Marjolaine Doumergue

Giving or giving back: New psychosocial insights from sperm donors in France

Despite the growing importance of the international scientific literature concerning donor insemination, studies of French samples are rare. We recently had the opportunity to conduct a nationwide study on psychosocial issues related to semen donation in France. In this article, we present the main results of an analysis of the narratives of 33 sperm donors. We examine the meaning they attribute to this experience, their motivations, the social ramifications of their action, and their perspective on the principles of sperm donation in France. We highlight our results by comparing them to those derived from other recent international studies in different legislative contexts. Finally, we suggest a hypothesis regarding donor motivations based on recent literature in social sciences regarding the fundamental role of gift and reciprocity. These issues, particularly the anonymity of gamete donation, are currently at the heart of a national debate related to the expected revision of the French bioethics law.

Patterns of patient and healthcare provider viewpoints regarding participation in HIV cure-related clinical trials. Findings from a multicentre French survey using Q methodology (ANRS-APSEC)

Context Despite huge advances in the fight against HIV concerning diagnosis, clinical efficacy of antiretroviral treatments (ART), patient survival and quality of life, there is still no cure. Recent developments in HIV cure research have opened the way for clinical trials which could lead to a temporary or definitive end to ART. However, ethical questions exist about related trial-participation risks. The main goal of the ANRS-APSEC survey was, using Q-methodology, to investigate the viewpoints of people living with HIV (PLWH) and HIV healthcare providers (HHP) regarding motivations for and barriers to participation in HIV Cure-related clinical trials (HCRCT). Materials and methods Thirty-three statements were defined encompassing seven dimensions: treatment and follow-up; risks; benefits; patient-physician relationship; beliefs and attitudes; information; target population. Forty-one PLWH and 41 HHP from five French HIV services were asked to rank-order the statements. Results Five main viewpoints were elicited from “the most motivated” to “the most reluctant” vis-à-vis HCRCT participation. All placed importance on the wish to participate in HIV research. This result is in line with the HIV-specific culture of joint mobilization. For some viewpoints, the motivation to participate in/propose HCRCT was primarily conditioned by side-effects and/or by constraints, which overall were more accepted by PLWH than HHP. Some viewpoints placed particular importance on HCRCT recruitment strategies. Finally, some expressed a high acceptance of risks and constraints but emphasized the need for information. Conclusion HIV cure research clinical trials (HCRCT) constitute a risky yet unavoidable step towards the goal of finding a cure. To improve future HCRCT and informed consent designs, based on PLWH and HHP preferences and expectations, we need greater knowledge about how these populations perceive the risks and the benefits of HCRCT. Our results confirmed the importance of careful, studied HCRCT design, management and communication, to ensure PLWH and HHP acceptability and convergence of their expectations.

Will CURE trials introduce an uncomfortable revolution in the field of HIV research

Will CURE trials introduce an uncomfortable revolution in the field of HIV research? Christel Protière , Marie Préau, Marjolaine Doumergue, Marion Mora, Olivier Lambotte, Bruno Spire & Marie Suzan-Monti To cite this article: Christel Protière , Marie Préau, Marjolaine Doumergue, Marion Mora, Olivier Lambotte, Bruno Spire & Marie Suzan-Monti (2017): Will CURE trials introduce an uncomfortable revolution in the field of HIV research?, HIV Clinical Trials, DOI: 10.1080/15284336.2017.1331603 To link to this article: http://dx.doi.org/10.1080/15284336.2017.1331603

Sperm donor regulation and disclosure intentions: Results from a nationwide multi-centre study in France

Gamete donation in Europe is not regulated by a common legal framework. Different laws regarding donor anonymity and remuneration exist in different countries. In France, gamete donation is characterized by a stable legal framework – the existing system of anonymous and non-remunerated donation remained unchanged following a period of public and parliamentary debate in 2011 – but little evidence is available concerning recipients’ views and experiences of gamete donation. This article describes findings from a questionnaire completed individually by 714 heterosexual couple members undergoing a donor conception procedure at one of 20 national fertility centres in France. Participants were invited to report their attitudes towards the French legal framework, their perceptions of the anonymous donor, and their intentions to disclose donor conception to their child and to other people. The majority of respondents (93%) approved of the current legal framework. Participants indicated that they thought about the sperm donor in ways that emphasized his act of donation without describing him as a specific individual. A majority (71%) also stated that they intended to tell their child about their donor conception. Given that this is the largest nationwide study of French recipients of donor sperm, the findings make an important contribution to the research evidence currently available about prospective parents’ perspectives in the increasingly uncommon context of donor anonymity in Europe.

Acceptability of HIV cure-related trials: the challenges for physicians and people living with HIV (ANRS-APSEC)

ABSTRACT Essential HIV cure-related clinical trials (HCRCT) have a potentially high-risk profile in terms of participants’ health, which could hinder enrollment by people living with HIV (PLWH) and healthcare professionals (HP). The ANRS-APSEC survey is part of the IAS “Towards an HIV cure” initiative, which promotes multidisciplinary research for a safe, affordable and scalable cure. The study objectives were to understand the psychosocial mechanisms underlying PLWH and HP viewpoints about future HCRCT. Six focus group discussions (three with PLWH (n = 21) and three with HP (n = 30)) were held in three French infectious disease units. From these, three perspectives on HCRCT were identified. The first involved beliefs and knowledge associating HCRCT with poorer health and quality of life for PLWH. The second concerned perceptions of HCRCT as a biological and epidemiological flashback to a situation when HIV infection was left uncontrolled. The third was characterized by aspects of historical HIV culture that embrace innovation.

Le donneur dans les récits de conception : pratiques narratives de parenté par recours au don de spermatozoïdes

Little is known about the parents of donor-conceived offspring in France, where the anonymity of the donor prevails. The present study associates quantitative data informing the attitudes and decisions of parents towards disclosure and qualitative data related to their experience of being parents of a donor-conceived offspring. The quantitative results about the becoming of the conception narratives (n=929 requesting people, including 216 parents) confirmed that most parents decided to tell their child about the donor conception. The analysis of the semi-structured interviews of 37 parents defined the existence of a paradox between the conception stories mentioning the donor, who is objectified as a seed, and the representational project parents mostly pursue, which is anchored in a normalisation process.

Le donneur dans les récits de conception : pratiques narratives de parents ayant recours au don de sperme

Little is known about the parents of donor-conceived offspring in France, where the anonymity of the donor prevails. The present study associates quantitative data informing the attitudes and decisions of parents towards disclosure and qualitative data related to their experience of being parents of a donor-conceived offspring. The quantitative results about the becoming of the conception narratives (n=929 requesting people, including 216 parents) confirmed that most parents decided to tell their child about the donor conception. The analysis of the semi-structured interviews of 37 parents defined the existence of a paradox between the conception stories mentioning the donor, who is objectified as a seed, and the representational project parents mostly pursue, which is anchored in a normalisation process.