Veerle Provoost

Open-Identity Sperm Donation: How Does Offering Donor-Identifying Information Relate to Donor-Conceived Offspring’s Wishes and Needs?

Over the past years, a growing number of countries have legislated open-identity donation, in which donor-conceived offspring are given access to the donor’s identity once the child has reached maturity. It is held that donor anonymity creates identity problems for such children similar to the “genealogical bewilderment” described within the adoption context. The study of the social and psychological effects of open-identity donation is still very much in its infancy, but what has been left unquestioned is whether (and to what extent) offering access to the donor’s name and address is an adequate response to such effects. This study has two goals: First, we aim to provide a systematic review of the reasons why donor-conceived (DC) offspring want to know the identity of their sperm donor. Second, we examine to what extent the provision of donor-identifying information can satisfy the reasons mentioned. The most important motivations appear to be: (1) to avoid medical risks and consanguineous relationships; (2) to satisfy curiosity; (3) to learn more about the self or to complete one’s identity; (4) to learn more about what kind of person the donor is (biographical information, why he donated, etc.); (5) to form a relationship with the donor and/or his family; and (6) to learn about one’s ancestry/genealogy. Our analysis shows that for nearly all of these reasons access to the donor’s identity is not necessary. In those cases where it is, moreover, donor identification is not sufficient. What is really needed is (extended) contact with the donor, rather than the mere provision of his name.

Reflections of Dutch patients on IVF treatment in Belgium: a qualitative analysis of internet forums

STUDY QUESTION What information is shared on Dutch internet forums with regard to infertility treatment in Belgium? SUMMARY ANSWER The online discussion mainly regards medical treatments, feelings and experiences, and financial implications. The general tone of the discussion on the forums about fertility treatment in Belgium is that Belgian clinics offer better quality of care. WHAT IS KNOWN ALREADY The internet is the most important source of information for cross-border patients. Many Dutch patients visit Belgian clinics for infertility treatment. STUDY DESIGN, SIZE, DURATION This study comprised an inductive thematic analysis of eight Dutch internet forums about infertility. PARTICIPANTS/MATERIALS, SETTING, METHODS All the threads that were active in a 15-month period (October 2010-December 2011) were retrieved and checked for relevance. This resulted in 77 threads containing 1813 posts that were used for thematic analysis. MAIN RESULTS AND THE ROLE OF CHANCE Eight themes emerged after data analysis: medical expertise and testing, feelings and experiences, costs, trying out different clinics, travel and waiting times, treatments in the Netherlands, cooperation between clinics/physicians and laws and regulations. Our analysis of shared patient experiences indicates that patients identify respect for the person behind the patient as the fundamental reason why quality of care is higher in Belgium. They define this respect as active involvement in the medical decision-making process, which is considered a form of patient-centred care. LIMITATIONS, REASONS FOR CAUTION The data from internet forums are not representative of the experience of Dutch IVF patients in Belgium. We are presenting a thematic analysis of information that circulates on the web, not making statements about IVF treatment in Belgium or the Netherlands. WIDER IMPLICATIONS OF THE FINDINGS This is the first study on what information (future) cross-border patients are likely to find when they look for information online. STUDY FUNDING/COMPETING INTEREST(S) W.V.H. has a Ph.D. grant and V.P. holds a Postdoctoral Mandate by the Flemish Foundation for Scientific Research (FWO-Vlaanderen). G.P. is supported by a full-time stipend at Ghent University. There are no competing interests. TRIAL REGISTRATION NUMBER N/A.

Lesbian couples' views about and experiences of not being able to choose their sperm donor

In this qualitative study, we explore how lesbian recipients view and experience the selection of their anonymous sperm donor. The study was conducted in Belgium, where fertility centres follow a legal protocol that severely restricts personal choice in donor selection. While previous studies have shown that recipients want greater control and input in the selection of their sperm donor, this was not a main concern for most women in the present study. They generally acknowledged their lack of control on the selection outcome and accepted this as part and parcel of an anonymous donation policy that provides an opportunity to have a child. They actively and passively downplayed initial concerns about the donor selection procedure and felt they did not have or need a right to further control over the donor selection. In adopting this ‘subordinate’ position, they felt they should trust the hospital, which they hoped would fulfil rather high screening standards. Those who did want more choice were nuanced and careful about their motivations: they focused on selecting traits that would facilitate normal child development or increase family coherence. The findings shed light on how these patients perceive their position in this third-party reproduction setting.

Parental (in)equality and the genetic link in lesbian families

Objective: In this qualitative study, we investigate how lesbian couples experience and deal with the difference in genetic relatedness in their family. Background: Previous research showed that lesbian couples handle the difference with regard to genetic relatedness by, for instance, creating a narrative about physical resemblances or by focusing on the social bond and its influence on children. Methods: The findings are based on qualitative in-depth interviews with 10 lesbian couples who had at least one donor-conceived child aged 7–10. Results: The difference with regard to the genetic link brought up complex and context-specific experiences for these parents. Generally, the genetic link was described as irrelevant: equality between both parents was presented as a given. However, some experiences of difference due to the presence of one genetic link were found. In these accounts, the genetic link was described as a valuable extra that created an inequality between them as parents. Conclusion: The findings show that these mothers have a complex attitude towards genetic relatedness.

Family Communication About the Donor Conception A Multi-Perspective Qualitative Study With Lesbian Parents and Their Children

In literature, disclosure of donor conception in lesbian families has been considered an obvious and straightforward event. However, little is known about the ways in which donor conception is discussed in planned lesbian co-mother families. This study focuses on the process of parent–child communication about the donor conception on a within-family level. Six families, including 7 children and 12 parents, were interviewed about their family communication with regard to donor conception. A dyadic interview analysis revealed that family members managed the space taken up by the topic of donor conception in their daily conversations. Within these conversations, they also took care of each other and of their family relationships. In addition, children had an active position in the co-construction of the donor conception narrative. Linking these findings to the concepts of relational management and functionality of donor conception narratives, this study informs practitioners in the field of medically assisted reproduction.

Standards of practice in empirical bioethics research: towards a consensus.

BackgroundThis paper reports the process and outcome of a consensus finding project, which began with a meeting at the Brocher Foundation in May 2015. The project sought to generate and reach consensus on standards of practice for Empirical Bioethics research. The project involved 16 academics from 5 different European Countries, with a range of disciplinary backgrounds.MethodsThe consensus process used a modified Delphi approach.ResultsConsensus was reached on 15 standards of practice, organised into 6 domains of research practice (Aims, Questions, Integration, Conduct of Empirical Work, Conduct of Normative Work; Training & Expertise).ConclusionsThrough articulating these standards we outline a position that encourages responses, and through those responses we will be able to identify points of agreement and contestation that will drive the conversation forward. In that vein, we would encourage researchers, funders and journals to engage with what we have proposed, and respond to us, so that our community of practice of empirical bioethics research can develop and evolve further.

Recipients' views on payment of sperm donors

The aim of this qualitative study was to explore how recipients viewed payment of sperm donors. The study was conducted in Belgium, where, as in many countries, sperm donors receive recompense for their time and expenses. Face-to-face semi-structured interviews were conducted with 34 heterosexual and lesbian couples who, at the time of data collection, had at least one donor-conceived child aged 7-10 years or who were undergoing donor conception treatment. Although participants commonly described the issue of financial compensation as something that did not really concern them, all supported the idea that some level of payment was acceptable or even necessary. The participants also identified several ways in which donor payment offered advantages to their own position as (future) parents. Although the idea is commonly rehearsed that sperm donation is a gift and that monetary transaction for conception is demeaning, the participants of this study did not generally share this view. To them, a small financial return served as a symbolic acknowledgement of the donors contribution and helped secure the type of relationship they expected from their donor. There was clearly concern, however, over high payments and the risk of attracting the wrong kind of donor.

Secondary use of empirical research data in medical ethics papers on gamete donation: forms of use and pitfalls

This paper aims to provide a description of how authors publishing in medical ethics journals have made use of empirical research data in papers on the topic of gamete or embryo donation by means of references to studies conducted by others (secondary use). Rather than making a direct contribution to the theoretical methodological literature about the role empirical research data could play or should play in ethics studies, the focus is on the particular uses of these data and the problems that can be encountered with this use. In the selection of papers examined, apart from being used to describe the context, empirical evidence was mainly used to recount problems that needed solving. Few of the authors looked critically at the quality of the studies they quoted, and several instances were found of empirical data being used poorly or inappropriately. This study provides some initial baseline evidence that shows empirical data, in the form of references to studies, are sometimes being used in inappropriate ways. This suggests that medical ethicists should be more concerned about the quality of the empirical data selected, the appropriateness of the choice for a particular type of data (from a particular type of study) and the correct integration of this evidence in sound argumentation. Given that empirical data can be misused also when merely cited instead of reported, it may be worthwhile to explore good practice requirements for this type of use of empirical data in medical ethics.

‘No daddy’, ‘A kind of daddy’: words used by donor conceived children and (aspiring) parents to refer to the sperm donor

Abstract Research has shown that the recipients of donor sperm can experience difficulties finding appropriate language to refer to the donor. Based on two qualitative analysis techniques, namely word count and empirical discourse analysis, we studied the words used to refer to the donor in heterosexual and lesbian (aspiring) parents and in donor conceived children. Findings show that the words used in these households are highly diverse and have at least four different interlinked functions: (1) to position the donor in relation to the nuclear family; (2) to safeguard the role of the social parent; (3) to clarify family structure; and (4) to present a positive picture of the donor. Both parents and children consciously reflect on what words to use to refer to the donor. Although parents try to keep words like ‘father’ and ‘daddy’ out of the family narrative, children use these words. These findings show that it is important for healthcare personnel and policy makers to reflect on the careful use of terminology when they address questions around sperm donation because the terminology invokes specific meanings that have an effect on how the recipients and their children perceive the role of the donor.

Multi family member interview studies: a focus on data analysis

Although qualitative research about couples and families is becoming increasingly widespread, the aspect of data analysis remains largely underrepresented in the literature. In this methodological paper, we outline one specific approach to data analysis in the context of multi family member interview studies. Inspired by Interpretative Phenomenological Analysis and Dyadic Interview Analysis, this approach allows for the detailed and systematic analysis of family practices and the co-construction of shared family realities. Based on an example study in the field of medically assisted reproduction, we give a detailed explanation of the aim of this approach, the different steps in the analysis process and the output of a multi family member interview study. The findings of this example study are discussed in light of the methodological challenges and opportunities. Practitioner points Multi family member interview analysis allows for the systematic analysis of family practices and the co-construction of shared family realities The findings might approximate to the therapeutic complexities that systemic therapists often encounter better than classical quantitative or qualitative research One specific data analysis approach in the context of multi family member interview studies is outlined as data analysis remains underrepresented in the literature