One of the first phrases that comes up when you’re talking about gene editing is ‘designer babies’. In that context, the term is used to convey the idea that if gene editing in humans were to become commonplace, people would use it to ‘upgrade’ their children with non-health related ‘improvements’. These changes could make future generations more intelligent, stronger, or faster. The word ‘designer’ is being used in the sense of a designer handbag – an expensive, but arguably frivolous commodity.

This article isn’t intended to argue the pros and cons of gene editing in humans. Instead, it’s aimed at analysing one part of the argument in particular: the phrase Designer Babies.

My problem is that it didn’t always mean beautiful, intelligent, future children. While the term has fallen out of mainstream use more recently, ‘designer babies’ used to be another way of saying ‘saviour sibling’. As a topic that means a great deal to me, I wanted to take this opportunity to remind us that not everyone hears the words ‘designer baby’ and thinks about some far flung future that we can scarcely imagine; for a lot of people, it’s something that hits a lot closer to home.

Saviour Siblings and Cord Blood Donation

‘Saviour sibling’ is the description given to a child born with the intention of providing a cord blood donation to a relative afflicted with a blood disease.

Cord blood is the blood that can be collected from the umbilical cord and placenta just after the birth of a baby and is notable because of the very high concentration of stem cells present in the fluid. Stem cells are highly sought after in medical research because they are the only cells which can develop into different types of body cells, an ability that has made them a central component of regenerative therapies. In theory, stem cells could be used to treat any number of diseases by supplying healthy cells to diseased tissues.

The stem cells found in cord blood are known as haematopoietic stem cells, as they can only differentiate into blood cells (instead of muscle or brain cells, for example). While this might limit their application, it has made them perfect candidates for treating both blood diseases and disorders of the immune system, which is primarily enacted and controlled through white blood cells.

If a suitable donor is available, a patient with these kinds of diseases can receive these stem cells, which should then begin to produce new, healthy blood cells. In cases such as leukaemia, where the stem cells in the bone marrow are producing immature white blood cells, this donation can start to create functioning cells to counteract the diseased tissues. To patients who are seriously ill, these donations can save their lives.

The catch in this system is, as with most forms of donation, finding a suitable donor. This is a particular problem for this form of stem cell donation as it directly influences the recipient’s immune system; while in most transplants, the recipient’s immune system might attack the donated organ, in this case, the donation has the potential to attack the recipient. As a result, these donations have to come from people who are very genetically similar to the recipient to prevent rejection. The people most genetically similar to you are your immediate family.

Saviour siblings arise when there are currently no family members who are a match to the ill person. Using IVF, it is possible for the parents to select an embryo that they know will be a match via Pre-implantation Genetic Diagnosis (PGD), and then carry that child to term. Once the child is born, the cord blood can be collected and donated to the diseased sibling and, hopefully, cure their condition.

If you want to find out more about donating cord blood in the UK, the NHS have their own cord blood bank to help you.

The ‘First’ Designer Baby

As far as we know, the first designer baby born who had been conceived through PGD and IVF was a boy called Adam Nash. He was born via Caesarean section on the 29th August, 2000, to American parents, Jack and Lisa, as the younger sibling of 6 year old Molly. Molly Nash was born with a rare genetic disorder called Fanconi anaemia, which is characterised by severe bleeding and immune system deficiencies; most patients with Fanconi anaemia will die by the time they reach 9.

Adam was formed from 1 embryo of a selection of 15, chosen both because of the similarities between his genome and that of his sisters, and for his lack of Fanconi anaemia-linked genes. He was actually the result of a third round of IVF, the first two having failed to produce a successful pregnancy, but Adam was able to develop normally and healthily. When he was born, the blood from his umbilical cord and placenta was collected and transplanted into Molly.

“That was her transplant, and that was all Molly ever needed to cure her leukaemia and her bone marrow failure,” said Lisa Nash in an interview in 2008.

The procedure was a total success. The donation was able to help Molly overcome her disease completely and Adam continued to develop as a healthy child without the condition his sister had suffered. In subsequent interviews, the family have spoken about how glad they are they underwent the treatment.

Seventeen years after the transplant, Molly, Adam, and Delaney, their younger sister, are all still living healthy lives.

 The birth of Adam Nash was just the beginning of this type of treatment and three years later, the first British designer baby was born: Jamie Whitaker. Jamie’s elder brother Charlie had been diagnosed with a different form of anaemia to Molly, known as Diamond Blackfan Anaemia (DBA) which results in impaired production of functional red blood cells. As with Fanconi anaemia, the condition is fatal.

Because of restrictions be the HFEA in the UK governing PGD, the Whitaker family travelled to the same clinic the Nash family had used in Chicago to conceive Jamie. The nature of Charlie’s treatment meant that timing their trip correctly was very important.

“Charlie couldn’t last beyond three weeks without a transfusion, which for medical and financial reasons was best done in the UK,” said mother Michelle Whitaker in an interview in 2011. “We travelled out in October 2002. Charlie had a blood transfusion on a Friday and we all flew to Chicago the next day. I had my embryos harvested on Monday. Six out of 13 survived more than six days, three were a tissue match for Charlie, two were implanted and we flew home.

“One of the embryos took and I had a normal pregnancy. I felt very emotional when Jamie was born at Sheffield Teaching Hospital because he was so special. Stem cells were removed from the umbilical cord, frozen, and stored. Although Jamie was perfect genetically you can’t diagnose DBA in the womb as it only becomes obvious when the body has to produce its own blood. We waited until we were sure Jamie didn’t have DBA, which took about a year.”

Once Jamie had been confirmed to be safe from DBA, the Whitakers discussed the risks of the transplant (which had a 5% chance of killing Charlie despite the genetic similarities) and decided in 2004 to carry out the procedure. Charlie underwent several rounds of chemotherapy to kill off his diseased bone marrow, before the stored stem cells were transplanted. The first improvements were seen within a few days, but it took seven years from Jamie’s birth before Charlie was declared healthy.

Nonetheless, Charlie and Jamie have both since grown into healthy teenagers, with neither showing any signs of DBA.

The idea of having a child to save an older sibling existed prior to Adam Nash’s and Jamie Whitaker’s births, although the technology wasn’t really up to the challenge. Instead, parents could conceive a child naturally (or using IVF with untested embryos) in the hopes that the newborn would be a match for their sibling, statistically more likely than finding a stranger who was a match.

In either case, however, there are ethical considerations that need to be made and several arguments have arisen against the idea of saviour siblings. One of the most high-profile instances of this debate coming to light came in the form of a book and, subsequently, a movie adaptation: My Sister’s Keeper.

Jodi Picoult and the Ethics of Adam Nash

The central character of Jodi Picoult’s book My Sister’s Keeper is a girl called Anna, who was born through IVF to act as a saviour sibling for her older sister Kate. Within the narrative of the book, Anna decides to sue her family for the rights to her own body, after she is asked to donate a kidney to her sister when Kate’s renal system starts to fail. While multiple sides of the argument are explored within the narrative, the main protagonist largely considers her situation with bitterness and displeasure.

The reason this book is relevant is because the book was based off the story of the Nash family. The family themselves have denounced the book and film as inaccurate and harmful, and several physicians have voiced opposition to the appearance of the doctors in the book trying to convince Anna and Kate’s parents to resort to designer babies against their initial wishes.

However, the story has also raised a large amount of interest in the topic that might not otherwise have been so prominent. The biggest concern that people have raised is the implication that the younger child is being born solely for the sake of their sibling and not because the family want another child, or for the child’s own sake. While this hasn’t been the case in the Nash and Whitaker families, there is nothing to stop parents from having another child who may ultimately grow up to feel unwanted or secondary.

There is also the chance that IVF and PGD will act as the ‘slippery slope’ towards using gene editing to create babies who are engineered to be suitable for donations, which is a whole debate in and of itself. If you’re interested in learning more about the ethics of gene editing, you can read more in our Gene Editing 101, but it won’t be discussed here.

In My Sister’s Keeper, Anna’s objection is as a result of her continued need to donate to her sister, but this isn’t necessarily applicable to this argument. In every real world case of designer babies I’ve come across, the donation has been limited to cord blood upon birth and nothing else. The idea of continually acting as a donor has not been approached.

No one is trying to argue that Molly and Charlie’s recoveries aren’t the best outcomes for the family, but there is certainly a question of whether or not the means to achieve them were ethical. Members of both the Nash and Whitaker family have publically spoken out about why they chose to undergo the process and how glad they are in retrospect that they did, but the sample size is much too small to try to consider this a consensus.

As well as the concerns specific to designer babies, there are also the usual protests against IVF to consider. As I said earlier, Adam Nash was 1 of 15 embryos created for the third round of IVF. Assuming the previous rounds were of equal size, the entire process utilised 44 embryos that were fertilised but not allowed to (or were unable to) develop any further, making the process inaccessible to certain people because of their beliefs.  

Designer babies are clearly a contentious issue and there are strong beliefs on both sides. I think that this divide is, in part at least, due to the terminology being passed around and the inconsistency with which it is discussed. Often, topics like this are a matter of perception and ‘designer babies’ isn’t a term with much positive feeling behind it.

Why Saviour Siblings Isn’t the Best Term and Why It Matters

Throughout this blog, it might seem like the solution to using the term designer babies is simply to substitute it for ‘saviour sibling’. The Whitaker family in particular have indicated that they much prefer the term. Even with the contention surrounding the practice as a whole, ‘saviour sibling’ has arguably more positive connotations than its counterpart and there isn’t a chance of the term being confused with the gene editing debate. But there are problems with this approach too. It is most easily summed up like this: not always siblings, not always saviours.

Siblings

Siblings / Amanda Tipton

The first part is simple; it’s possible to act as a designer baby for a cousin, or an aunt or uncle, or any number of close relatives. The baby doesn’t have to be a sibling to the ill family member. The more distant the connection, the less likely it is that a potential embryo will be a match but it’s not inconceivable for this scenario to occur.

The second part is really the sticking point for me and it’s why this is a topic so close to home. I would consider both myself and my brother as designer babies, although in this instance it’s a term I need to qualify. My brother was born in 1990, and myself in 1994, sometime before technology advanced to the point that IVF and PGD could be used to establish the most suitable embryo for a transplant. Instead, we were both naturally conceived in the hopes that we would be a match to my eldest brother, Matthew.

When he was 10 years old and living across the world in Papua New Guinea, my brother developed what initially appeared to be a virus that doctors couldn’t quite work out. Over the next few years, through a rapid relocation back to the UK and a complicated misdiagnosis, it was established that Matthew had a Philadelphia chromosome which had led to Acute Lymphoblastic Leukaemia (ALL). In part because of his misdiagnosis, Matthew’s initial treatment was much milder that someone in his position would optimally be receiving, so by the time his condition was understood, he’d already been ill for several years.

As chemotherapy and radiotherapy were failing, my parents turned to the idea of designer babies as a solution. They were told that given Matthew’s disease and blood type, there was a 1 in 4 chance he would have a sibling that would be a suitable match; at the time, he already had two younger siblings who were found to be too genetically distinct. When my youngest brother was born in 1990, he was unfortunately found not to be a match and so, after more treatments, I was born in 1994.

Prior to my birth, doctors were able to use various tests to establish that while I was healthy, I was also not a match for Matthew. Out of two ‘saviour siblings’, neither were able to act as donors for my brother and a month after I was born, Matthew passed away; as a result, I’ve never considered applying the term to myself because it simply isn’t true.

In my opinion, neither the term designer baby nor saviour sibling is particularly suitable to the role it currently fills. I was someone who grew up using the term designer baby and it’s still the one which feels most natural to me but it has been used so negatively within the gene editing discussions that it no longer means what it used to. Saviour sibling, as I’ve said, is never a term that’s fit me.

Without an alternative, I think that it’s simply important that people using the term designer baby like an insult are aware that it hasn’t always meant gene editing. I understand that the gene editing debate is something that people feel very strongly about, as they should, but it’s not the only issue within genomics that others might be sensitive to.