Attitudes of sperm, egg and embryo donors and recipients towards genetic information and screening of donors

Amor, David J.; Kerr, Annabelle; Somanathan, N; McEwen, Alison; Tome, Marianne; Hodgson, Jan; Lewis, Sharon

doi:10.1186/s12978-018-0468-9

Cited by 16 publications

(9 citation statements)

References 21 publications

(21 reference statements)

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“…Our values are higher than previous studies that only considered the findings of carrier screening. These results support the need for specialized pre-test and post-test counseling to deal with these findings and the psychological burden to the candidates ( Amor et al ., 2018 ).…”

Section: Discussionsupporting

confidence: 76%

Genetic counseling and carrier screening in candidates for gamete donation at a Portuguese center

Soares¹,

Tkachenko²,

Fernandes³

et al. 2022

JBRA

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Objective: Genetic counseling and carrier screening are part of the gamete donation process by healthy individuals. We aim to review the findings of genetic counseling and carrier screening of a cohort of candidates at our public gametes bank.Methods: Thirty-four male and 64 female candidates had genetic counseling with a medical geneticist before donation. Of these, one female candidate voluntarily dropped-out. Thirty-four males and 63 females performed karyotype and screening for the more common pathogenic variants for CFTR-related cystic fibrosis and spinal muscular atrophy (SMN1) in the Portuguese population. In addition, all females also performed Fragile X expansion screening (FMR1). Thirty candidates with known or assumed African ancestry performed hemoglobinopathies screening.Results: Six candidates were definitely or temporarily withheld from the donation process given their family or personal history that required further investigation. Of 97 candidates tested, 16.5% presented anomalous laboratory results (16/97): ten candidates were carriers for an autosomal recessive disorder -cystic fibrosis (5/97), sickle cell anemia (3/30), and spinal muscular atrophy (2/97). One female was an FMR1 pre-mutation carrier (1/63). One female candidate presented with triple X mosaicism: 47,XXX[2]/46,XX [50]. Two candidates presented with chromosomal instability of unknown origin. In one candidate, a mosaic for the Philadelphia chromosome was detected, revealing the diagnosis of chronic myeloid leukemia.Conclusions: From a cohort of 97 candidates, 21.7% had a family/personal history or an anomalous laboratory result that required additional genetic counseling, stressing the importance of performing pre-donation genetic counseling in this population.

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Section: Discussionsupporting

confidence: 76%

Genetic counseling and carrier screening in candidates for gamete donation at a Portuguese center

Soares¹,

Tkachenko²,

Fernandes³

et al. 2022

JBRA

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“…karyotyping or carrier status) ( Dondorp et al , 2014 ; European Directorate for the Quality of Medicines & HealthCare (EDQM), 2019 ). Amor et al (2018) showed that donors (as well as recipients) are hesitant about the process of genetic screening and there are concerns about how this information may be used, and the ethics of selectivity.…”

Section: Recommendations For Information Provision and Support For Do...mentioning

confidence: 99%

Good practice recommendations for information provision for those involved in reproductive donation†

Kirkman-Brown

Calhaz‐Jorge

Dancet

et al. 2022

Human Reproduction Open

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STUDY QUESTION What information and support should be offered to donors, intended parents and donor-conceived people, in general and in consideration of the availability of direct-to-consumer genetic testing and matching services? SUMMARY ANSWER For donors, intended parents and donor-conceived offspring, recommendations are made that cover information needs and informed consent, psychosocial implications and disclosure. WHAT IS KNOWN ALREADY Trends indicate that the use of donor-assisted conception is growing and guidance is needed to help these recipients/intended parents, the donors and offspring, navigate the rapidly changing environment in which donor-assisted conception takes place. STUDY DESIGN, SIZE, DURATION A working group (WG) collaborated on writing recommendations based, where available, on evidence collected from a literature search and expert opinion. Draft recommendations were published for stakeholder review and adapted where relevant based on the comments received. PARTICIPANTS/MATERIALS, SETTING, METHODS Papers retrieved from PUBMED were included from 1 January 2014 up to 31 August 2020, focusing on studies published since direct-to-consumer genetic testing has become more widespread and accessible. The current paper is limited to reproductive donation performed in medically assisted reproduction (MAR) centres (and gamete banks): donation outside the medical context was not considered. MAIN RESULTS AND THE ROLE OF CHANCE In total, 32 recommendations were made for information provision and support to donors, 32 for intended parents and 27 for donor-conceived offspring requesting information/support. LIMITATIONS, REASONS FOR CAUTION The available evidence in the area of reproductive donation is limited and diverse with regards to the context and types of donation. General conclusions and recommendations are largely based on expert opinion and may need to be adapted in light of future research. WIDER IMPLICATIONS OF THE FINDINGS These recommendations provide guidance to MAR centres and gamete banks on good practice in information provision and support but should also be considered by regulatory bodies and policymakers at a national and international level to guide regulatory and legislative efforts towards the protection of donors and donor-conceived offspring. STUDY FUNDING/COMPETING INTEREST(S) The development of this good practice paper was funded by European Society of Human Reproduction and Embryology (ESHRE), covering expenses associated with the WG meetings, the literature searches and dissemination. The WG members did not receive any payment. The authors have no conflicts of interest to declare. DISCLAIMER This document represents the views of ESHRE, which are the result of consensus between the relev...

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“…At present, sperm banks and clinics use very different panels, some containing hundreds of diseases including diseases whose detection may have a direct impact on the donors' future health and/ or reproduction (Pennings, 2020). The attitude of the donors in this study differs considerably from that of Australian donors who were much more concerned about increased genetic testing and who, if tested, did not want to know the results (Amor et al, 2018). Only around 20% in the current study seemed to want some degree of control over the information flow of the results of the testing.…”

Section: Discussionmentioning

confidence: 90%

“…There is a lack of empirical studies on the experiences of and attitudes of donors towards expanded carrier screening (Amor et al, 2018). Oocyte donors in a Spanish clinic were surprised by the information on testing and the possibility of being carriers (Abuli et al, 2016).…”

Section: Discussionmentioning

confidence: 99%

Attitudes of sperm donors towards offspring, identity release and extended genetic screening

Pennings

Mocanu

Herrmann

et al. 2021

Reproductive BioMedicine Online

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Attitudes of sperm, egg and embryo donors and recipients towards genetic information and screening of donors

Cited by 16 publications

References 21 publications

Genetic counseling and carrier screening in candidates for gamete donation at a Portuguese center

Genetic counseling and carrier screening in candidates for gamete donation at a Portuguese center

Good practice recommendations for information provision for those involved in reproductive donation†

Attitudes of sperm donors towards offspring, identity release and extended genetic screening

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