Introduction
Transgender, trans*, and gender non-binary (TGN) individuals are often overlooked as donors and/or are not meaningfully included in donor registration options. Because of this, it is unclear how many TGN donors there are in many donor pools. TGN individuals are eligible to donate without additional restrictions based on their gender identity and can be very motivated altruistic donors. Population estimates of the number of TGN people are difficult to measure, because of differences in methods to collect these data as well as challenges with respect to the safety/ability for people to come out as TGN in many parts of the world. Population estimates range from 0.1 to 3% but values in many countries are likely to be an underestimate.
Background
In general, the concepts of sex and gender are both critical when engaging with potential stem cell donors:
- Sex refers to the different physical characteristics of males, females, and intersex people, including differences in chromosomes and gene expression. In most cases, sex is inferred at birth (i.e. sex assigned at birth) based on a simple visual inspection of the newborn baby’s genitals. When asking a donor to report their sex, most often they would know and record their sex assigned at birth. Knowledge of donor sex is important due to the association with peripheral blood stem cell mobilization yield for the donor and risk of chronic graft-versus-host disease for the recipient.
- Genderis a social construct that refers to a person’s intrinsic understanding of themselves. There are many words people use to describe this such as (but not limited to) man or boy, woman or girl, transgender person, and nonbinary person. Gender identity is not confined to a binary (girl/woman, boy/man), nor is it static; it exists along a continuum and can change over time. There is considerable diversity in how individuals and groups understand, experience and express gender through the complex ways that gender is institutionalized in society. Knowledge of donor gender is important to respect the donor identity and to treat the donor sensitively and with respect.
Some individuals who are TGN undergo gender affirmation, a process by which an individual changes their gender presentation or sex characteristics to align with their internal sense of gender. As part of gender affirmation, some individuals adopt a new name (the name-to-use) and/or pronouns. These changes may not be adopted in all areas of an individual’s life and, for many TGN individuals, may not be reflected on legal documents. For some individuals, gender affirmation involves medical treatment (known as gender affirming medical care), such as hormone replacement therapy and/or various gender affirmation surgeries. However, many TGN people do not pursue medical gender affirmation.
Considerations for the stem cell donor registry:
- Data collection: For all donors, registries should record donor gender (with the ability to capture genders beyond the binary) as well as sex (i.e. their sex assigned at birth). However, registries should understand that asking donors about sex (or sex assigned at birth) can cause harm to some donors, especially if it is not clear why this information is medically necessary. Therefore, before donors are asked to report their sex and/or gender information, donors should first be explained why this information is needed, including the relevance to their donation care, to ensure donor participation and wellbeing during the screening process. Additionally, given the relevance of donor pregnancy history to the risk of chronic graft-versus-host disease in the recipient, and to be inclusive of TGN individuals, we also recommend asking donors of all genders to report their pregnancy history (including the option for donors to answer ‘not applicable’).
- Donor communication: For all donor interactions (including at initial registration, confirmatory typing, and workup), the donation team should refer to the donor using their name-to-use (which may different than their legal name) and pronouns. To avoid ‘dead-naming’ (i.e. using a name the donor no longer uses), a donor’s name-to-use should be asked (i.e. “Please let us know what name we should use when communicating with you”) and used in conversation as well as in letters/ emails. Donor registry records should reflect donors’ names-to-use to the maximum extent possible.
- Donor workup: As part of the detailed clinical history conducted at time of donor workup, the donor’s medical team should perform an anatomical inventory, which can help guide tailored conversations around sexual history and the need for pregnancy testing (see Grasso et al., J Am Med Inform Assoc 2021, for an example of how healthcare providers can ask about a TGN person’s anatomy and explain the relevance of these questions to the clinical assessment). All donors with a uterus, regardless of their gender identity, should be screened for pregnancy with a pregnancy test.
Any bloodwork abnormalities detected on workup should be investigated as with any other donor. Donors who receive hormone replacement therapy may need individualized assessment of lab values (e.g. hemoglobin) with respect to normal reference ranges.