Case
A 17-year-old girl returns to the rheumatology clinic for scheduled follow-up for systemic lupus erythematosus (SLE). She is accompanied by her mother and father. She has a history of autoimmune cytopenias and Class III lupus nephritis. She has responded well to treatment with mycophenolate mofetil and hydroxychloroquine and was successfully weaned off of prednisone three months prior. She and her parents report that she has been feeling well with no recent complaints. Laboratory tests from the previous week, including CBC with differential, inflammatory markers, complement levels and urinalysis, are unremarkable except for stable, low-level proteinuria. A urine pregnancy test—performed routinely for reproductive-age patients taking mycophenolate—is negative. There are no notable abnormalities on physical examination.
Per the rheumatologist’s usual practice when treating adolescents, the parents are asked to leave the exam room, and the patient is interviewed confidentially. Upon questioning, the patient discloses that she has recently become sexually active (consensually) with her 17-year-old boyfriend. She reports using condoms “almost every time” for pregnancy prevention. She states that she knows that mycophenolate can cause birth defects if taken during pregnancy, because her rheumatologist has provided previous education on the topic.
The patient’s parents are not aware that she is sexually active, and she asks the physician not to disclose this information because she fears her parents would be very angry if they knew. The physician recommends that she use a second, non-estrogen contraceptive method in addition to condoms. The patient expresses willingness to use a long-acting, highly reliable reversible contraceptive method, such as a progesterone implant or progesterone-releasing IUD. However, she does not want her parents to find out that she is using contraception. She worries that even if she goes alone to a medical visit to request contraception, her parents will receive a bill from insurance that divulges this information.
Teratogenic Medications & Teens
This case presents a number of ethical challenges to the treating rheumatologist. Examples: Mycophenolate mofetil has been remarkably effective in managing this patient’s SLE, but should the rheumatologist continue to prescribe it if the patient is at risk for pregnancy? If a different immunosuppressant is selected, what rationale for the change can be provided to the patient’s parents? Is there a way for this patient to obtain safe and appropriate contraception without unintended disclosure of sensitive information to the parents?
For some adolescents, parents and guardians can be allies in obtaining contraception if needed; in the case described above, the rheumatologist caring for this patient may want to explore the option of encouraging the patient to discuss the situation with her parents. However, many young people are uncomfortable discussing sexual health with their parents or lack trusting, supportive family relationships. In extreme instances, the disclosure of a teenager’s sexual activity to her parents could put her at risk for parental abuse or expulsion from the home.