People with sickle cell disease (SCD) experience a shortened life expectancy, painful and debilitating symptoms, and a lowered quality of life. Thus, clinicians face ethical dilemmas when counseling their patients with SCD on whether to pursue HCT, which is currently the only potential cure for the disease, but which comes with a risk of mortality.
The authors of this review explore a number of pertinent ethical questions surrounding HCT for SCD, and outline a treatment guidance for hematologists, transplantation physicians and other health care providers confronting these issues.
The ethical guidance developed by the authors regarding HCT for SCD includes:
- Timing of HCT and achieving fully informed patient consent
- Choosing HCT for patients with SCD and psychosocial concerns
- Children as HCT donors for siblings with SCD
Patient eligibility for HCT is dependent on several factors, such as a patient’s experience with serious complications. Authors discuss the difficulty in objectively defining disease severity eligibility criteria for SCD. For example, while it is well accepted that a patient with SCD who has experienced an overt stroke has severe disease, other disease severity criteria can be more open to interpretation. Patients considering HCT should therefore be encouraged to enroll in a clinical trial.
Conclusions reached by the authors to guide the care of patients with SCD include:
- Liberal eligibility for matched sibling HCT for SCD does not violate ethical principles
- Deferring HCT in children until patients can consent is not ethically preferable
- Not offering HCT because of psychosocial concerns may be appropriate
- Minors can serve as donors if necessary safeguards are respected