Parenthood among individuals with Turner syndrome: results of an online survey of attitudes towards pregnancy, adoption, and surrogacy
Open accessAbstract
Choosing a route to parenthood can be a difficult decision for individuals with Turner syndrome, who must consider the unlikely possibility of spontaneous pregnancy, the potential need for assisted reproductive technology such as in vitro fertilization (IVF), and the risks of pregnancy-related complications. In addition, there are other options for parenthood, such as surrogacy and adoption. The perspectives of individuals with Turner syndrome regarding routes to parenthood have not been described in the literature, despite thorough investigation into the feasibility and safety of pregnancy in this population. We conducted a novel online survey of 226 individuals with Turner syndrome to assess their interest in parenthood, their perspectives on available routes to parenthood, and the factors that influence their decision-making. One-quarter of the respondents were already parents, including 54.5% who had achieved pregnancy and 45.5% who adopted. Of those who were not parents, 68.5% expressed a desire to become a parent. Overall, participants had the strongest interest in adoption as a route to parenthood. Interest in adoption was significantly associated with fear of pregnancy-related risks to their health and the health of a future child. Participants also reported interest in pregnancy and IVF. Interest in both pregnancy and IVF were significantly associated with a desire to experience pregnancy and to have a biological child. This study provides important insights into the perspective of individuals with Turner syndrome with respect to building a family and serves as a valuable counseling resource for clinicians facilitating patient decision-making about options for parenthood.
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Many individuals with TS endorse a desire for biological children and pregnancy.
“For example, though many individuals with TS endorse a desire for biological children and pregnancy, concern about the negative impact of pregnancy on cardiovascular health may cause some individuals with TS to forgo fertility preservation options.566,567”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [566]
Concern about the negative impact of pregnancy on cardiovascular health may cause some individuals with TS to forgo fertility preservation options.
“For example, though many individuals with TS endorse a desire for biological children and pregnancy, concern about the negative impact of pregnancy on cardiovascular health may cause some individuals with TS to forgo fertility preservation options.566,567”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [566]
There are significant fears about health consequences of pregnancy among patients with TS.
“A realistic estimate of pregnancy-associated health risks must be balanced with individual patient goals, given significant fears about health consequences of pregnancy among patients with TS.566”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [566]
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Clinical practice guidelines for the care of girls and women with Turner syndrome.
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- Authors
- Falsey, E., Cirino, A. L., Snyder, E., Steeves, M., & Lin, A. E.
- Affiliations
- MGH Institute of Health Professions (US)
- Brigham and Women's Hospital (US)
- Massachusetts General Hospital (US)
- Corresponding author
- Falsey, Erin
- Venue
- Journal of Community Genetics
- Published
- 2022-04-08
- Volume
- 13
- Issue
- 3
- Pages
- 263-270
- ISSN
- 1868-310X (ISSN-L)
- 1868-6001
- PMC
- PMC9270542
- OpenAlex
- W4225533653
- Cited by
- 9
- References
- 23
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 2 · 2023: 3 · 2022: 1
- FWCI
- 1.69
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Community Genetics (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Reproductive Medicine › Reproductive Health and Technologies
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Sexual Differentiation and Disorders
- Keywords
- Turner syndrome, parenthood, adoption, surrogacy, pregnancy, in vitro fertilization, assisted reproduction, patient decision-making, reproductive counseling, desire for children
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