Diagnosing a genetic disease in a donor-conceived child: case report and discussion of the ethical, legal, and practical issues

Phillips KA, Deverka PA, Hooker GW, Douglas MP (2018) Genetic test availability and spending: where are we now? Where are we going? Health Aff (Millwood) 37:710–716

Article  PubMed  Google Scholar 

Kushnir VA, Smith GD, Adashi EY (2022) The Future of IVF: the new normal in human reproduction. Reprod Sci 29:849–856

Article  PubMed  Google Scholar 

Bockenhauer D, Bichet DG (2017) Nephrogenic diabetes insipidus. Curr Opin Pediatr 29:199–205

Article  PubMed  Google Scholar 

Gebhardt DOE (2002) Sperm donor suffers years later from inherited disease * commentary. J Med Ethics 28:213–214

Article  PubMed  PubMed Central  Google Scholar 

Sheldon T (2002) Children at risk after sperm donor develops late onset genetic disease. BMJ 324:631

Article  PubMed  PubMed Central  Google Scholar 

Hansen A (2012) Danish sperm donor passed neurofibromatosis on to five children. BMJ 345:e6570

Article  PubMed  Google Scholar 

Salama M, Isachenko V, Isachenko E et al (2018) Cross border reproductive care (CBRC): a growing global phenomenon with multidimensional implications (a systematic and critical review). J Assist Reprod Genet 35:1277–1288

Article  PubMed  PubMed Central  Google Scholar 

Knoers NVAM, van den Ouweland AMW, Verdijk M et al (1994) Inheritance of mutations in the V2 receptor gene in thirteen families with nephrogenic diabetes insipidus. Kidney Int 46:170–176

Article  PubMed  Google Scholar 

Bode HH, Crawford JD (1969) Nephrogenic diabetes insipidus in North America — the Hopewell hypothesis. N Engl J Med 280:750–754

Article  PubMed  Google Scholar 

Caletti MG, Balestracci A, Di Pinto D (2014) Pre- and post-treatment urinary tract findings in children with nephrogenic diabetes insipidus. Pediatr Nephrol 29:487–490

Article  PubMed  Google Scholar 

Health Canada (2020) Risk classification guide for the safety of sperm and ova observations. 1–19

Practice Committee of the American Society for Reproductive Medicine and the Practice Committee for the Society for Assisted Reproductive Technology (2021) Guidance regarding gamete and embryo donation. Fertil Steril 115:1395–1410

Article  Google Scholar 

A College of Obstetricians and Gynecologists’ Committee on Genetics (2017) Committee opinion no. 690: carrier screening in the age of genomic medicine. Obstet Gynecol 129:e35–e40

Article  Google Scholar 

Westemeyer M, Saucier J, Wallace J et al (2020) Clinical experience with carrier screening in a general population: support for a comprehensive pan-ethnic approach. Genet Med 22:1320–1328

Article  PubMed  PubMed Central  Google Scholar 

Health Canada (2019) Guidance document: safety of sperm and ova regulations. 1–115

Allan S (2012) Donor conception, secrecy and the search for information. J Law Med 19:631–650

PubMed  Google Scholar 

The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure (1998) Professional disclosure of familial genetic information. Am J Hum Genet 62:474–483

Article  Google Scholar 

Kalenga K, Persu A, Goffin E et al (2002) Intrafamilial phenotype variability in nephrogenic diabetes insipidus. Am J Kidney Dis 39:737–743

Article  PubMed  Google Scholar 

Carroll P, Al-Mojalli H, Al-Abbad A et al (2006) Novel mutations underlying nephrogenic diabetes insipidus in Arab families. Genet Med 8:443–447

Article  PubMed  Google Scholar 

Madeira JL, Crockin SL (2018) Legal principles and seminal legal cases in oocyte donation. Fertil Steril 110:1209–1215

Article  PubMed  Google Scholar 

Jayanti SEP (2008) Guarantors of our genes: are egg donors liable for latent genetic disease. Am Univ Law Rev 58:405–457

PubMed  Google Scholar 

Stoll J (2008) Swedish donor offspring and their legal right to information (Licentiate thesis). Juridiska institutionen, Uppsala universitet, Uppsala, Sweden, Uppsala

Google Scholar 

Ishii T, de Miguel BI (2022) Shifting to a model of donor conception that entails a communication agreement among the parents, donor, and offspring. BMC Med Ethics 23:18

Article  PubMed  PubMed Central  Google Scholar 

Lampic C, Skoog Svanberg A, Gudmundsson J et al (2022) National survey of donor-conceived individuals who requested information about their sperm donor—experiences from 17 years of identity releases in Sweden. Hum Reprod 37:510–521

Article  PubMed  Google Scholar 

Isaksson S, Skoog Svanberg A, Sydsjö G et al (2011) Two decades after legislation on identifiable donors in Sweden: are recipient couples ready to be open about using gamete donation? Hum Reprod 26:853–860

Article  PubMed  Google Scholar 

Hansson MG, Lochmüller H, Riess O et al (2016) The risk of re-identification versus the need to identify individuals in rare disease research. Eur J Hum Genet 24:1553–1558

Article  PubMed  PubMed Central  Google Scholar 

Indekeu A, Maas AJBM, McCormick E et al (2021) Factors associated with searching for people related through donor conception among donor-conceived people, parents, and donors: a systematic review. FS Rev 2:93–119

Google Scholar 

Hertz R (2022) Sociological accounts of donor siblings’ experiences: their importance for self-identity and new kinship relations. Int J Environ Res Public Health 19:2002

Article  PubMed  PubMed Central  Google Scholar 

Freeman T, Jadva V, Kramer W, Golombok S (2008) Gamete donation: parents’ experiences of searching for their child’s donor siblings and donor. Hum Reprod 24:505–516

Article  Google Scholar 

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