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Erin Nelson and Timothy Caulfield

When it comes to 'saviour siblings,' let's just stick to the facts Add to ...

The debate over embryo selection is going to heat up again with tomorrow's opening of My Sister's Keeper. The film depicts the story of a young girl who is the product of pre-implantation genetic diagnosis. She was selected as an embryo by her parents because she is a perfect genetic match for her older sister, who suffers from leukemia. She is, in other words, a "saviour sibling."

The debate around saviour siblings (and designer babies) flared with particular heat in England several years ago. Two families asked the Human Fertilisation and Embryology Authority (HFEA) for permission to select embryos that were perfect tissue matches for older siblings who suffered from blood disorders. Only one family was granted permission; the second sought treatment in the United States, and the older sibling now appears cured of Diamond-Blackfan anemia. The first family, after a court battle between the HFEA and an organization called Comment on Reproductive Ethics, eventually tried to use various reproductive technologies to create a cord blood donor sibling, but without success.

Since these cases, the HFEA has revised its views and now clearly permits the selection of embryos that may lead to the birth of a child who can provide compatible tissue "for the treatment of an existing child who is affected by a serious or life-threatening condition."

The parents in the British cases were seeking a tissue-matched cord blood donor. Umbilical cord blood is a rich source of stem cells that can produce all types of blood cells and thus can treat and potentially cure many types of blood disorders, including blood cancers such as leukemia. Cord blood is usually discarded at birth. There is no risk of harm to a newborn cord blood donor.

In the book on which My Sister's Keeper is based, the parents sought a cord blood donor for their daughter. But as time goes on, Anna, the "saviour sibling," undergoes more and more invasive procedures to help her sister. Ultimately, she is told by her parents that she will need to donate a kidney to save her sister's life.

As academics, we have mixed feelings about popular and media portrayals of complex issues in health law and ethics. On the one hand, public conversation about ethical and legal issues is essential and can further sound public policy. And popular media can provide an ideal vehicle to engage the public. On the other hand, it is too easy for issues to be distorted in such a way as to derail that useful conversation.

My Sister's Keeper is a perfect example of the latter. The very idea that parents are free to decide that one of their children could be forced to donate an organ to a sibling is foreign to Canadian law. There is no way that a cord blood donor could become an organ donor simply based on parental desires. In Canada, living organ donation is governed by provincial and territorial laws that require consent from the donor, and that (for the most part) preclude living donation by minors. Even in the United States, where minors can be living organ donors, we would be shocked to see a court decide - over the objections of the potential donor - that a child should undergo unnecessary surgery solely for the benefit of someone else.

But these issues, no doubt, will be the focus of the ethical debate that will surface in the wake of the movie's release.

The sensationalized portrayal of the legal issues also makes a consideration of the central ethical question - the moral acceptability of "designer" babies - more difficult to consider in a rational manner. Parents have kids for all sorts of reasons. Some are looking for a hockey star. Others need children to work in the fields or for long-term security. Still others have children by accident. Are these, or the myriad other reasons, inherently more ethically sound than the idea of a "saviour sibling"?

In Canada, the Assisted Human Reproduction Act gives the federal government jurisdiction to oversee reproductive technologies, leaving it free to decide whether saviour siblings should be allowed in this country. As parents, we are both grateful that this debate remains in the realm of the hypothetical. But we also feel deep empathy for those parents who find themselves in a situation that leads them to consider these options.

We hope the movie stirs interest in these issues, but public debate should be informed by the facts - both scientific and legal.

Erin Nelson is a research fellow at the University of Alberta's Health Law Institute. Timothy Caulfield is Canada Research Chair in Health Law and Policy and research director at the Health Law Institute.

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