09 July 2010
Eric Blyth is Professor of Social Work at the University of Huddersfield and Visiting Professor in the Department of Applied Social Sciences, Hong Kong Polytechnic University. Wendy Kramer is co-founder of the Donor Sibling Registry (www.donorsiblingregistry.com)Appeared in BioNews 567
At the outset we should declare our alignment with the authors' desire to acknowledge donor-conceived people's right to access their ancestral, genetic and biological background.
Nevertheless, we have serious misgivings about the report, which is based on an online survey utilising Survey Sampling International's SurveySpot web panel drawn from more than one million American households (3). 1610 adults aged 18-45 years took part, of whom 562 were adopted as infants, 563 were raised by their biological parents, and 485 conceived as the result of sperm donation. The authors claim that their sample is 'representative' (p. 5) or 'very nearly representative' (p. 6), although a more accurate claim would be that it is representative of the 'millionplus American households that had signed up to receive web surveys on, well, anything' (p. 20) - and who are offered cash and other rewards for their participation, rather than of the US population as a whole.
Representativeness apart, the first thing to be said about this report is that it eschews all deference to modesty. In a single sentence, its claim to be 'the first effort to learn about the identity, kinship, wellbeing, and social justice experiences of young adults who were conceived through sperm donation' (p. 5 - our emphasis) discounts every previous research study in this field, and may well explain the absence of reference to any existing studies (except for a cursory end-note [pp. 123-124]). It also probably explains why there is no evidence that the specific questions posed in the study are grounded in existing research involving donor-conceived people. What is less easily explained is why ethical review for this study was not obtained - an essential pre-requisite for all serious research involving human participants. Dissemination of the report via IAV, rather than through an academically credentialed institution, also suggests a lack of competent peer review at any stage.
Somewhat incongruously, the authors intersperse their own findings with comments from other people totally unconnected with the study, but known to be opposed one way or another to donor conception. Whilst we are not claiming that there is a one-size-fits-all approach to reporting research, this unorthodox approach serves to obfuscate rather than illuminate.
However, the major concern with the report is the authors' extensive misrepresentation of their own data so as to best promote their message that donor conception is 'bad', even when their own evidence doesn't support it. Space limitations mean that we can provide only illustrative examples here:
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.
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).
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.
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).
The report has highlighted issues that warrant further serious study. For example, we were surprised to read that 20 per cent of donor-conceived participants claimed to have acted as gamete/embryo donors or surrogates and that 52 per cent would consider being a donor or surrogate (pp. 35-36) - a finding that does not accord with our years of experience of working in this field. Nevertheless, it needs to be investigated in future studies. However, judged on its own merits, this report is seriously flawed and the authors' analysis should be treated with extreme caution.