New ethical guidelines for fertility preservation of ill children

Doctors treating children with life-threatening illnesses now have a new tool to help them grapple with the tough ethical questions surrounding fertility preservation for their young patients.

University of Melbourne bioethicist Dr Rosalind McDougall says treatments such as chemotherapy, while potentially life-saving, sometimes also caused infertility, even in pre-pubertal children.

“There is a new technique that aims to preserve children’s fertility, but it is ethically complex because it is unproven,” Dr McDougall says. 

“This is a crisis in each family’s life and it can be quite challenging for the doctors too.”

Working with the bioethics team and medical staff at Melbourne’s Royal Children’s Hospital, Dr McDougall and her colleagues developed what is believed to be the world’s first ethical framework to support doctors when deciding whether to offer fertility-preserving procedures to children.

This procedure involves removing and then freezing a sample of ovarian or testicular. When the child grows up it might be possible for the tissue to be re-implanted and to develop sperm or eggs. 

The Royal Children’s Hospital is one of just 26 hospitals around the world that offers such procedures to pre-pubertal girls and 16 hospitals that offer it to boys.

Dr McDougall says the framework, published in today’s Journal of Medical Ethics, grew from a series of questions that repeatedly arose with doctors working with childhood cancer patients.

This included whether the fertility procedure introduced greater risk to the child, whether it would delay other treatments and whether the child’s parents understood there was no guarantee the fertility procedure would work.

“We hope this tool will help hospitals consider whether it is appropriate to offer this procedure and remind them of the importance of focusing on individual children and the benefits or burdens for them,” Dr McDougall says. 

When Stella Davis was diagnosed with a germ cell tumour aged 20 months, the news left her parents Lara MacEwen and Mark Davis numb. After relapsing twice her third course of treatment included high dose chemotherapy, stem cell transplant and six weeks of intensive daily radiation, putting the toddler’s fertility at risk.

Stella was one of the first children in Melbourne to undergo fertility preservation, and at the time Ms MacEwen says she viewed it as one of the many procedures her daughter endured.

“You do whatever you can to give your child the best chance of living a normal life. It’s very comforting knowing that Stella’s tissue is in storage for the future.  We are very grateful to Stella’s oncologist Michael Sullivan for persevering in his efforts to make fertility preservation available to her before it became standard practice,” says Ms MacEwen.

Stella, now aged six, has been in remission for three years and has a little sister, Tilda.

(Source: The University of Melbourne, Journal of Medical Ethics)