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Gamete and embryo donation for research: what might shape the willingness to donate among gamete donors and recipients?

  • Assisted Reproduction Technologies
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Abstract

Purpose

Research using gametes and embryos donated by reproductive and third-party donors contributed to substantial, albeit contentious achievements. The views of gamete donors and recipients on donation for research and the underpinning role of attitudes towards research have been seldom explored and are yet to be incorporated into ethical, legal, and regulatory landscapes. From a cultural standpoint, this study adapts and explores psychometric properties of the Portuguese version of the Research Attitudes Questionnaire (RAQ), and analyzes the willingness of gamete donors and recipients to donate gametes and embryos for research and its association with sociodemographic, reproductive characteristics, and attitudes towards research.

Methods

Between July 2017 and June 2018, 71 donors and 165 recipients completed a self-administered questionnaire at the Portuguese Public Bank of Gametes. Willingness to donate and attitudes towards research were measured with a 5-point Likert scale. RAQ psychometric characteristics were explored.

Results

Two RAQ components were identified: “trustworthiness of research” and “critical perspective”. Most participants were willing to donate gametes and embryos: donors more willing to donate gametes and male recipients more willing to donate gametes and embryos. Higher RAQ scores, indicating a more positive attitude towards research, were observed on the component “trustworthiness of research” among those willing to donate gametes and embryos and on the component “critical perspective” among those willing to donate embryos.

Conclusion

These findings help foster inclusivity, diversity, and responsiveness of research and call for upstream engagement of male and female gamete donors and recipients, promoting a trustworthy, anticipatory, democratic, and people-centered approach to policies, regulations, and practices in human gamete and embryo research.

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Data availability

Data are available from the corresponding author on reasonable request.

Code availability

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References

  1. Harper JC, Aittomäki K, Borry P, Cornel MC, de Wert G, Dondorp W, et al. Recent developments in genetics and medically assisted reproduction: from research to clinical applications. Eur J Hum Genet. 2018;26:12–33.

    Article  CAS  PubMed  Google Scholar 

  2. WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. Human genome editing: a framework for governance. Geneva: World Health Organization; 2021.

  3. Niemiec E, Howard HC. Include egg donors in CRISPR gene-editing debate. Nature. 2019;575:51.

    Article  CAS  PubMed  Google Scholar 

  4. Ma H, Marti-Gutierrez N, Park S-W, Wu J, Lee Y, Suzuki K, et al. Correction of a pathogenic gene mutation in human embryos. Nature. 2017;548:413–9.

    Article  CAS  PubMed  Google Scholar 

  5. Niemiec E, Howard HC. Germline genome editing research: what are gamete donors (not) informed about in consent forms? CRISPR J. 2020;3:52–63.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Cohen IG, Adashi EY, Gerke S, Palacios-González C, Ravitsky V. The regulation of mitochondrial replacement techniques around the world. Annu Rev Genomics Hum Genet. 2020;21:565–86.

    Article  CAS  PubMed  Google Scholar 

  7. Dryzek JS, Nicol D, Niemeyer S, Pemberton S, Curato N, Bächtiger A, et al. Global citizen deliberation on genome editing. Science. 2020;369:1435–7.

    Article  CAS  PubMed  Google Scholar 

  8. Scheufele DA, Krause NM, Freiling I, Brossard D. What we know about effective public engagement on CRISPR and beyond. Proc Natl Acad Sci USA. 2021;18: e2004835117.

    Article  CAS  Google Scholar 

  9. Vijlbrief B, Riedijk S, Houtman D, Hofstra R. Germline genome editing: public dialogue is urgent but not self-evident. Eur J Hum Genet. 2020;28:4–5.

    Article  PubMed  Google Scholar 

  10. Haimes E, Taylor K. Rendered invisible? The absent presence of egg providers in U.K. debates on the acceptability of research and therapy for mitochondrial disease. Monash Bioeth Rev. 2015;33:360–78.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Keglberg Hærvig K, Bonde JP, Ramlau-Hansen CH, Toft G, Hougaard KS, Specht IO, et al. Fetal Programming of Semen quality (FEPOS) cohort - a DNBC male-offspring cohort. Clin Epidemiol. 2020;12:757–70.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Ma H, O’Neil RC, Marti Gutierrez N, Hariharan M, Zhang ZZ, He Y, et al. Functional human oocytes generated by transfer of polar body genomes. Cell Stem Cell. 2017;20:112–9.

    Article  CAS  PubMed  Google Scholar 

  13. Hyslop LA, Blakeley P, Craven L, Richardson J, Fogarty NME, Fragouli E, et al. Towards clinical application of pronuclear transfer to prevent mitochondrial DNA disease. Nature. 2016;534:383–6.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  14. Ethics Committee of the American Society for Reproductive Medicine. Informed consent and the use of gametes and embryos for research: a committee opinion. Fertil Steril. 2014;101:332–5.

    Article  Google Scholar 

  15. Hill GA, Freeman MR. Embryo disposition: choices made by patients and donor oocyte recipients. Fertil Steril. 2011;95:940–3.

    Article  PubMed  Google Scholar 

  16. Zakarin Safier L, Gumer A, Kline M, Egli D, Sauer MV. Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes. J Assist Reprod Genet. 2018;35:1219–25.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  17. Huang C, Li B, Xu K, Liu D, Hu J, Yang Y, et al. Decline in semen quality among 30,636 young Chinese men from 2001 to 2015. Fertil Steril. 2017;107:83-8.e2.

    Article  PubMed  Google Scholar 

  18. Al Rashid K, Taylor A, Lumsden MA, Goulding N, Lawlor DA, Nelson SM. Association of the serum metabolomic profile by nuclear magnetic resonance spectroscopy with sperm parameters: a cross-sectional study of 325 men. Fertil Steril. 2020;1:142–60.

    Google Scholar 

  19. Haimes E. Juggling on a rollercoaster? Gains, loss and uncertainties in IVF patients’ accounts of volunteering for a U.K. ‘egg sharing for research’ scheme. Soc Sci Med. 2013;86:45–51.

    Article  PubMed  PubMed Central  Google Scholar 

  20. IFFS. IFFS Surveillance 2019. Global Reproductive Health. 2019;4:e29.

    Article  Google Scholar 

  21. Samorinha C, Pereira M, Machado H, Figueiredo B, Silva S. Factors associated with the donation and non-donation of embryos for research: a systematic review. Hum Reprod Update. 2014;20:641–55.

    Article  PubMed  Google Scholar 

  22. Westlander G, Janson PO, Tägnfors U, Bergh C. Attitudes of different groups of women in Sweden to oocyte donation and oocyte research. Acta Obstet Gynecol Scand. 1998;77:317–21.

    CAS  PubMed  Google Scholar 

  23. Purewal S, van den Akker O. Attitudes and intention to donate oocytes for research. Fertil Steril. 2010;93:1080–7.

    Article  PubMed  Google Scholar 

  24. Waldby C, Carroll K. Egg donation for stem cell research: ideas of surplus and deficit in Australian IVF patients’ and reproductive donors’ accounts. Sociol Health Illn. 2012;34:513–28.

    Article  PubMed  Google Scholar 

  25. Emond M, Scheib JE. Why not donate sperm? A study of potential donors. Evol Psychol. 1998;19:313–9.

    Google Scholar 

  26. Bruno C, Dudkiewicz-Sibony C, Berthaut I, Weil E, Brunet L, Fortier C, et al. Survey of 243 ART patients having made a final disposition decision about their surplus cryopreserved embryos: the crucial role of symbolic embryo representation. Hum Reprod. 2016;31:1508–14.

    Article  CAS  PubMed  Google Scholar 

  27. Sharma H, Johnstone EB, Gates E, Sohn SH, Huddleston HG, Fujimoto VY. Asian immigrants to the United States are less likely to donate cryopreserved embryos for research use. Fertil Steril. 2011;95:1672–6.

    Article  PubMed  Google Scholar 

  28. Luna M, Boada M, Aran B, Coroleu B, Barri PN, Veiga A. Couples’ opinions regarding the fate of surplus frozen embryos. Reprod Biomed Online. 2009;19:11–5.

    Article  PubMed  Google Scholar 

  29. Bangsbøll S, Pinborg A, Yding Andersen C, Nyboe AA. Patients’ attitudes towards donation of surplus cryopreserved embryos for treatment or research. Hum Reprod. 2004;19:2415–9.

    Article  PubMed  Google Scholar 

  30. Baía I, de Freitas C, Samorinha C, Provoost V, Silva S. Dual consent? Donors' and recipients' views about involvement in decision-making on the use of embryos created by gamete donation in research. BMC Med Ethics. 2019;20:90–6.

  31. Pinto da Silva S, de Freitas C, Baía I, Samorinha C, Machado H, Silva S. Doação de gametas: questões sociais e éticas (não) respondidas em Portugal. Cad Saúde Pública. 2019;35:e00122918.

  32. Fiske A, Prainsack B, Buyx A. Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine. J Med Ethics. 2019;45:617–22.

    Article  PubMed  Google Scholar 

  33. Sheehan M, Friesen P, Balmer A, Cheeks C, Davidson S, Devereux J et al. Trust, trustworthiness and sharing patient data for research. J Med Ethics. 2020:medethics-2019–106048.

  34. Milne R, Morley KI, Almarri MA, Anwer S, Atutornu J, Baranova EE, et al. Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries. Genome Med. 2021;13:92.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Kraft SA, Cho MK, Gillespie K, Halley M, Varsava N, Ormond KE, et al. Beyond consent: building trusting relationships with diverse populations in precision medicine research. Am J Bioeth. 2018;18:3–20.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Achterberg P, de Koster W, van der Waal J. A science confidence gap: education, trust in scientific methods, and trust in scientific institutions in the United States, 2014. Public Underst Sci. 2017;26:704–20.

    Article  PubMed  Google Scholar 

  37. Samorinha C, Severo M, Alves E, Machado H, Figueiredo B, Silva S. Factors associated with willingness to donate embryos for research among couples undergoing IVF. Reprod Biomed Online. 2016;32:247–56.

    Article  PubMed  Google Scholar 

  38. Gornick MC, Ryan KA, Kim SY. Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey. J Empir Res Hum Res Ethics. 2014;9:22–33.

    Article  PubMed  PubMed Central  Google Scholar 

  39. De Vries RG, Tomlinson T, Kim HM, Krenz CD, Ryan KA, Lehpamer N, et al. The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate. Life Sci Soc Policy. 2016;12:3.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Merdad L, Aldakhil L, Gadi R, Assidi M, Saddick SY, Abuzenadah A, et al. Assessment of knowledge about biobanking among healthcare students and their willingness to donate biospecimens. BMC Med Ethics. 2017;18:32.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Rubright JD, Cary MS, Karlawish JH, Kim SY. Measuring how people view biomedical research: reliability and validity analysis of the research attitudes questionnaire. J Empir Res Hum Res Ethics. 2011;6:63–8.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Muroff JR, Hoerauf SL, Kim SY. Is psychiatric research stigmatized? An experimental survey of the public. Schizophr Bull. 2006;32:129–36.

    Article  PubMed  Google Scholar 

  43. Field A. Discovering Statistics using SPSS. 4th ed. London: Sage Publications; 2013.

    Google Scholar 

  44. Boateng GO, Neilands TB, Frongillo EA, Melgar-Quiñonez HR, Young SL. Best practices for developing and validating scales for health, social, and behavioral research: a primer. Front Public Health. 2018;6:149.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika. 1951;16:297–334.

    Article  Google Scholar 

  46. Kline P. Handbook of Psychological Testing. 2nd ed. London: Routledge; 2000.

    Google Scholar 

  47. Revelle W, Zinbarg RE. Coefficients alpha, beta, omega and the glb: comments on Sijtsma. Psychometrika. 2009;74:145–154.

  48. Revelle W. Psych: procedures for psychological, psychometric, and personality research. Evanston: Northwestern University; 2020.

  49. Nuffield Council on Bioethics. Human bodies: donation for medicine and research. London: Nuffield Council of Bioethics; 2011.

    Google Scholar 

  50. Roberts C, Throsby K. Paid to share: IVF patients, eggs and stem cell research. Soc Sci Med. 2008;66:159–69.

    Article  PubMed  Google Scholar 

  51. Bahadur G, Morrison M, Machin L. Beyond the ‘embryo question’: human embryonic stem cell ethics in the context of biomaterial donation in the UK. Reprod Biomed Online. 2010;21:868–74.

    Article  CAS  PubMed  Google Scholar 

  52. Pinto da Silva S, De Freitas C, Silva S. Medical ethics when moving towards non-anonymous gamete donation: the views of donors and recipients. J Med Ethics. 2021;medethics-2020–106947.

  53. Pennings G, de Mouzon J, Shenfield F, Ferraretti AP, Mardesic T, Ruiz A, et al. Socio-demographic and fertility-related characteristics and motivations of oocyte donors in eleven European countries. Hum Reprod. 2014;29:1076–89.

    Article  CAS  PubMed  Google Scholar 

  54. Carrera JS, Brown P, Brody JG, Morello-Frosch R. Research altruism as motivation for participation in community-centered environmental health research. Soc Sci Med. 2018;196:175–81.

    Article  PubMed  Google Scholar 

  55. Critchley C, Wiersma M, Lipworth W, Light E, Dive L, Kerridge I. Examining diversity in public willingness to participate in offshore human biobanking: an Australian mixed methods study. Public Underst Sci. 2020;29:757–69.

    Article  PubMed  Google Scholar 

  56. Amato P, Daar J, Francis L, Klipstein S, Ball D, Rinaudo P, et al. Ethics in embryo research: a position statement by the ASRM Ethics in Embryo Research Task Force of the ASRM Ethics Committee. Fertil Steril. 2020;113:270–94.

    Article  Google Scholar 

  57. Buyx A, Del Savio L, Prainsack B, Völzke H. Every participant is a PI. Citizen science and participatory governance in population studies. Int J Epidemiol. 2017;46:377–84.

    PubMed  Google Scholar 

  58. Nordberg A, Minssen T, Feeney O, de Miguel BI, Galvagni L, Wartiovaara K. Regulating germline editing in assisted reproductive technology: an EU cross-disciplinary perspective. Bioethics. 2020;34:16–32.

    Article  PubMed  Google Scholar 

  59. Cary MS, Rubright JD, Grill JD, Karlawish J. Why are spousal caregivers more prevalent than nonspousal caregivers as study partners in AD dementia clinical trials? Alzheimer Dis Assoc Disord. 2015;29:70–4.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Miller JD. Public understanding of, and attitudes toward, scientific research: what we know and what we need to know. Public Underst Sci. 2004;13:273–94.

    Article  Google Scholar 

  61. Johnstone E, Sandler JR, Addauan-Andersen C, Sohn SH, Fujimoto VY. Asian women are less likely to express interest in infertility research. Fertil Steril. 2010;94:1249–53.

    Article  PubMed  Google Scholar 

  62. McQueen DB, Warren CM, Xiao AH, Shulman LP, Jain T. Disparities among infertility patients regarding genetic carrier screening, sex selection, and gene editing. J Assist Reprod Genet. 2021;38:2319-2325.

  63. Cunningham-Erves J, Villalta-Gil V, Wallston KA, Boyer AP, Wilkins CH. Racial differences in two measures of trust in biomedical research. J Clin Transl Sci. 2019;3:113–9.

    Article  PubMed  PubMed Central  Google Scholar 

  64. Salazar CR, Hoang D, Gillen DL, Grill JD. Racial and ethnic differences in older adults’ willingness to be contacted about Alzheimer’s disease research participation. Alzheimers’ Dement. 2020;6:e12023.

    Google Scholar 

  65. Voigt TH, Holtz V, Niemiec E, Howard HC, Middleton A, Prainsack B. Willingness to donate genomic and other medical data: results from Germany. Eur J Hum Genet. 2020;28:1000–9.

    Article  PubMed  PubMed Central  Google Scholar 

  66. Kickbusch I, Gleicher D. Governance for health in the 21st century. Copenhagen: WHO Regional Office for Europe; 2012.

    Google Scholar 

  67. World Health Organization (WHO). WHO. a European policy framework and strategy for the 21st century. Geneva: WHO; 2020. p. 2013.

    Google Scholar 

  68. Gillon R. Raising the profile of fairness and justice in medical practice and policy. J Med Ethics. 2020;46:789–90.

    Article  PubMed  Google Scholar 

  69. Fritz Z, Cox CL. Integrating philosophy, policy and practice to create a just and fair health service. J Med Ethics. 2020;46:797–802.

    Article  PubMed  Google Scholar 

  70. Erikainen S, Friesen P, Rand L, Jongsma K, Dunn M, Sorbie A, et al. Public involvement in the governance of population-level biomedical research: unresolved questions and future directions. J Med Ethics. 2021;47:522–5.

    Article  Google Scholar 

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Acknowledgements

The authors are grateful to all participants and professionals of the Public Bank of Gametes who collaborated in this study, to the research team of the ENGAgED project for their collaboration in data collection, and to all the reviewers for their insightful and constructive comments and suggestions.

Funding

This study was supported by national funding from the FCT — Foundation for Science and Technology (Portuguese Ministry of Science, Technology, and Higher Education), the Operational Programmes Competitiveness and Internationalization (COMPETE 2020) and Human Capital (POPH), Portugal 2020, and the European Union, through the European Regional Development Fund and the European Social Fund, under the project ENGAgED — Bionetworking and citizenship in gamete donation (POCI-01–0145-FEDER-016762; Ref. FCT PTDC/IVC-ESCT/6294/2014), the Unidade de Investigação em Epidemiologia — Instituto de Saúde Pública da Universidade do Porto (EPIUnit) (POCI-01–0145-FEDER-006862; Ref. FCT UIDB/04750/2020), the PhD grant SFRH/BD/122603/2016 (Pinto da Silva S), the contract Ref. DL57/2016/CP1336/CT0001 (de Freitas C), and the FCT investigator contract IF/01674/2015 (Silva S).

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Authors and Affiliations

  1. EPIUnit - Instituto de Saúde Pública, Universidade do Porto, Rua das Taipas nº135, 4050‑600, Porto, Portugal

    Sandra Pinto da Silva, Cláudia de Freitas & Milton Severo

  2. Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Universidade do Porto, Rua das Taipas nº135, 4050-600, Porto, Portugal

    Sandra Pinto da Silva, Cláudia de Freitas & Milton Severo

  3. Departamento de Ciências da Saúde Pública e Forenses e Educação Médica, Faculdade de Medicina, Universidade do Porto, Alameda Prof. Hernâni Monteiro, 4200-319, Porto, Portugal

    Sandra Pinto da Silva & Cláudia de Freitas

  4. Centre for Research and Studies in Sociology (CIES-IUL), University Institute of Lisbon (ISCTE-IUL), Avenida das Forças Armadas, 1649-026, Lisboa, Portugal

    Cláudia de Freitas

  5. Instituto de Ciências Biomédicas Abel Salazar (ICBAS), Universidade do Porto, Rua Jorge de Viterbo Ferreira nº 228, 4050-313, Porto, Portugal

    Milton Severo

  6. Department of Sociology, Institute of Social Sciences, University of Minho, Campus de Gualtar, 4710-​057, Braga, Portugal

    Susana Silva

  7. Centre for Research in Anthropology (CRIA), Avenida das Forças Armadas, 1649-026, Lisboa, Portugal

    Susana Silva

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  1. Sandra Pinto da Silva
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  2. Cláudia de Freitas
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  4. Susana Silva
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Contributions

SS and SPS designed the study. SPS collaborated in data collection. SPS and MS analyzed data. SPS drafted the manuscript. CdF, MS, and SS critically reviewed the manuscript and approved its final version.

Corresponding author

Correspondence to Sandra Pinto da Silva.

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Ethics approval

Ethical approval was obtained from the Ethics Committee for Health of the Centro Hospitalar Universitário do Porto and the Portuguese Data Protection Authority. This study was conducted in accordance with the ethical standards mentioned in the 1964 Declaration of Helsinki and its later amendments.

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Informed consent was obtained from all participants included in this study.

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Pinto da Silva, S., de Freitas, C., Severo, M. et al. Gamete and embryo donation for research: what might shape the willingness to donate among gamete donors and recipients?. J Assist Reprod Genet 39, 2077–2087 (2022). https://doi.org/10.1007/s10815-022-02569-y

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