Genetic and health issues emerging from sperm donation—The experiences and views of donors

Ken Daniels, Wendy Kramer

Donor Sibling Registry, Nederland, USA.
School of Social and Political Sciences, University of Canterbury, Christchurch, New Zealand.

DOI: 10.4236/arsci.2013.13003                

Abstract

164 previous sperm donors completed an online survey regarding health and genetic experiences and views. Results highlight that donors desire to act responsibly with recruiting facilities is not always possible. Objective: Obtaining the views and experiences of sperm donors regarding health and genetic matters. Design: Online survey. Setting: Not applicable. Participants: 164 previous sperm donors. Interventions: Not applicable. Main outcome measures: Views and experiences on health and genetic issues. Results: A variety of approaches are adopted by recruiting facilities in regard to selection and post-donation factors. The vast majority of donors said they had not been contacted by the facility they donated at to update their medical information, while almost one quarter of donors indicated that a health or genetic risk factor had occurred. A great majority of donors felt that they had not received any education or counselling on the potential curiosities of donor conceived people. Donors sought to be honest and open with staff but often found there were difficulties in doing so. Conclusions: Overall, donors indicate that they see donating as involving responsibilities to the offspring and families. The study highlights however that their ability to act responsibly is limited by some of the interactions or lack of them with the facilities where they donated. Implications for recruiting facilities need to be considered.

Keywords

Sperm Donors; Health and Genetic; Recruitment; Policies

Conflicts of Interest

The authors declare no conflicts of interest.

References

[1]	American Medical Association (2013). http://www.amaassn.org/ama/pub/physician-resources/medical-science/genetics-molecular-medicine/family-history.page
[2]	The American Society of Human Genetics (2013). http://www.ashg.org/education/family_history.shtml
[3]	Singer, D. and Hunter, M. (2003) Assisted human reproduction psychological and ethical dilemmas. Whurr, London.
[4]	Blyth, E. and Landau, R. (2004) Third party assisted conception across cultures. Jessica Kingsley, London, 2004.
[5]	Donor Conception Network (2012). http://www.dcnetwork.org/
[6]	American Society for Reproductive Medicine (2004) Ethics committee report. Informing offspring of their conception by gamete donation. Fertility and Sterility, 81, 527-531. http://dx.doi.org/10.1016/j.fertnstert.2003.11.011
[7]	Callum, P., Messiaen, L., Bower, P., Skovby, F., Iger, J., Timshel, S., Sims, C. and Falk, R. (2012) Gonosmal mosaicism for an NFI deletion in a sperm donor: Evidence of the need for coordinated, long-term communication of health information among relevant parties. Human Reproduction, 27, 1223-1226. http://dx.doi.org/10.1093/humrep/des014
[8]	Ahmad, A. (2012) Danish sperm donation law tightened after donor passes on rare genetic disease. BioNews.
[9]	Sheldon, T. (2002) Children at risk after sperm donor develops late onset genetic disease. British Medical Journal, 324, 631. http://dx.doi.org/10.1136/bmj.324.7338.631
[10]	Donor Sibling Registry (2013). https://www.donorregistry.com/resource-library/medical-issues. Accessed 22 march 2013
[11]	Van den Broeck, U., Vander-meeren, M., Vanderschueren, D., Enzlin, P., Demyttenaere, K. and D’Hooghe, T. (2013) A Systematic review of sperm donors: Demographic characteristics, attitudes, motives and experiences of the process of sperm donation. Human Reproduction, 19, 37-51. http://dx.doi.org/10.1093/humupd/dms039
[12]	Kramer, W., Schneider, J. and Schultz, N. (2009) US oocyte donors: A retrospective study of medical and psychological issues. Human Reproduction, 24, 3144-3149. http://dx.doi.org/10.1093/humrep/dep309
[13]	Lindheim, R., Porat, N. and Jaeger, A. (2011) Survey report of gamete donors’ and recipients’ preferences regarding disclosure of third party reproduction outcomes and genetic risk information. Journal of Obstetrics and Gynaecology Research, 4, 292-299. http://dx.doi.org/10.1111/j.1447-0756.2010.01333.x
[14]	Daniels, K., Kramer, W. and Perezy-Perez, M. (2012) Semen donors who are open to contact with their offspring: Issues and implications for them and their families. Reproductive Medicine, 25, 670-677. http://dx.doi.org/10.1016/j.rbmo.2012.09.009
[15]	The Practice Committee of the American Society for Reproductive Medicine and the Practice Committee of the Society for Assisted Reproductive Technology (2013) Recommendations for gamete and embryo donation. A Committee Opinion, 99, 47-63.
[16]	Jadva, V., Freeman, T., Kramer, W. and Golombok, S. (2009) The experiences of adolescents and adults conceived by sperm donation: Comparisons by age of disclosure and family type. Human Reproduction, 24, 1909- 1919. http://dx.doi.org/10.1093/humrep/dep110
[17]	Jadva, V., Freeman, T., Kramer,, W. and Golombok, S. (2010) Experiences of offspring searching for and contacting their donor siblings and donor. Reproductive Medicine, 20, 523-532. http://dx.doi.org/10.1016/j.rbmo.2010.01.001
[18]	Beeson, D., Jennings, P. and Kramer, W. (2011) Offspring searching for their sperm donors: How family type shapes the process. Human Reproduction, 26, 2415-2424. http://dx.doi.org/10.1093/humrep/der202
[19]	Freeman, T., Jadva, V., Kramer, W. and Golombok, S. (2009) Gamete donation: parents’ experiences of searching for their child’s donor siblings and donor. Human Reproduction, 1, 1-12.
[20]	Frith, L., Sawyer, N. and Kramer, W. (2012) Forming a family with sperm donation: A survey of 244 non-biological parents. Reproductive Medicine, 24, 709-718. http://dx.doi.org/10.1016/j.rbmo.2012.01.013
[21]	Stephenson, J., Blyth, E., Kramer, W. and Schneider, J. (2012) Donor type and parental disclosure following oocyte donation. Asia Pacific Journal of Reproduction, 1, 39-45.
[22]	Jadva, V., Freeman, T., Kramer, W. and Golombok, S. (2011) Sperm and oocyte donors’ experiences of anonymous donation and subsequent contact with their donor offspring. Human Reproduction, 26, 638-645. http://dx.doi.org/10.1093/humrep/deq364
[23]	Ethics Committee of the American Society for Reproductive Medicine (2009) Interests, obligations and rights of the donor in gamete donation. Fertility and Sterility, 91, 1-6. http://dx.doi.org/10.1016/S0015-0282(09)00590-1
[24]	Sini, S., Ibarreta, D., Anastasiadou, V., Ayme, S., Braga, S., Cornel, M., et al. (2006) The interface between medically assisted reproduction and genetics; technical, social, ethical and legal issues. Human Reproduction, 1-51.