Reproductive intentions in mothers of young children with sickle cell disease

Abstract

Background Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy associated with morbidity and mortality. We sought to understand family planning intentions of parents of young children with SCD including the awareness of three reproductive options (adoption, in vitro fertilization with egg/sperm donation [IVFD], in vitro fertilization [IVF] with preimplantation genetic testing [IVF/PGT]) to decrease the risk of having a child with SCD. Procedure Qualitative, semistructured, one‐on‐one interviews with 18 female parents of young children with SCD at an urban, tertiary care pediatric hospital. Results Half of the parents knew their hemoglobinopathy status or their partner's status before pregnancy. Eight parents chose to have no further children because of fear of SCD in another child. Awareness of reproductive options prior to study enrollment was limited. After brief introduction, 7 parents would consider adoption, 2 IVFD, and 10 IVF/PGT. Desire for a biological child, fear of parental jealousy, ethical or religious considerations, and cost affected the acceptability of these options. Participants universally wanted information about reproductive options available to others prior to pregnancy. Conclusions There is limited awareness and variable acceptability of alternative reproductive options available to decrease the risk of a future child having SCD. Participants universally endorsed the need for education regarding hemoglobinopathy status, SCD, and reproductive options prior to pregnancy because for many participants having a child with SCD affected their reproductive intentions. Educational interventions to ensure informed reproductive decision making should be sensitive to desires for a biological child, and ethical and financial considerations.

Characteristics associated with the perceived likelihood to become parents among young adults with sickle cell disease or sickle cell trait in the USA

“…Schultz et al. (2020) reported that parents of children with SCD experience fear and have less desire for more children. Within the group of participants who already had a child and reported the likelihood to have another, we did not evaluate whether the previous children had SCD or SCT and whether this status influenced their decision to have more children.…”

“…Most of the few reproductive studies on young adults with SCD or SCT have focused on individuals’ beliefs, attitudes, and the emotions related to their reproductive decisions (Gallo et al., 2010, 2016; Long et al, 2011; Schultz et al., 2020). Other investigators have assessed reproductive health‐related SCD knowledge (Anderson & Asnani, 2016; Lang & Ross, 2010; Vansenne et al., 2011) and the motivation to ask a partner to undergo HBB genetic testing (Ross, 2015a).…”

“…Other investigators have assessed reproductive health‐related SCD knowledge (Anderson & Asnani, 2016; Lang & Ross, 2010; Vansenne et al., 2011) and the motivation to ask a partner to undergo HBB genetic testing (Ross, 2015a). Investigators also focused on individuals’ beliefs about having biological children, pregnancy termination, their reproductive options and the influence of others on decisions (Gallo et al., 2010), their decisions to disclose their SCD or SCT status to their partners (Derlega et al., 2014), and their knowledge about reproductive choices of adoption and in vitro fertilization (IVF) procedures (Schultz et al., 2020). Others described the characteristics of families and plans for pregnancy (Hershberger et al., 2016a), perceived severity of SCD and SCT, and the ease of individuals determining their transmission risks (Hershberger et al., 2016b).…”

The role of ethicists in pediatric hematology/oncology: Current status and future needs

“…Existing areas of scholarly emphasis include assent and informed parental permission (consent), [33][34][35][36][37] early-phase oncology trials, [38][39][40][41] genomics, [42][43][44][45][46][47] communication, 48,49 chemotherapy shortages, [50][51][52][53] and refusal of recommended oncology treatment. [54][55][56][57][58] At present, ethics literature germane to pediatric hematologic disorders has primarily examined newborn screening, 59 preimplantation genetic testing, [60][61][62][63] genetic counseling, 64,65 and reproductive decision-making [66][67][68] for genetic diseases like thalassemia, SCD, and glucose-6-phosphate dehydrogenase deficiency. Recent years have seen an expanding focus on ethical issues related to genetic/genomic sequencing in hematologic disorders, 69,70 and on gene editing, 71 particularly related to SCD.…”

Specialist physicians’ referral behavior regarding preimplantation genetic testing for single-gene disorders: Is there room to grow?

“…In studies in which reproductive-aged patients carrying monogenic disorders were informed about PGT-M, one third to one half were interested in using it for future pregnancies (4)(5)(6)(9)(10)(11). For example, in a recent survey of parents of young children with sickle cell disease, 55% were interested in pursuing PGT-M for future pregnancies, citing the main reason for their interest as fear of ''financial and emotional burden'' of having another child with sickle cell disease (12).…”