell a somewhat different story. As many 'strongly disagreed' with the statement `I don't feel that anyone really understands me' as 'strongly agreed' with it, although overall, slightly more agreed (either somewhat or strongly) as disagreed – 53 per cent vs 46 per cent (p. 104). Of course, this statement is pretty vague and doesn't necessarily have anything to do with donor conception. In contrast, when the study focused on very specific issues about donor conception itself, the level of support from donor-conceived participants is high. For example, 56 per cent disagreed with the statement `If I had a friend who wanted to use a sperm donor to have a baby, I would encourage her not to do it' (p. 82). However, this does not sit easily with the authors' agenda. Instead, in order to emphasise their anti-donor conception message, on two occasions (pp. 14 and 65) they focus on the observation that 37 per cent of the donor-conceived participants agreed with the statement.

As we say, 25 percent of donor offspring strongly agree, "I don't feel that anyone really understands me," compared to 13 percent of adopted persons and 9 percent of those raised by their biological parents (I am not sure why Blyth and Kramer chose to ignore the comparison groups on this and other points). This is one among dozens and dozens of items we report in this 140 page report. We believe it offers insight into the experience of donor offspring. Similarly, we think it is quite striking that 37 percent of donor offspring would discourage their friend from having a baby the way their mom had them. Blyth and Kramer disagree, which is certainly their right. And of course, they are able to dig into and challenge our view on our own data precisely because we provided all the data in the report.

Finally, they add:

4) The data are again misrepresented when reporting participants' agreements with various `expert opinions': 44 per cent agreed that `Donor conception is fine for children so long as parents tell children the truth about their conception from an early age'; 36 per cent agreed that `Donor conception can be hard for children, but telling children the truth early on makes it easier for the children' (our emphasis), and 11 per cent agreed that `Donor conception is hard for children even if their parents tell them the truth' (p. 100). These findings are distorted in the summary soundbite: `About half of donor offspring have concerns about or serious objections to donor conception itself, even when parents tell their children the truth' (p. 57).

I'm sorry, but I am unable to see how adding 36 percent who feel donor conception can be hard for children, but telling children the truth earlier on makes it easier, and 11 percent who feel donor conception is hard for children even when parents tell their children the truth, to come up a summary point that 47 percent, or "about half," of donor offspring have concerns about or serious objections to donor conception even when parents tell the truth, is a "distortion." Perhaps Blyth and Kramer are sensitive to this point because they are among those who feel that donor conception is not a problem so long as it is handled the "right" way. Speaking personally, that is not my point of view. My point of view is this: An elective procedure used to treat one person's medical or social issue, which has the most direct effects on another, entirely different person who is, at the time, unable to speak for him or herself or consent to treatment, should be held to the rigorous ethical test of asking "is anyone harmed at all"? In the case of donor conception, our study and ample other work is showing that indeed the resulting persons can be harmed by this practice. I am skeptical that we can sanitize the practice to the extent that it will prevent harm. Blyth and Kramer have a different point of view. Clearly, we disagree.

Blyth and Kramer conclude by saying they were "surprised" that we found that 20 percent of adults conceived through sperm donation said that, as adults, they themselves had donated their own sperm or eggs or been surrogate mothers. They say this issue "warrants investigation in future studies." We too were surprised, and we invite and welcome other researchers to examine this question and, indeed, all other aspects of donor conception and its effects on the offspring.

Curiously, Blyth and Kramer nowhere addressed our findings about outcomes for donor offspring. For example, even with controls for socio-economic status, we found donor offspring and those who were adopted are twice as likely as those raised by biological parents to report problems with the law before age 25. Donor offspring are about 1.5 times more likely than those raised by their biological parents to report mental health problems, with the adopted being closer to twice as likely as those raised by biological parents to report the same thing. And donor offspring are more than twice as likely as those raised by biological parents to report substance abuse problems. See Figure 1 on page 115 of the report. Did Blyth and Kramer have any reaction to these findings?

"Misrepresentation of findings" and "distortion" of data are gravely serious charges. Frankly, I see nothing in what Blyth and Kramer have written that justifies such charges. Rather, I see a researcher (Blyth) and an activist (Kramer) who have their own set of opinions that differs from those of myself and my co-investigators. Where they see a glass half full, we see a glass half empty. We are willing to ask why a good society would offer a half-empty glass (that is, the intentional, deliberate denial of one's biological father) to so many children and young people.

Blyth and Kramer could well have written a thoughtful, rigorous critique of our interpretations of our findings without proffering grave charges of misrepresentation of data, and without giving educated readers a silly warning that they should "read with caution!" Sadly, they chose not to. It is a shame, because both of them, as a researcher and as an activist, have done much good in drawing attention to the legitimate needs of donor offspring to have knowledge about their origins.

Monday, July 5, 2010

A critical analysis of sperm donation practices - PhD thesis, Joanna Rose

JUST RELEASED TO THE PUBLIC.......

Rose, Joanna (2009). A critical analysis of sperm donation practices : the personal and social effects of disrupting the unity of biological and social relatedness for the offspring. Queensland University of Technology: Brisbane, Australia, [QUT Thesis].


Abstract
This thesis critically analyses sperm donation practices from a child-centred perspective. It examines the effects, both personal and social, of disrupting the unity of biological and social relatedness in families affected by donor conception. It examines how disruption is facilitated by a process of mediation which is detailed using a model provided by Sunderland (2002). This model identifies mediating movements - alienation, translation, re-contextualisation and absorption - which help to explain the powerful and dominating material, and social and political processes which occur in biotechnology, or in reproductive technology in this case. The understanding of such movements and mediation of meanings is inspired by the complementary work of Silverstone (1999) and Sunderland. This model allows for a more critical appreciation of the movement of meaning from previously inalienable aspects of life to alienable products through biotechnology (Sunderland, 2002). Once this mediation in donor conception is subjected to critical examination here, it is then approached from different angles of investigation. The thesis posits that two conflicting notions of the self are being applied to fertility-frustrated adults and the offspring of reproductive interventions. Adults using reproductive interventions receive support to maximise their genetic continuity, but in so doing they create and dismiss the corresponding genetic discontinuity produced for the offspring. The offspring’s kinship and identity are then framed through an experimental postmodernist notion, presenting them as social rather than innate constructs. The adults using the reproductive intervention, on the other hand, have their identity and kinship continuity framed and supported as normative, innate, and based on genetic connection. This use of shifting frameworks is presented as unjust and harmful, creating double standards and a corrosion of kinship values, connection and intelligibility between generations; indeed, it is put forward as adult-centric. The analysis of other forms of human kinship dislocation provided by this thesis explores an under-utilised resource which is used to counter the commonly held opinion that any disruption of social and genetic relatedness for donor offspring is insignificant. The experiences of adoption and the stolen generations are used to inform understanding of the personal and social effects of such kinship disruption and potential reunion for donor offspring. These examples, along with laws governing international human rights, further strengthen the appeal here for normative principles and protections based on collective knowledge and standards to be applied to children of reproductive technology. The thesis presents the argument that the framing and regulation of reproductive technology is excessively influenced by industry providers and users. The interests of these parties collide with and corrode any accurate assessments and protections afforded to the children of reproductive technology. The thesis seeks to counter such encroachments and concludes by presenting these protections, frameworks, and human experiences as resources which can help to address the problems created for the offspring of such reproductive interventions, thereby illustrating why these reproductive interventions should be discontinued.


Read the entire thesis here.



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My good friend Joanna Rose, most known for bringing the lawsuit in the UK that banned donor anonymity there in 2005, recently received her PhD from QUT. Her thesis covers the ethical ramifications of sperm donation and its effect on the offspring. Not only am I thrilled that she has finally completed her degree and her research is publicly available, but I feel a small bit of personal satisfaction. When I was studying abroad in Australia in 2005 I spent a week with Jo in Brisbane helping her proofread several early chapters of this exact thesis. I'm excited to read the complete product in its entirety!

Saturday, July 3, 2010

Where are the offspring?

The donor conception community has grown significantly these past few years, and it has moved from being primarily a community of recipient mommies to a community of adolescent, young and older adult donor-conceived offspring. This is a trend that I feel is going to continue as the children of the '90s and later, who were brought up without the secrecy of earlier generations, come of age.

The online donor offspring community is primarily centered around the group PCVAI: People Conceived Via Artificial Insemination. It's a Yahoo Group that has several hundred offspring (must be 16 years old to join) from across the world. This is a fantastic resource for any offspring to meet other offspring and find a place where everyone is on your side. There's almost always another member who has a similar story and can give advice and comfort. I strongly suggest any offspring new to the donor conception community, or for those who have recently learned of their conception, to join PCVAI and gain the wisdom of hundreds of others.

However, for many offspring, unless they are raised with a sibling who is also donor-conceived, many have never met another offspring face-to-face. I did not have the opportunity to meet another offspring until I studied abroad in Australia in 2005 - and once I was there surrounded by the Australian members of TangledWebs, I was able to truly come to terms with my conception and begin to heal the pain.

Unfortunately there are still few enough offspring that there are not the local support groups like adoption currently has. Not to say offspring cannot attend a local adoptee support group - most are more than willing to open their arms of donor-conceived adults, however there are some significant differences and there are sadly some adoptees who are unwilling to be accepting towards "half-adoptees".

Occasionally there are meetings or conferences in which adult offspring converge and interact, but outside of these occasional events there is little face-to-face interaction. I do suggest for any offspring who has the opportunity to attend, DC conferences or adoption conferences are a great place to find like-minded individuals! I was a panel at the Infertility Network's (Canada) Conference in Toronto in 2005 and was able to meet many "big-wigs" in the DC community, and even had the opportunity to stand with Olivia Pratten (Can), Jo Rose (UK), and Bec Hamilton (NZ), and defend the POV that donor conception is harmful against a roomful of recipient parents and infertility specialists!!

Last but definitely not least are the small number of donor-conception support groups popping up in several large cities across the world. Many of these are still geared to mommies and their small children: i.e. the Donor Conception Support Group (Aus) and the Donor Conception Network (UK). Eric Schwartzman started a group in NYC: Donor Conception New York, which provides several events in the Greater NYC area for donor-conceived families. However, all of these groups are not geared for adolescent or adult offspring.

Which leads me to my main point.....

The adult donor-conceived offspring community has grown large enough that it's about time that we begin creating more formal types of groups for offspring to gather and socialize. Over the years there have been some meet-ups in various cities inviting any offspring in the area to attend, but they are few and far between and usually limited to a handful of large cities (NYC, London, etc).

I recently connected with one of my readers who is an adult offspring who also lives in NE Ohio. She only recently learned of her conception. After talking with her I began to count the number of offspring I know of who are from or currently live in Ohio. There was a good half-dozen names that I immediately thought of, and I know of course there are more with whom I have not connected/met with personally.

So if you are an adolescent or adult offspring from Ohio (or near Ohio: Pittsburgh, Erie, Michigan, Indiana, Kentucky....), I would love to hear from you about your thoughts on putting together a group that would meet several times a year to meet one another, socialize and have some while meeting others in the same boat. Anybody up for Cedar Point or Kings Island this summer?!?!


I ask my readers this question:

Where would you like to see a donor-conceived offspring group created?

Thursday, July 1, 2010

Figuring out complex [donor] family relationships

Being donor-conceived makes family relationships all the more complicated, especially as we move farther into the future. We must distinguish between our full-blooded siblings, our half-siblings we're raised with, our half-siblings from the same donor, our half-siblings raised by our donor, our dads, our fathers, our non-biological paternal relatives and our biological paternal relatives. And this is only a single generation!!

By the time we're grandparents our family trees are going to be so complex that we might not even be able to keep track of all our nieces and nephews!! Especially these donors kids with 10, 20, 30+ siblings!!

So I found out that WolframAlpha (a computational knowledge search engine - basically it calculates or provides information on just about anything!!) has a genealogical relationship calculator. While it is really not able to deal with such complex situations as donor conception currently would allow, it's a really awesome tool to play with for fun or for genealogy purposes!


Basically, you enter the relationship you want to know and it will provide more common names for that relationship (example is cousin's son = first cousin once removed). It also provides how much DNA these two individuals would share, and other bits of information for the curious genealogist.