Accepted Manuscript Title: Once you're choosing, nobody's perfect: is more information necessarily better in oocyte donor selection? Author: Lisa R. Rubin, Inmaculada de Melo-Martin, Zev Rosenwaks, Ina N. Cholst PII: DOI: Reference:
S1472-6483(14)00679-8 http://dx.doi.org/doi: 10.1016/j.rbmo.2014.11.017 RBMO 1280
To appear in:
Reproductive BioMedicine Online
Received date: Revised date: Accepted date:
19-6-2014 14-11-2014 20-11-2014
Please cite this article as: Lisa R. Rubin, Inmaculada de Melo-Martin, Zev Rosenwaks, Ina N. Cholst, Once you're choosing, nobody's perfect: is more information necessarily better in oocyte donor selection?, Reproductive BioMedicine Online (2014), http://dx.doi.org/doi: 10.1016/j.rbmo.2014.11.017. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
1
Short title: Information on oocyte donor selection
Once you’re choosing, nobody’s perfect: is more information necessarily better in oocyte donor selection?
Lisa R. Rubina,1 Inmaculada de Melo-Martin,b,*,1 Zev Rosenwaks,c Ina N. Cholstc
a
New School for Social Research, Department of Psychology, New York, NY 10011, USA Weill Cornell Medical College, Division of Medical Ethics, New York, NY 10065, USA c Weill Cornell Medical College, The Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine, New York, NY 10065, USA b
1
Both authors contributed equally to the paper.
*Corresponding author: Inmaculada de Melo-Martín, PhD, MS, Professor of Medical Ethics Division of Medical Ethics, Weill Cornell Medical College, Cornell University, 402 East 67th Street, New York, NY 10065-6304, USA. Tel: +011-646-962-8031; Fax: +011-646-962-0281; E-mail address: [email protected]
Lisa R. Rubin, PhD, is an Associate Professor of Psychology at the New School for Social Research in New York City. Her research and clinical interests in reproductive medicine focus on the intersection of ethical, social and psychological concerns within the context of new reproductive technologies.
Page 1 of 25
2
Page 2 of 25
3
Abstract Despite a growing body of research examining the psychosocial issues involved in oocyte donation, few studies have examined the role of information in the process of donor selection. The aim of this interview-based qualitative study was to understand how donor oocyte recipients relate to information provided about potential oocyte donors, how they use this information to select donors and their preferences for, and reactions to, various types of information provided to them. Donor oocyte recipients who underwent treatment between 1995 and 2011 were recruited for participation from an academic centre for reproductive medicine. Twenty-two oocyte donor recipients participated. Findings indicate that recipients use information to select donors who they believe would enable them to fulfill their priorities: having a healthy child and ‘passing’ as genetically related. Obtaining more specific information prompted a focus on donor imperfections and presented a burden of choosing. Moreover, for participants preferring distance, having more information created dilemmas by making the donors less abstract. Although more information and options are often desired by oocyte donor recipients, increased choice can also present psychological dilemmas and emotional costs. Further research is needed to investigate the influence of information-related conflicts on patient decision-making, post-treatment emotional adjustment and disclosure decisions.
KEYWORDS: oocyte donation, donor selection, information use, qualitative
Page 3 of 25
4
Introduction Although the use of donated oocytes is an increasingly common treatment for women facing infertility (CDC, 2013), donor selection practices vary widely, both in the USA and the rest of the world. Globally, such practices are influenced by nation-specific regulations and the availability of donors. For example, in Spain, legislation (Law 14/2006- Human Assisted Reproduction Techniques) regulates remunerative aspects of the process and also, specifically, prohibits the selection of the donor by the recipient. In contrast, although the availability of donors is far from unlimited, intended parents in the USA generally have more latitude to select donors with specific qualities. Moreover, the selection detail available to the recipient is likely to increase in the upcoming years, as the technology and organizational model moves toward oocyte banking (Almeling, 2013).
Recognition of the range of psychosocial and ethical issues that accompany donor oocyte practices is increasing, focusing on matters such as parents’ disclosure of the means of conception to donor-conceived children and questions about appropriate compensation for oocyte providers (Klein and Sauer, 2010; Keehn, et al., 2012; Golombok, et al., 2013). Less attention, however, has been given to some of the more nuanced, but nonetheless important, aspects of the process, such as the nature (e.g. type and quantity) of information about the donor that is provided to intended parents, and how the selection process is experienced by recipients, particularly in the context of oocyte donation (Lindheim and Sauer, 1998; Pennings, 2000;
Page 4 of 25
5
Becker et al., 2005; Stuart-Smith et al., 2012). In the USA, a variety of models of information provision co-exist, ranging from the most basic, such as medical history and appearance, to the extremely detailed, such as adult photos and videos. Additionally, in the USA, donation may be completely anonymous, may be anonymous but include the possibility of identity release to the donor conceived child on reaching adulthood, or may be a known donation.
The present study draws on in-depth interviews with donor oocyte recipients with the aims of developing a richer understanding of how recipients relate to information provided to them about potential oocyte donors, including how they use that information to select donors, and their preferences for, and reaction to, various types of information provided to them. Understanding gleaned from interviews can deepen existing knowledge of the experience of third-party reproduction from the recipient parent perspective, and can inform practice recommendations and guidelines on the provision of donor information to intended parents.
Materials and methods In-depth, semi-structured interviews were conducted with women who were donor oocyte recipients between 1995 and 2011. Interviews were conducted as part of a grounded theory study (Charmaz, 2006) that sought to understand the contexts and contingencies that influenced recipients’ desire to have, or not to have, information about donors. The research was approved by the Institutional Review Board of Weill Cornell Medical College (number 1105011720, approved 17 June, 2011) and The New School (number 1032012, approved 9 October 2012) before participant recruitment. The technique of purposeful sampling (Patton, 2002), a nonprobability sampling technique in which cases are recruited according to relevant respondent
Page 5 of 25
6
characteristics, was used. Purposive sampling is a common technique used in qualitative studies, in which the intent of the research is not to make statistical generalizations but, rather, to gain more in-depth understanding of a particular phenomenon or experience. In the present study, a stratified purposeful technique was used in which, as much as possible, the aim was to recruit a sample that was stratified across relevant study dimensions to capture a wide range of experiences and perspectives among donor oocyte recipients. Prospective participants were identified by the physician administrator of the donor egg programme and clinical staff so as to provide a sample of participants with varied times since the procedure and demographic characteristics (e.g. age, race or ethnicity, number of children and time since donation). Among those identified, prospective participants living in the programme’s metropolitan area were contacted by email, phone, or both, with a total of 70 prospective participants contacted, and a 31% rate of participation. Of those contacted, 32 (46%) did not respond to the invitation; 16 (23%) declined, with most reporting that they were ‘too busy’ or ‘had no childcare’; other reasons given included ‘not wanting to dwell’ on the matter, not wanting to discuss ‘a private matter,’ having ‘had a bad experience during that time’ and being pregnant.
After the consent process, participants completed a brief demographic survey followed by an inperson interview, conducted at the clinic, lasting about 45 min to 1.5 h with a trained interviewer. Interviews were audio-recorded and transcribed verbatim by a professional transcription service. Upon receipt, transcripts were reviewed for accuracy by the interviewer. Each participant was given a pseudonym to protect confidentiality (Kaiser, 2009), which was generated by a research assistant alphabetically upon study enrolment.
Page 6 of 25
7
Data analysis proceeded in accordance with procedures and techniques of grounded theory ( Strauss and Corbin, 1990; Charmaz, 2006). Grounded theory methods offer a systematic yet flexible set of procedures to ensure that the study findings are, in fact, ‘grounded’ in the data, rather than the a-priori assumptions of the research team. The constant-comparative method, a key feature of grounded theory research, was used. This method involves a process of continual refinement of the research questions and emergent categories throughout the process of data collection and analysis. By moving back and forth between new data and emerging categories, identifying similarities and differences, the method ensures that the researcher breaks the different categories down again into smaller units of meaning rather than simply building them up. This allows the full complexity and diversity of the data to be recognized (Willig, 2013)
Transcripts were reviewed by the full research team on an ongoing basis, allowing for refinement of the interview protocol as needed. Data analysis began with line-by-line coding, initially carried out by the full research team, which identified the categories of information about oocyte donors that recipients desired and the reasons or functions served by different types of information. The next step of analysis, described as the axial coding stage, was carried out by the first two authors. This stage involved revising, clarifying, and making connections between identified codes and categories, and developing a theoretical framework that describes these connections. This stage revealed a range of conflicts and dilemmas that were connected to having, making use of particular information about oocyte donors, or both, which were further analysed through the process of selective coding (Charmaz, 2006).
The topic of rigor in qualitative research has been explored and debated at length, and multiple
Page 7 of 25
8
standards of quality, informed by varied disciplinary and paradigmatic commitments, coexist. In the present study, evaluative criteria were informed by Lincoln and Guba’s (1985) concept of trustworthiness, which refers to the credibility and confidence in the ‘truth value’ of the findings (p. 290), or whether the data have, in fact, captured the meanings and constructions conveyed by the participants. Credibility of the analysis is supported by the rich and nuanced data gathered and the use of techniques such as negative case analysis. Data were collected until saturation, or the point at which no new themes emerged, which supports the adequacy of the sample. Reflexivity, a transcendent standard of quality across qualitative research approaches, was supported by the interdisciplinary composition of the research team, which included psychologists, a philosopher and a reproductive endocrinologist. The interdisciplinarity of the team necessitated that the researchers clarify and confront any taken for granted assumptions tied to their disciplinary training.
Sociodemographics A total of 22 women were interviewed. Most participants (91%) were married or partnered at the time of the interview. Participants ranged in age at the time of interview from 28–52 years. Efforts were made to stratify sampling to recruit recipients with children of varying ages. Two participants were mid-treatment and had no children, and the remaining all had children conceived through donor oocytes ranging in age from 8 months to 15 years, although most (82%) had children younger than 4 years of age. Participants were highly educated with relatively high income. The most commonly reported religious affiliations were Jewish (59%), Protestant (18%), and Catholic (14%).
Page 8 of 25
9
Results Interviews revealed the type of information that was important to participants, including which donor characteristics they deemed relevant and how they used that information to select a desired donor. Our participants felt that having information about the donors was important to guide selection. They also found that managing a large volume of particular information was challenging and resulted in unexpected costs or negative consequences caused by the fact that the information presented them with a variety of dilemmas that they were forced to confront. Importantly, the dilemmas faced by our participants were present at both the the point of donor selection, and also later in time, as parents considered how to manage information in relation to their donor-conceived children on an ongoing basis.
Below, the ways in which participants used information to meet their needs during the process of selecting donors are presented. How participants understood the role of information in the process of donor selection are described, and two domains of dilemmas that emerged through the analysis are highlighted: ‘paradoxes of choice’ and ‘dilemmas of having information’.
Role of information in selecting oocyte donors Recipients used information about donors in a variety of ways. Most saw information as a means of achieving particular goals in relation to their future child. Two primary goals were shared by most of the participants. One such goal was to increase the chance of having a healthy child. To address this goal, medically related information was seen as particularly important. As Ursula described it:
Page 9 of 25
10
‘I was like, if I’m going to get to choose, then I want as healthy a donor as possible for my child, because why choose someone who everyone has a heart attack at the age of 42? I was, like: I don't want that. I want to try do best for this — I mean, I now have a child, but its future.
Comment [S1]: Author: correct transcription?
Sonya, similarly noted: ‘You want a healthy child, so you want to make sure this person is, comes from, healthy stock.’ A second, widely-shared, goal was ‘passing’ as a genetically related family. Therefore, many participants found information about physical characteristics of the donor particularly relevant, as exemplified by Arielle: ‘Well, I really didn’t want an egg donor to have blue or green eyes because mine are brown, although I do have family members with those colors. But it’s still not me, it’s aunts and uncles and Grandpa. So really someone to more or less have my features, my dark hair, my dark eyes.’ For some participants ‘passing’ involved more than just choosing donors with similar physical characteristics. As Ursula’s remarks indicate, information about educational attainment or hobbies was also thought relevant as a way to ensure the child would fit in with the family. ‘And again, I sort of used the same criteria, which was sort of health, including psychiatric health, and education was important to me, and not that my family is healthy, but it had more to do that education had always been so important in my family and that even if I don’t think it’s the most important thing in the entire world, I kind of wanted my child to fit in somehow [laughs] with my family.’ Others used the information to select donors whose personal and family history was perceived as better than their own. For instance, participants, such as Willa, insisted on the absence of specific diseases in donors’ reported family history in order to neutralize or counter their own familial risk. ‘My biggest thing was health history, medical history. I’m a diabetic, my husband’s a diabetic, my mother was a diabetic, my father’s a diabetic. I just didn’t want somebody that had a history of diabetes in their family… I know there’s still a chance he can get it,
Page 10 of 25
11
but I wanted to limit that chance as much as I could, for his sake. That was a big thing for me, the medical history.’ Information was sometimes framed in the context of needing to be an informed and in-control consumer in an otherwise unpredictable process. Along these lines, Oriana discusses the importance of having a picture of the donor: ‘No one likes to buy things without seeing what something looks like. So this is like a huge purchase [laughs]…’
Although information may be important for participants to make rational decisions when selecting a donor, interviews revealed the ways that information conveyed more to recipients than just objective facts about the donors. Participants used the information they were given to help them build narratives and fantasies of the donor. In the following quotation, Oriana exemplifies how participants would read between the lines of the information given in order to support their preferred assessments of a donor’s characteristics: ‘…and of course [we wanted to know] if she had kids herself. Like that almost like made us feel better if she had a kid…She’s like a young girl, like why she’s doing it? What’s her motive? But if she could have kids herself and just wants to give some of her own eggs we felt like, oh, this is like a really good person. And I wanted somebody who had good traits also. You know, a good person.’
Others, such as Irina, looked for signs within the information given that would indicate that they were selecting the ‘right’ donor: ‘The fact that she was Christian…it had meaning for us, and the fact that she — this was my husband… this is kind of weird, but that she dated someone in the military, because he’s a very big fan of the armed forces. So these were all plusses…, they just enhanced our connection to her initially, whatever that was — that magical connection.’ Although such narratives helped recipients feel connected to donors they selected, they could also backfire, as happened for Irina and her husband who were hoping to conceive another child
Page 11 of 25
12
through donor egg, but found it difficult to identify a second donor with whom they felt the same connection: ‘And we have had two matches that we’ve declined. So this is interesting, because I may sound like — I may be contradicting myself, but having the first child, we were like, “healthy.” But we, when we read the profile, because it was there, we immediately connected with the person. And then the last two, we instinctually had no connection. So that was weird for me too, because I didn’t expect that. We’re kind of trying to sort through if it’s just our way of saying we’re done having children, and we wanted to give this a go and just see if there’s like this magical, intuitive connection.’
Paradoxes of choice Study participants had some options in selecting a donor, and they saw choice as valuable. Indeed, most participants (68%) reported having about the right amount of information to inform their decision, with expressing a desire for more or for less. Recipients, however, also experienced the choice among possible donors, and thus the need for information that would allow them to make informed decisions, as engendering a variety of negative consequences, thus creating paradoxes of choice (Schwartz, 2000; 2004; Schwartz et al., 2002). This paradox captures the ways in which having options undermined, rather than enhanced, the process of choosing. Despite generally positive attitudes about the amount of information received, most participants (55%) expressed at least one instance in which information undermined their experience of choosing. This section describes two such paradoxes faced by our participants: that having more information about the donor resulted in a feeling of dissatisfaction with their options, and that the accessibility of the information created an obligation to make use of it in the selection process.
Dissatisfaction with choices
Page 12 of 25
13
For many of the participants, access to donor information made the search for perfection seem a possibility, and choosing carefully based on this information appeared to be the educated, proactive thing to do. But once presented with this information about the donor, participants had to confront the impossibility of finding a perfect donor. Access to information that would allow them to select a particular donor thus made noticeable that no donor was actually perfect, as Xelda explains: ‘I found it, like, there was nobody really perfect. When I look at people I’m like, “Oh I like this girl and how she looks” and I look at the history and I’m not happy with it. And then I look at this other girl and I mean she doesn’t look as pretty as the other one but she’s smart enough. There was something always negative somehow—it wasn’t perfect. And it was a lot of stress… Because yeah, I put a lot of thought in it, and the truth is that when I look at all these girls I didn’t like anybody. I didn’t like the face or the looks or whatever accomplishment.’ With humor that seemed to mark their discomfort, participants often acknowledged their own imperfections while nonetheless expressing desire for the perfect donor. As Oriana succinctly notes: ‘Once you’re choosing it, nothing’s perfect. It’s not like I’m perfect, but once you’re choosing it you want it to be as close to perfect as possible.’ But the understanding that no donor was, in fact, perfect presented participants with the dilemma of having to choose among ‘imperfect’ donors. For some, this created a feeling of dissatisfaction with the choice, or a feeling of being unsettled, as Ursula describes when asked if she was happy
Comment [S2]: Author: is this what you mean?
with her selection: ‘So it’s not like I wasn’t, I don’t know if happy was the right word. Happy may have been the right word with the second one, but I don’t know if happy was the right word with the first one as much as this seems reasonable. … you can’t have everything that you want in this world, and so at some point.…it’s sort of good enough.’
Responsibility
Page 13 of 25
14
The stress of having to manage the information that was provided made some participants wish that they had less information. But because the information was available and because participants thought that rational decision-making required its use, they felt obliged to access all the information available. For instance, the experience of Xelda is instructive. After initially going through a brokering agency, where a great deal of specific information, including adult photos, had been made available to her, Xelda ultimately decided that it was too overwhelming for her. She therefore chose to go through the Center for Reproductive Medicine, where less information about the donors was available. Nonetheless, she struggled with the decision, feeling both anxious and lonely. She explains: ‘I didn’t like the face or the looks or whatever accomplishment, so to me it was better to look just medical records, psychological evaluations — that was more appealing to me…I have too many things to worry about — the stress, the whole infertility thing — so I was like, I don’t need this to be one more thing. It made me feel a little lonely, like perhaps I’m doing the wrong thing.’
Dilemmas of having information In addition to the previously discussed paradoxes of choice, having information about the prospective donors created concerns for participants in at least three other ways. First, participants were forced to confront the fact that information provided to them did not necessarily convey immutable truths about the donor. Participants struggled with the recognition that the information they received was inherently refracted through the motivations of the donor, the interests of the clinic as well as their own hopes and fears. Second, they came to realize that a single piece of information about a donor could convey multiple meanings, depending on time and context. Finally, information that they perceived as valuable at the point of selection later
Page 14 of 25
15
threatened the distance they wished to keep from the donor. Below are detailed the dilemmas of having information that emerged in our interviews and include examples.
Assessment of trustworthiness Participants experienced a further cost that arose from having access to information necessary to make a choice. Namely, they had to confront the fact that information was good only to the extent that it was reliable. They found it difficult, however, to assess the reliability of the information they were provided. Aware that prospective donors are motivated to ‘look good’ on paper in order to be selected by the clinic and by prospective recipients, respondents felt that information that was self-reported by donors was suspect. Yvonne remarks: ‘Well, you didn’t want them to be too old. And then also there was one donor that was very young and then you worried about, you know, her recent past. And even though you get a lot of information, not everybody’s as honorable and trustworthy, and I can only speak for myself, hopefully you are as well. But all three pieces of paperwork that we were given for all three donors, these women seemed perfect. And actually, the one who wound up being our egg donor, she talked that she had done — smoked pot, you know. She wasn’t perfect.’ Faced with the descriptions about themselves provided by the donors, some of our participants emphasized the limitations of even ‘objective’ information, such as health-related information, and recognized the leap of trust they had to put in the information gathered by the medical institution. Wanda expresses this concern unambiguously: ‘But regarding the health of the child, I was actually really worried about it, but I know they did the thorough testing, and they did the psychological testing as well and this girl seemed — I mean if she was actually truthful in her survey, everything, she seems to be level-headed and fine and there was no — you know, all that kind of mental illness as well as physical genetics and all that kind of stuff, it all seemed to be okay. But the thing is, you [the clinic] wouldn’t take anybody who wasn’t up to snuff anyway. So I had to put my trust in the hospital.’
Page 15 of 25
16
Double meaning One way in which information itself created dilemmas concerned the change in meaning that could be derived from the same information, depending on one’s interests and motivations at a given point in time. Indeed, some of the recipients recognized the ways in which their own experiences and biases influenced the meaning of information. They saw that information could convey a particular meaning at one time, but a different meaning at a later date. An instance of this is described by Rebecca: ‘She does have children of her own. She was proven. […] It was important; we wanted someone that was proven. […] So she had twins of her own that she did through IVF, so …. It kind of was like an interesting connection.’ But although knowing that the donor had demonstrated fertility (i.e. was proven) was appealing to her, and gave her reassurance at the time of selection, such information acquired a different meaning later when she had to confront the fact that the child had siblings: ‘I mean, I could not love my baby more. I don’t question he’s mine, but there’s a little nagging voice in my head that’s like, “Oh, he’s got brothers and sisters out there.” My husband — we went to his pediatrician appointment last week, and the nurse, for whatever reason said, “Oh, does he have any siblings?” And I like, I mean, I coughed out [an] answer, I’m like, “No.” But he does, possibly. Well, he does, because she’s got children.’ Another instance of this double-meaning is found in the way that selecting for a particular donor was interpreted. As mentioned previously, participants wanted information that would allow them to choose the ‘best’ donor. That same information, however, could later acquire a threatening meaning, as the mother later compares herself to the donor and feels inadequate. As
Comment [S3]: Author change from falls short to inadequate ok?
Xelda explains: ‘When I talk to my children about the egg donation, the person, the donor — I mean, I don’t want them to think she’s the best person in the world [laughs]. I am the best person in the world [laughs].’
Page 16 of 25
17
Therefore, although what the ‘best’ donor meant during the process of selection was positive, when thinking about passing the information about the donor to her child, Xelda interprets that information in a negative way, as she fears her child might think of the donor as better than her.
Threats to distance Information itself also created dilemmas for participants in that it was seen as threatening the emotional distance that recipients wished to have from the donor. Participants, such as Christine struggled with how much information they wanted about the donors: ‘I go back and forth about saying would I have wanted to see a picture or not? Yes and no, because I kind of like the fact — sometimes I like the fact that I have no idea what that person looks like, so I don’t have a picture in my mind — it makes a person exist less to me. So it — I — I can’t think that this person is my child’s mother because this person doesn’t have a face or, or anything, so I think it — in a way, it’s positive.’ Rebecca, expresses this unsettling effect of receiving information about the donor as creating some kind of connection that she did not desire: ‘The first donor that we chose was perfect on paper, and we had the choice to see baby picture. And we chose to come and see it, and it made me uncomfortable. I was like, oh, that’s too — I don’t want to make this — that’s too much connection. I don’t want to see what this person looks like…It definitely was unsettling for me. So when we — the second one, we chose not to see it.’ Relying on information, and finding the right amount and type, was a difficult balance. Recipients wanted sufficient information to feel in control and responsible for their decision about what donor to select, yet the meaning of information proved to unsettle the participants.
Comment [S4]: Author: is this what you mean?
Moreover, although some information helped recipients construct a positive narrative of the donor, too clear an image could challenge the need to keep the donor emotionally distant and abstract.
Page 17 of 25
18
Discussion The role of selection in the process of oocyte donation is an under-studied concern. When it has been studied, the focus has been on the recipients’ values and preferences of the donor’s characteristics (Lindheim and Sauer 1998; Klock and Greenfeld 2004; Frith et al., 2012). Our study moves beyond simply reporting people’s preferences and choices in order to consider the psychological processes involved when using information to select donors. Our findings highlight some of the negative consequences of expanding choices, as experienced by oocyte donor recipients. Whereas receiving information about donors, and having a degree of choice among donors, gave some recipients a sense of control over the process, many also felt burdened by the information they received. These results are consistent with a growing body of research that calls into question the assumption that more information and options are always better, revealing that sometimes more options make a choice less, not more, attractive (Schwartz, 2000). Indeed, in some contexts ‘maximizing’ choices was associated with more regret and less subjective satisfaction (Schwartz et al., 2002). Some of the costs associated with increased options are well recognized, such as the costs on time and effort required to simply choose among a variety of options or those related to acquiring the necessary information to ensure an educated decision. But others, such as the psychological costs faced by our participants, usually receive less attention. These costs, however, need to be taken into account when offering information to oocyte donor patients.
The present study is not the first to ascertain that oocyte recipients report limits on the amount of information they wish to receive about donors. For example, Klock and Greenfield’s U.S. survey
Page 18 of 25
19
of oocyte donation parents included an open-ended item asking parents what else they would have liked to know about their donor (Klock and Greenfeld, 2004). Approximately one-third wrote ‘nothing’, and another one-third did not respond, suggesting that most of their sample did not want more information about the donor than they already had. This also resonates with findings from a recent qualitative study conducted in the UK exploring intended parents’ feelings and wishes about donor information, which found that, in some cases, respondents felt that lacking information was protective (Stuart-Smith et al., 2012).
Our study, however, is the first to provide a detailed account of the ways that recipients use information to select donors, and the particular dilemmas that can arise through the provision of increasing amounts of information for the purposes of selection. Recipients used a range of strategies, both rational and non-rational, to manage the information they received about donors, and the process of selection. Therefore, our findings highlight the ways that information about donors can both support and undermine recipients’ ability to navigate the process of selection psychologically. Information was seen as necessary to make informed and educated decisions. The ability to choose a donor, however, also encouraged a market-oriented view of the process (Spar, 2006), prompting an elusive search for perfection, and making the responsibility of choosing overwhelming for some participants. This was exacerbated for participants who questioned the reliability of the information they received.
Beyond these costs of choice, our findings suggest further challenges associated with information itself. In certain circumstances, information was, in itself, burdensome not because of decisions or actions that it necessitated, but rather because of what it threatened. Namely,
Page 19 of 25
20
certain information made it more difficult to set aside the donor’s involvement in the process of becoming a parent. For example, although some recipients preferred a ‘proven donor’, this information lingered in their lives when considering their child’s genetic half-siblings. Others who had seen photos of the donor carried in their mind the picture they had seen.
Our findings do not identify the optimal amount of information or degree of choice in gamete selection, which likely varies across individuals with different information management styles (Groopman and Hartzband, 2011). Our results, however, present an important challenge to the commonly held assumption that more information is always better. This finding is particularly relevant in a context in which advances in oocyte cryopreservation suggest that more oocyte donation in the future will take place through oocyte banks. Insofar as sperm banking is a model for oocyte banking, it seems possible that oocyte banks will give more detailed information about the donors. Claims about recipients’ ‘right to know’ as part of informed consent may be used to argue for the provision of increasing amounts of information. Given these circumstances, we expect that the paradoxes of choice and the dilemmas of information illustrated in this study will only increase. Clinicians should be aware of psychological challenges that may ensue.
Clinicians should inform those recipients wanting extensive amounts of information about potential donors of research findings about the ‘paradox of choice’ (Schwartz, 2004) before starting the process of donor selection and also during the informed consent process. Although we anticipate that most recipients will be able to successfully navigate these challenges, a significant subset of recipients with more choices are more likely to become stuck in the decision-making process, or experience increased decisional anxiety through the process. Just as
Page 20 of 25
21
clinicians should be careful not to withhold pertinent information about a donor, they may also want to be careful that they do not give too much information. Our study supports prior healthrelated research (Wood et al., 2011) in suggesting the likelihood that, for many recipients, more information is not always better. Future studies could investigate the utility of existing psychological measures designed to assess individual differences in information-seeking under conditions of threat (Miller, 1987) choice (Schwartz et al., 2002), or both, to identify prospective gamete recipients who may be particularly susceptible to the paradox of choice and the dilemmas of information. In the meantime, clinicians can work with recipients to tailor information they choose to receive to their individual needs and preferences, both identifying the relevance of information-seeking to their general decision-making and coping styles, as well as threats that might arise based on the recipients’ unique infertility narrative.
Our findings are limited by several important factors. All our participants were recruited from one centre, and their experiences reflect the practices of this clinic. Such practices, however, are consistent with those of other major infertility centres. Research examining the experiences of recipients using private brokering agencies, where considerably more information may be given, is needed. Despite efforts to recruit a diverse sample, our participants are predominantly white, middle-to-upper class, married, heterosexual and predominantly women. Therefore, the results might fail to capture important concerns of other segments of the population, including unique types of information that might be important or unique dilemmas that may arise. Nonetheless, the socio-demographic background of our participants is consistent with those who generally use these services.
Page 21 of 25
22
The popular idiom ‘knowledge is power’ underlies the common belief that it is generally better to have more information than less, and more options than fewer, particularly when making important life choices. This assumption has been extended to gamete donation (Lindheim and Sauer, 1998). Our work, however, reveals that, although increased information and options might generally be welcome by oocyte donor recipients, it can also present them with dilemmas and costs. In designing programmes and in counselling patients, we can serve our patients best by keeping these dilemmas and costs in mind.
Acknowledgements We thank Danielle Bitterman, Hannah Zornow, Mytra Haerizadeh, Cheryl Sabatino and Rodriq Stubbs for their assistance with participant recruitment, data management and Institutional Review Board support. We are grateful also to Michelle Leve, Laura Joseph, and Elizabeth Grill for conducting interviews and providing clinical insights. Declaration The authors report no financial or commercial conflicts of interest.
Page 22 of 25
23
References Almeling, R. 2013. The Unregulated Sperm Industry. The New York Times, December 1, 2013 . Becker, G., Butler, A. & Nachtigall, R. D. 2005. Resemblance Talk: A Challenge For Parents Whose Children Were Conceived With Donor Gametes In The Us. Soc Sci Med, 61, 1300-9. CDC. 2013. Assisted Reproductive Technology (Art) Report. 2010 National Summary [Online]. Http://Apps.Nccd.Cdc.Gov/Art/Apps/Nationalsummaryreport.Aspx. Charmaz, K. 2006. Constructing grounded theory. Thousand Oaks, Calif.: Sage Publications. Frith, L., Sawyer, N. & Kramer, W. 2012. Forming A Family With Sperm Donation: A Survey Of 244 Non-Biological Parents. Reprod Biomed Online, 24, 709-18. Golombok, S., Blake, L., Casey, P., Roman, G. & Jadva, V. 2013. Children Born Through Reproductive Donation: A Longitudinal Study Of Psychological Adjustment. J Child Psychol Psychiatry, 54, 653-60. Groopman, J. E. & Hartzband, P. 2011. Your Medical Mind : How To Decide What Is Right For You, New York, Penguin Press. Kaiser, K. 2009. Protecting Respondent Confidentiality in Qualitative Research. Qualitative Health Research,19,1632-1641. Keehn, J., Holwell, E., Abdul-Karim, R., Chin, L. J., Leu, C. S., Sauer, M. V. & Klitzman, R. 2012. Recruiting Egg Donors Online: An Analysis Of In Vitro Fertilization Clinic And Agency Websites' Adherence To American Society For Reproductive Medicine Guidelines. Fertil Steril, 98, 995-1000.
Page 23 of 25
24
Klein, J. U. & Sauer, M. V. 2010. Ethics In Egg Donation: Past, Present, And Future. Semin Reprod Med, 28, 322-8. Klock, S. C. & Greenfeld, D. A. 2004. Parents' Knowledge About The Donors And Their Attitudes Toward Disclosure In Oocyte Donation. Hum Reprod, 19, 1575-9. Lincoln, Y. S. & Guba, E. G. 1985. Naturalistic Inquiry, Beverly Hills, Calif., Sage Publications. Lindheim, S. R. & Sauer, M. V. 1998. Expectations Of Recipient Couples Awaiting An Anonymous Oocyte Donor Match. J Assist Reprod Genet, 15, 444-6. Miller, S.M. 1987. Monitoring and blunting - validation of a questionnaire to assess styles of information seeking under threat. Journal of Personality and Social Psychology, 52, 345353. Patton, M.Q. 2002. Qualitative research and evaluation methods.3 ed. Thousand Oaks, Calif.: Sage Publications. Pennings, G. 2000. The Right To Choose Your Donor: A Step Towards Commercialization Or A Step Towards Empowering The Patient? Hum Reprod, 15, 508-14. Schwartz, B. 2000. Self-Determination. The Tyranny Of Freedom. Am Psychol, 55, 79-88. Schwartz, B. 2004. The Paradox Of Choice : Why More Is Less, New York, Ecco. Schwartz, B., Ward, A., Monterosso, J., Lyubomirsky, S., White, K. & Lehman, D. 2002. Maximizing Versus Satisficing: Happiness Is A Matter Of Choice. Journal Of Personality And Social Psychology, 83, 1178-1197. Spar, D. L. 2006. The Baby Business : How Money, Science, And Politics Drive The Commerce Of Conception, Boston, Harvard Business School Press. Strauss, A. L. & Corbin, J. M. 1990. Basics Of Qualitative Research : Grounded Theory Procedures And Techniques, Newbury Park, Calif., Sage Publications.
Page 24 of 25
25
Stuart-Smith, S. J., Smith, J. A. & Scott, E. J. 2012. To Know Or Not To Know? Dilemmas For Women Receiving Unknown Oocyte Donation. Hum Reprod, 27, 2067-75. Willig, C. 2013. Introducing qualitative research in psychology. Berkshire: Open University Press. Wood, S, Hanoch, Y, Barnes, A, Liu, P-J, Cummings, J, Bhattacharya, C, and Rice, T. 2011. Numeracy and Medicare Part D: The Importance of Choice and Literacy for Numbers in Optimizing Decision Making for Medicare's Prescription Drug Program. Psychology and Aging, 26, 295-307.
Page 25 of 25
S1472-6483(14)00679-8 http://dx.doi.org/doi: 10.1016/j.rbmo.2014.11.017 RBMO 1280
To appear in:
Reproductive BioMedicine Online
Received date: Revised date: Accepted date:
19-6-2014 14-11-2014 20-11-2014
Please cite this article as: Lisa R. Rubin, Inmaculada de Melo-Martin, Zev Rosenwaks, Ina N. Cholst, Once you're choosing, nobody's perfect: is more information necessarily better in oocyte donor selection?, Reproductive BioMedicine Online (2014), http://dx.doi.org/doi: 10.1016/j.rbmo.2014.11.017. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
1
Short title: Information on oocyte donor selection
Once you’re choosing, nobody’s perfect: is more information necessarily better in oocyte donor selection?
Lisa R. Rubina,1 Inmaculada de Melo-Martin,b,*,1 Zev Rosenwaks,c Ina N. Cholstc
a
New School for Social Research, Department of Psychology, New York, NY 10011, USA Weill Cornell Medical College, Division of Medical Ethics, New York, NY 10065, USA c Weill Cornell Medical College, The Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine, New York, NY 10065, USA b
1
Both authors contributed equally to the paper.
*Corresponding author: Inmaculada de Melo-Martín, PhD, MS, Professor of Medical Ethics Division of Medical Ethics, Weill Cornell Medical College, Cornell University, 402 East 67th Street, New York, NY 10065-6304, USA. Tel: +011-646-962-8031; Fax: +011-646-962-0281; E-mail address: [email protected]
Lisa R. Rubin, PhD, is an Associate Professor of Psychology at the New School for Social Research in New York City. Her research and clinical interests in reproductive medicine focus on the intersection of ethical, social and psychological concerns within the context of new reproductive technologies.
Page 1 of 25
2
Page 2 of 25
3
Abstract Despite a growing body of research examining the psychosocial issues involved in oocyte donation, few studies have examined the role of information in the process of donor selection. The aim of this interview-based qualitative study was to understand how donor oocyte recipients relate to information provided about potential oocyte donors, how they use this information to select donors and their preferences for, and reactions to, various types of information provided to them. Donor oocyte recipients who underwent treatment between 1995 and 2011 were recruited for participation from an academic centre for reproductive medicine. Twenty-two oocyte donor recipients participated. Findings indicate that recipients use information to select donors who they believe would enable them to fulfill their priorities: having a healthy child and ‘passing’ as genetically related. Obtaining more specific information prompted a focus on donor imperfections and presented a burden of choosing. Moreover, for participants preferring distance, having more information created dilemmas by making the donors less abstract. Although more information and options are often desired by oocyte donor recipients, increased choice can also present psychological dilemmas and emotional costs. Further research is needed to investigate the influence of information-related conflicts on patient decision-making, post-treatment emotional adjustment and disclosure decisions.
KEYWORDS: oocyte donation, donor selection, information use, qualitative
Page 3 of 25
4
Introduction Although the use of donated oocytes is an increasingly common treatment for women facing infertility (CDC, 2013), donor selection practices vary widely, both in the USA and the rest of the world. Globally, such practices are influenced by nation-specific regulations and the availability of donors. For example, in Spain, legislation (Law 14/2006- Human Assisted Reproduction Techniques) regulates remunerative aspects of the process and also, specifically, prohibits the selection of the donor by the recipient. In contrast, although the availability of donors is far from unlimited, intended parents in the USA generally have more latitude to select donors with specific qualities. Moreover, the selection detail available to the recipient is likely to increase in the upcoming years, as the technology and organizational model moves toward oocyte banking (Almeling, 2013).
Recognition of the range of psychosocial and ethical issues that accompany donor oocyte practices is increasing, focusing on matters such as parents’ disclosure of the means of conception to donor-conceived children and questions about appropriate compensation for oocyte providers (Klein and Sauer, 2010; Keehn, et al., 2012; Golombok, et al., 2013). Less attention, however, has been given to some of the more nuanced, but nonetheless important, aspects of the process, such as the nature (e.g. type and quantity) of information about the donor that is provided to intended parents, and how the selection process is experienced by recipients, particularly in the context of oocyte donation (Lindheim and Sauer, 1998; Pennings, 2000;
Page 4 of 25
5
Becker et al., 2005; Stuart-Smith et al., 2012). In the USA, a variety of models of information provision co-exist, ranging from the most basic, such as medical history and appearance, to the extremely detailed, such as adult photos and videos. Additionally, in the USA, donation may be completely anonymous, may be anonymous but include the possibility of identity release to the donor conceived child on reaching adulthood, or may be a known donation.
The present study draws on in-depth interviews with donor oocyte recipients with the aims of developing a richer understanding of how recipients relate to information provided to them about potential oocyte donors, including how they use that information to select donors, and their preferences for, and reaction to, various types of information provided to them. Understanding gleaned from interviews can deepen existing knowledge of the experience of third-party reproduction from the recipient parent perspective, and can inform practice recommendations and guidelines on the provision of donor information to intended parents.
Materials and methods In-depth, semi-structured interviews were conducted with women who were donor oocyte recipients between 1995 and 2011. Interviews were conducted as part of a grounded theory study (Charmaz, 2006) that sought to understand the contexts and contingencies that influenced recipients’ desire to have, or not to have, information about donors. The research was approved by the Institutional Review Board of Weill Cornell Medical College (number 1105011720, approved 17 June, 2011) and The New School (number 1032012, approved 9 October 2012) before participant recruitment. The technique of purposeful sampling (Patton, 2002), a nonprobability sampling technique in which cases are recruited according to relevant respondent
Page 5 of 25
6
characteristics, was used. Purposive sampling is a common technique used in qualitative studies, in which the intent of the research is not to make statistical generalizations but, rather, to gain more in-depth understanding of a particular phenomenon or experience. In the present study, a stratified purposeful technique was used in which, as much as possible, the aim was to recruit a sample that was stratified across relevant study dimensions to capture a wide range of experiences and perspectives among donor oocyte recipients. Prospective participants were identified by the physician administrator of the donor egg programme and clinical staff so as to provide a sample of participants with varied times since the procedure and demographic characteristics (e.g. age, race or ethnicity, number of children and time since donation). Among those identified, prospective participants living in the programme’s metropolitan area were contacted by email, phone, or both, with a total of 70 prospective participants contacted, and a 31% rate of participation. Of those contacted, 32 (46%) did not respond to the invitation; 16 (23%) declined, with most reporting that they were ‘too busy’ or ‘had no childcare’; other reasons given included ‘not wanting to dwell’ on the matter, not wanting to discuss ‘a private matter,’ having ‘had a bad experience during that time’ and being pregnant.
After the consent process, participants completed a brief demographic survey followed by an inperson interview, conducted at the clinic, lasting about 45 min to 1.5 h with a trained interviewer. Interviews were audio-recorded and transcribed verbatim by a professional transcription service. Upon receipt, transcripts were reviewed for accuracy by the interviewer. Each participant was given a pseudonym to protect confidentiality (Kaiser, 2009), which was generated by a research assistant alphabetically upon study enrolment.
Page 6 of 25
7
Data analysis proceeded in accordance with procedures and techniques of grounded theory ( Strauss and Corbin, 1990; Charmaz, 2006). Grounded theory methods offer a systematic yet flexible set of procedures to ensure that the study findings are, in fact, ‘grounded’ in the data, rather than the a-priori assumptions of the research team. The constant-comparative method, a key feature of grounded theory research, was used. This method involves a process of continual refinement of the research questions and emergent categories throughout the process of data collection and analysis. By moving back and forth between new data and emerging categories, identifying similarities and differences, the method ensures that the researcher breaks the different categories down again into smaller units of meaning rather than simply building them up. This allows the full complexity and diversity of the data to be recognized (Willig, 2013)
Transcripts were reviewed by the full research team on an ongoing basis, allowing for refinement of the interview protocol as needed. Data analysis began with line-by-line coding, initially carried out by the full research team, which identified the categories of information about oocyte donors that recipients desired and the reasons or functions served by different types of information. The next step of analysis, described as the axial coding stage, was carried out by the first two authors. This stage involved revising, clarifying, and making connections between identified codes and categories, and developing a theoretical framework that describes these connections. This stage revealed a range of conflicts and dilemmas that were connected to having, making use of particular information about oocyte donors, or both, which were further analysed through the process of selective coding (Charmaz, 2006).
The topic of rigor in qualitative research has been explored and debated at length, and multiple
Page 7 of 25
8
standards of quality, informed by varied disciplinary and paradigmatic commitments, coexist. In the present study, evaluative criteria were informed by Lincoln and Guba’s (1985) concept of trustworthiness, which refers to the credibility and confidence in the ‘truth value’ of the findings (p. 290), or whether the data have, in fact, captured the meanings and constructions conveyed by the participants. Credibility of the analysis is supported by the rich and nuanced data gathered and the use of techniques such as negative case analysis. Data were collected until saturation, or the point at which no new themes emerged, which supports the adequacy of the sample. Reflexivity, a transcendent standard of quality across qualitative research approaches, was supported by the interdisciplinary composition of the research team, which included psychologists, a philosopher and a reproductive endocrinologist. The interdisciplinarity of the team necessitated that the researchers clarify and confront any taken for granted assumptions tied to their disciplinary training.
Sociodemographics A total of 22 women were interviewed. Most participants (91%) were married or partnered at the time of the interview. Participants ranged in age at the time of interview from 28–52 years. Efforts were made to stratify sampling to recruit recipients with children of varying ages. Two participants were mid-treatment and had no children, and the remaining all had children conceived through donor oocytes ranging in age from 8 months to 15 years, although most (82%) had children younger than 4 years of age. Participants were highly educated with relatively high income. The most commonly reported religious affiliations were Jewish (59%), Protestant (18%), and Catholic (14%).
Page 8 of 25
9
Results Interviews revealed the type of information that was important to participants, including which donor characteristics they deemed relevant and how they used that information to select a desired donor. Our participants felt that having information about the donors was important to guide selection. They also found that managing a large volume of particular information was challenging and resulted in unexpected costs or negative consequences caused by the fact that the information presented them with a variety of dilemmas that they were forced to confront. Importantly, the dilemmas faced by our participants were present at both the the point of donor selection, and also later in time, as parents considered how to manage information in relation to their donor-conceived children on an ongoing basis.
Below, the ways in which participants used information to meet their needs during the process of selecting donors are presented. How participants understood the role of information in the process of donor selection are described, and two domains of dilemmas that emerged through the analysis are highlighted: ‘paradoxes of choice’ and ‘dilemmas of having information’.
Role of information in selecting oocyte donors Recipients used information about donors in a variety of ways. Most saw information as a means of achieving particular goals in relation to their future child. Two primary goals were shared by most of the participants. One such goal was to increase the chance of having a healthy child. To address this goal, medically related information was seen as particularly important. As Ursula described it:
Page 9 of 25
10
‘I was like, if I’m going to get to choose, then I want as healthy a donor as possible for my child, because why choose someone who everyone has a heart attack at the age of 42? I was, like: I don't want that. I want to try do best for this — I mean, I now have a child, but its future.
Comment [S1]: Author: correct transcription?
Sonya, similarly noted: ‘You want a healthy child, so you want to make sure this person is, comes from, healthy stock.’ A second, widely-shared, goal was ‘passing’ as a genetically related family. Therefore, many participants found information about physical characteristics of the donor particularly relevant, as exemplified by Arielle: ‘Well, I really didn’t want an egg donor to have blue or green eyes because mine are brown, although I do have family members with those colors. But it’s still not me, it’s aunts and uncles and Grandpa. So really someone to more or less have my features, my dark hair, my dark eyes.’ For some participants ‘passing’ involved more than just choosing donors with similar physical characteristics. As Ursula’s remarks indicate, information about educational attainment or hobbies was also thought relevant as a way to ensure the child would fit in with the family. ‘And again, I sort of used the same criteria, which was sort of health, including psychiatric health, and education was important to me, and not that my family is healthy, but it had more to do that education had always been so important in my family and that even if I don’t think it’s the most important thing in the entire world, I kind of wanted my child to fit in somehow [laughs] with my family.’ Others used the information to select donors whose personal and family history was perceived as better than their own. For instance, participants, such as Willa, insisted on the absence of specific diseases in donors’ reported family history in order to neutralize or counter their own familial risk. ‘My biggest thing was health history, medical history. I’m a diabetic, my husband’s a diabetic, my mother was a diabetic, my father’s a diabetic. I just didn’t want somebody that had a history of diabetes in their family… I know there’s still a chance he can get it,
Page 10 of 25
11
but I wanted to limit that chance as much as I could, for his sake. That was a big thing for me, the medical history.’ Information was sometimes framed in the context of needing to be an informed and in-control consumer in an otherwise unpredictable process. Along these lines, Oriana discusses the importance of having a picture of the donor: ‘No one likes to buy things without seeing what something looks like. So this is like a huge purchase [laughs]…’
Although information may be important for participants to make rational decisions when selecting a donor, interviews revealed the ways that information conveyed more to recipients than just objective facts about the donors. Participants used the information they were given to help them build narratives and fantasies of the donor. In the following quotation, Oriana exemplifies how participants would read between the lines of the information given in order to support their preferred assessments of a donor’s characteristics: ‘…and of course [we wanted to know] if she had kids herself. Like that almost like made us feel better if she had a kid…She’s like a young girl, like why she’s doing it? What’s her motive? But if she could have kids herself and just wants to give some of her own eggs we felt like, oh, this is like a really good person. And I wanted somebody who had good traits also. You know, a good person.’
Others, such as Irina, looked for signs within the information given that would indicate that they were selecting the ‘right’ donor: ‘The fact that she was Christian…it had meaning for us, and the fact that she — this was my husband… this is kind of weird, but that she dated someone in the military, because he’s a very big fan of the armed forces. So these were all plusses…, they just enhanced our connection to her initially, whatever that was — that magical connection.’ Although such narratives helped recipients feel connected to donors they selected, they could also backfire, as happened for Irina and her husband who were hoping to conceive another child
Page 11 of 25
12
through donor egg, but found it difficult to identify a second donor with whom they felt the same connection: ‘And we have had two matches that we’ve declined. So this is interesting, because I may sound like — I may be contradicting myself, but having the first child, we were like, “healthy.” But we, when we read the profile, because it was there, we immediately connected with the person. And then the last two, we instinctually had no connection. So that was weird for me too, because I didn’t expect that. We’re kind of trying to sort through if it’s just our way of saying we’re done having children, and we wanted to give this a go and just see if there’s like this magical, intuitive connection.’
Paradoxes of choice Study participants had some options in selecting a donor, and they saw choice as valuable. Indeed, most participants (68%) reported having about the right amount of information to inform their decision, with expressing a desire for more or for less. Recipients, however, also experienced the choice among possible donors, and thus the need for information that would allow them to make informed decisions, as engendering a variety of negative consequences, thus creating paradoxes of choice (Schwartz, 2000; 2004; Schwartz et al., 2002). This paradox captures the ways in which having options undermined, rather than enhanced, the process of choosing. Despite generally positive attitudes about the amount of information received, most participants (55%) expressed at least one instance in which information undermined their experience of choosing. This section describes two such paradoxes faced by our participants: that having more information about the donor resulted in a feeling of dissatisfaction with their options, and that the accessibility of the information created an obligation to make use of it in the selection process.
Dissatisfaction with choices
Page 12 of 25
13
For many of the participants, access to donor information made the search for perfection seem a possibility, and choosing carefully based on this information appeared to be the educated, proactive thing to do. But once presented with this information about the donor, participants had to confront the impossibility of finding a perfect donor. Access to information that would allow them to select a particular donor thus made noticeable that no donor was actually perfect, as Xelda explains: ‘I found it, like, there was nobody really perfect. When I look at people I’m like, “Oh I like this girl and how she looks” and I look at the history and I’m not happy with it. And then I look at this other girl and I mean she doesn’t look as pretty as the other one but she’s smart enough. There was something always negative somehow—it wasn’t perfect. And it was a lot of stress… Because yeah, I put a lot of thought in it, and the truth is that when I look at all these girls I didn’t like anybody. I didn’t like the face or the looks or whatever accomplishment.’ With humor that seemed to mark their discomfort, participants often acknowledged their own imperfections while nonetheless expressing desire for the perfect donor. As Oriana succinctly notes: ‘Once you’re choosing it, nothing’s perfect. It’s not like I’m perfect, but once you’re choosing it you want it to be as close to perfect as possible.’ But the understanding that no donor was, in fact, perfect presented participants with the dilemma of having to choose among ‘imperfect’ donors. For some, this created a feeling of dissatisfaction with the choice, or a feeling of being unsettled, as Ursula describes when asked if she was happy
Comment [S2]: Author: is this what you mean?
with her selection: ‘So it’s not like I wasn’t, I don’t know if happy was the right word. Happy may have been the right word with the second one, but I don’t know if happy was the right word with the first one as much as this seems reasonable. … you can’t have everything that you want in this world, and so at some point.…it’s sort of good enough.’
Responsibility
Page 13 of 25
14
The stress of having to manage the information that was provided made some participants wish that they had less information. But because the information was available and because participants thought that rational decision-making required its use, they felt obliged to access all the information available. For instance, the experience of Xelda is instructive. After initially going through a brokering agency, where a great deal of specific information, including adult photos, had been made available to her, Xelda ultimately decided that it was too overwhelming for her. She therefore chose to go through the Center for Reproductive Medicine, where less information about the donors was available. Nonetheless, she struggled with the decision, feeling both anxious and lonely. She explains: ‘I didn’t like the face or the looks or whatever accomplishment, so to me it was better to look just medical records, psychological evaluations — that was more appealing to me…I have too many things to worry about — the stress, the whole infertility thing — so I was like, I don’t need this to be one more thing. It made me feel a little lonely, like perhaps I’m doing the wrong thing.’
Dilemmas of having information In addition to the previously discussed paradoxes of choice, having information about the prospective donors created concerns for participants in at least three other ways. First, participants were forced to confront the fact that information provided to them did not necessarily convey immutable truths about the donor. Participants struggled with the recognition that the information they received was inherently refracted through the motivations of the donor, the interests of the clinic as well as their own hopes and fears. Second, they came to realize that a single piece of information about a donor could convey multiple meanings, depending on time and context. Finally, information that they perceived as valuable at the point of selection later
Page 14 of 25
15
threatened the distance they wished to keep from the donor. Below are detailed the dilemmas of having information that emerged in our interviews and include examples.
Assessment of trustworthiness Participants experienced a further cost that arose from having access to information necessary to make a choice. Namely, they had to confront the fact that information was good only to the extent that it was reliable. They found it difficult, however, to assess the reliability of the information they were provided. Aware that prospective donors are motivated to ‘look good’ on paper in order to be selected by the clinic and by prospective recipients, respondents felt that information that was self-reported by donors was suspect. Yvonne remarks: ‘Well, you didn’t want them to be too old. And then also there was one donor that was very young and then you worried about, you know, her recent past. And even though you get a lot of information, not everybody’s as honorable and trustworthy, and I can only speak for myself, hopefully you are as well. But all three pieces of paperwork that we were given for all three donors, these women seemed perfect. And actually, the one who wound up being our egg donor, she talked that she had done — smoked pot, you know. She wasn’t perfect.’ Faced with the descriptions about themselves provided by the donors, some of our participants emphasized the limitations of even ‘objective’ information, such as health-related information, and recognized the leap of trust they had to put in the information gathered by the medical institution. Wanda expresses this concern unambiguously: ‘But regarding the health of the child, I was actually really worried about it, but I know they did the thorough testing, and they did the psychological testing as well and this girl seemed — I mean if she was actually truthful in her survey, everything, she seems to be level-headed and fine and there was no — you know, all that kind of mental illness as well as physical genetics and all that kind of stuff, it all seemed to be okay. But the thing is, you [the clinic] wouldn’t take anybody who wasn’t up to snuff anyway. So I had to put my trust in the hospital.’
Page 15 of 25
16
Double meaning One way in which information itself created dilemmas concerned the change in meaning that could be derived from the same information, depending on one’s interests and motivations at a given point in time. Indeed, some of the recipients recognized the ways in which their own experiences and biases influenced the meaning of information. They saw that information could convey a particular meaning at one time, but a different meaning at a later date. An instance of this is described by Rebecca: ‘She does have children of her own. She was proven. […] It was important; we wanted someone that was proven. […] So she had twins of her own that she did through IVF, so …. It kind of was like an interesting connection.’ But although knowing that the donor had demonstrated fertility (i.e. was proven) was appealing to her, and gave her reassurance at the time of selection, such information acquired a different meaning later when she had to confront the fact that the child had siblings: ‘I mean, I could not love my baby more. I don’t question he’s mine, but there’s a little nagging voice in my head that’s like, “Oh, he’s got brothers and sisters out there.” My husband — we went to his pediatrician appointment last week, and the nurse, for whatever reason said, “Oh, does he have any siblings?” And I like, I mean, I coughed out [an] answer, I’m like, “No.” But he does, possibly. Well, he does, because she’s got children.’ Another instance of this double-meaning is found in the way that selecting for a particular donor was interpreted. As mentioned previously, participants wanted information that would allow them to choose the ‘best’ donor. That same information, however, could later acquire a threatening meaning, as the mother later compares herself to the donor and feels inadequate. As
Comment [S3]: Author change from falls short to inadequate ok?
Xelda explains: ‘When I talk to my children about the egg donation, the person, the donor — I mean, I don’t want them to think she’s the best person in the world [laughs]. I am the best person in the world [laughs].’
Page 16 of 25
17
Therefore, although what the ‘best’ donor meant during the process of selection was positive, when thinking about passing the information about the donor to her child, Xelda interprets that information in a negative way, as she fears her child might think of the donor as better than her.
Threats to distance Information itself also created dilemmas for participants in that it was seen as threatening the emotional distance that recipients wished to have from the donor. Participants, such as Christine struggled with how much information they wanted about the donors: ‘I go back and forth about saying would I have wanted to see a picture or not? Yes and no, because I kind of like the fact — sometimes I like the fact that I have no idea what that person looks like, so I don’t have a picture in my mind — it makes a person exist less to me. So it — I — I can’t think that this person is my child’s mother because this person doesn’t have a face or, or anything, so I think it — in a way, it’s positive.’ Rebecca, expresses this unsettling effect of receiving information about the donor as creating some kind of connection that she did not desire: ‘The first donor that we chose was perfect on paper, and we had the choice to see baby picture. And we chose to come and see it, and it made me uncomfortable. I was like, oh, that’s too — I don’t want to make this — that’s too much connection. I don’t want to see what this person looks like…It definitely was unsettling for me. So when we — the second one, we chose not to see it.’ Relying on information, and finding the right amount and type, was a difficult balance. Recipients wanted sufficient information to feel in control and responsible for their decision about what donor to select, yet the meaning of information proved to unsettle the participants.
Comment [S4]: Author: is this what you mean?
Moreover, although some information helped recipients construct a positive narrative of the donor, too clear an image could challenge the need to keep the donor emotionally distant and abstract.
Page 17 of 25
18
Discussion The role of selection in the process of oocyte donation is an under-studied concern. When it has been studied, the focus has been on the recipients’ values and preferences of the donor’s characteristics (Lindheim and Sauer 1998; Klock and Greenfeld 2004; Frith et al., 2012). Our study moves beyond simply reporting people’s preferences and choices in order to consider the psychological processes involved when using information to select donors. Our findings highlight some of the negative consequences of expanding choices, as experienced by oocyte donor recipients. Whereas receiving information about donors, and having a degree of choice among donors, gave some recipients a sense of control over the process, many also felt burdened by the information they received. These results are consistent with a growing body of research that calls into question the assumption that more information and options are always better, revealing that sometimes more options make a choice less, not more, attractive (Schwartz, 2000). Indeed, in some contexts ‘maximizing’ choices was associated with more regret and less subjective satisfaction (Schwartz et al., 2002). Some of the costs associated with increased options are well recognized, such as the costs on time and effort required to simply choose among a variety of options or those related to acquiring the necessary information to ensure an educated decision. But others, such as the psychological costs faced by our participants, usually receive less attention. These costs, however, need to be taken into account when offering information to oocyte donor patients.
The present study is not the first to ascertain that oocyte recipients report limits on the amount of information they wish to receive about donors. For example, Klock and Greenfield’s U.S. survey
Page 18 of 25
19
of oocyte donation parents included an open-ended item asking parents what else they would have liked to know about their donor (Klock and Greenfeld, 2004). Approximately one-third wrote ‘nothing’, and another one-third did not respond, suggesting that most of their sample did not want more information about the donor than they already had. This also resonates with findings from a recent qualitative study conducted in the UK exploring intended parents’ feelings and wishes about donor information, which found that, in some cases, respondents felt that lacking information was protective (Stuart-Smith et al., 2012).
Our study, however, is the first to provide a detailed account of the ways that recipients use information to select donors, and the particular dilemmas that can arise through the provision of increasing amounts of information for the purposes of selection. Recipients used a range of strategies, both rational and non-rational, to manage the information they received about donors, and the process of selection. Therefore, our findings highlight the ways that information about donors can both support and undermine recipients’ ability to navigate the process of selection psychologically. Information was seen as necessary to make informed and educated decisions. The ability to choose a donor, however, also encouraged a market-oriented view of the process (Spar, 2006), prompting an elusive search for perfection, and making the responsibility of choosing overwhelming for some participants. This was exacerbated for participants who questioned the reliability of the information they received.
Beyond these costs of choice, our findings suggest further challenges associated with information itself. In certain circumstances, information was, in itself, burdensome not because of decisions or actions that it necessitated, but rather because of what it threatened. Namely,
Page 19 of 25
20
certain information made it more difficult to set aside the donor’s involvement in the process of becoming a parent. For example, although some recipients preferred a ‘proven donor’, this information lingered in their lives when considering their child’s genetic half-siblings. Others who had seen photos of the donor carried in their mind the picture they had seen.
Our findings do not identify the optimal amount of information or degree of choice in gamete selection, which likely varies across individuals with different information management styles (Groopman and Hartzband, 2011). Our results, however, present an important challenge to the commonly held assumption that more information is always better. This finding is particularly relevant in a context in which advances in oocyte cryopreservation suggest that more oocyte donation in the future will take place through oocyte banks. Insofar as sperm banking is a model for oocyte banking, it seems possible that oocyte banks will give more detailed information about the donors. Claims about recipients’ ‘right to know’ as part of informed consent may be used to argue for the provision of increasing amounts of information. Given these circumstances, we expect that the paradoxes of choice and the dilemmas of information illustrated in this study will only increase. Clinicians should be aware of psychological challenges that may ensue.
Clinicians should inform those recipients wanting extensive amounts of information about potential donors of research findings about the ‘paradox of choice’ (Schwartz, 2004) before starting the process of donor selection and also during the informed consent process. Although we anticipate that most recipients will be able to successfully navigate these challenges, a significant subset of recipients with more choices are more likely to become stuck in the decision-making process, or experience increased decisional anxiety through the process. Just as
Page 20 of 25
21
clinicians should be careful not to withhold pertinent information about a donor, they may also want to be careful that they do not give too much information. Our study supports prior healthrelated research (Wood et al., 2011) in suggesting the likelihood that, for many recipients, more information is not always better. Future studies could investigate the utility of existing psychological measures designed to assess individual differences in information-seeking under conditions of threat (Miller, 1987) choice (Schwartz et al., 2002), or both, to identify prospective gamete recipients who may be particularly susceptible to the paradox of choice and the dilemmas of information. In the meantime, clinicians can work with recipients to tailor information they choose to receive to their individual needs and preferences, both identifying the relevance of information-seeking to their general decision-making and coping styles, as well as threats that might arise based on the recipients’ unique infertility narrative.
Our findings are limited by several important factors. All our participants were recruited from one centre, and their experiences reflect the practices of this clinic. Such practices, however, are consistent with those of other major infertility centres. Research examining the experiences of recipients using private brokering agencies, where considerably more information may be given, is needed. Despite efforts to recruit a diverse sample, our participants are predominantly white, middle-to-upper class, married, heterosexual and predominantly women. Therefore, the results might fail to capture important concerns of other segments of the population, including unique types of information that might be important or unique dilemmas that may arise. Nonetheless, the socio-demographic background of our participants is consistent with those who generally use these services.
Page 21 of 25
22
The popular idiom ‘knowledge is power’ underlies the common belief that it is generally better to have more information than less, and more options than fewer, particularly when making important life choices. This assumption has been extended to gamete donation (Lindheim and Sauer, 1998). Our work, however, reveals that, although increased information and options might generally be welcome by oocyte donor recipients, it can also present them with dilemmas and costs. In designing programmes and in counselling patients, we can serve our patients best by keeping these dilemmas and costs in mind.
Acknowledgements We thank Danielle Bitterman, Hannah Zornow, Mytra Haerizadeh, Cheryl Sabatino and Rodriq Stubbs for their assistance with participant recruitment, data management and Institutional Review Board support. We are grateful also to Michelle Leve, Laura Joseph, and Elizabeth Grill for conducting interviews and providing clinical insights. Declaration The authors report no financial or commercial conflicts of interest.
Page 22 of 25
23
References Almeling, R. 2013. The Unregulated Sperm Industry. The New York Times, December 1, 2013 . Becker, G., Butler, A. & Nachtigall, R. D. 2005. Resemblance Talk: A Challenge For Parents Whose Children Were Conceived With Donor Gametes In The Us. Soc Sci Med, 61, 1300-9. CDC. 2013. Assisted Reproductive Technology (Art) Report. 2010 National Summary [Online]. Http://Apps.Nccd.Cdc.Gov/Art/Apps/Nationalsummaryreport.Aspx. Charmaz, K. 2006. Constructing grounded theory. Thousand Oaks, Calif.: Sage Publications. Frith, L., Sawyer, N. & Kramer, W. 2012. Forming A Family With Sperm Donation: A Survey Of 244 Non-Biological Parents. Reprod Biomed Online, 24, 709-18. Golombok, S., Blake, L., Casey, P., Roman, G. & Jadva, V. 2013. Children Born Through Reproductive Donation: A Longitudinal Study Of Psychological Adjustment. J Child Psychol Psychiatry, 54, 653-60. Groopman, J. E. & Hartzband, P. 2011. Your Medical Mind : How To Decide What Is Right For You, New York, Penguin Press. Kaiser, K. 2009. Protecting Respondent Confidentiality in Qualitative Research. Qualitative Health Research,19,1632-1641. Keehn, J., Holwell, E., Abdul-Karim, R., Chin, L. J., Leu, C. S., Sauer, M. V. & Klitzman, R. 2012. Recruiting Egg Donors Online: An Analysis Of In Vitro Fertilization Clinic And Agency Websites' Adherence To American Society For Reproductive Medicine Guidelines. Fertil Steril, 98, 995-1000.
Page 23 of 25
24
Klein, J. U. & Sauer, M. V. 2010. Ethics In Egg Donation: Past, Present, And Future. Semin Reprod Med, 28, 322-8. Klock, S. C. & Greenfeld, D. A. 2004. Parents' Knowledge About The Donors And Their Attitudes Toward Disclosure In Oocyte Donation. Hum Reprod, 19, 1575-9. Lincoln, Y. S. & Guba, E. G. 1985. Naturalistic Inquiry, Beverly Hills, Calif., Sage Publications. Lindheim, S. R. & Sauer, M. V. 1998. Expectations Of Recipient Couples Awaiting An Anonymous Oocyte Donor Match. J Assist Reprod Genet, 15, 444-6. Miller, S.M. 1987. Monitoring and blunting - validation of a questionnaire to assess styles of information seeking under threat. Journal of Personality and Social Psychology, 52, 345353. Patton, M.Q. 2002. Qualitative research and evaluation methods.3 ed. Thousand Oaks, Calif.: Sage Publications. Pennings, G. 2000. The Right To Choose Your Donor: A Step Towards Commercialization Or A Step Towards Empowering The Patient? Hum Reprod, 15, 508-14. Schwartz, B. 2000. Self-Determination. The Tyranny Of Freedom. Am Psychol, 55, 79-88. Schwartz, B. 2004. The Paradox Of Choice : Why More Is Less, New York, Ecco. Schwartz, B., Ward, A., Monterosso, J., Lyubomirsky, S., White, K. & Lehman, D. 2002. Maximizing Versus Satisficing: Happiness Is A Matter Of Choice. Journal Of Personality And Social Psychology, 83, 1178-1197. Spar, D. L. 2006. The Baby Business : How Money, Science, And Politics Drive The Commerce Of Conception, Boston, Harvard Business School Press. Strauss, A. L. & Corbin, J. M. 1990. Basics Of Qualitative Research : Grounded Theory Procedures And Techniques, Newbury Park, Calif., Sage Publications.
Page 24 of 25
25
Stuart-Smith, S. J., Smith, J. A. & Scott, E. J. 2012. To Know Or Not To Know? Dilemmas For Women Receiving Unknown Oocyte Donation. Hum Reprod, 27, 2067-75. Willig, C. 2013. Introducing qualitative research in psychology. Berkshire: Open University Press. Wood, S, Hanoch, Y, Barnes, A, Liu, P-J, Cummings, J, Bhattacharya, C, and Rice, T. 2011. Numeracy and Medicare Part D: The Importance of Choice and Literacy for Numbers in Optimizing Decision Making for Medicare's Prescription Drug Program. Psychology and Aging, 26, 295-307.
Page 25 of 25
