In an article in the New York Times, Lisa Belkin relates the story of Laurie Strongin Allen Goldberg who tried to use PGD to create a sibling to provide bone marrow to treat their son, Henry, suffering from Fanconi anemia. Congress, however, shut down the lab that was working on P.G.D., calling it illegal stem-cell research. “That led to an 18-month delay that may well have cost Henry his life. Laurie went through nine in vitro fertilization cycles before and after that pause, and each time the embryos transferred were not only free of the genetic flaw that threatened Henry but were also his bone-marrow match. Nine attempts failed to take, and Henry had to settle for an imperfectly matched unrelated donor. He died in 2002 at the age of 7.”
The story goes on to end on an upbeat note, partly launching Laurie’s new book “Saving Henry: A Mother’s Journey”. Indeed, another couple read about their story a number of years ago and used PGD successfully to create a saviour sibling who did successfully save the life of his brother who would have died from Fanconi Anaemia. The story ends with the father of the boy who was saved writing,
“The reason for writing this letter is to thank you and especially to thank Henry. You see, if we had never read that New York Times article, we would have never tried P.G.D. Your determination to succeed at P.G.D. gave us inspiration. Henry did not die in vain. Henry is a pioneer who has and is saving lives every day. I can only imagine what it is like to lose a son. Hopefully you can find some comfort in knowing without a doubt you and your son helped save our son’s life.”
I want to be a bit more down-beat.
Economists call it “opportunity costs”. Sometimes it is a decision not to act, to fail to act, to do nothing. In this case, “it” is the avoidable death of an innocent 7 year old child, Henry. American Congress took a decision which arguably foreseeably contributed to, possibly significantly, the death of a child.
Our ethics can have life and death implications. In this case, the moral ideals of Congress arguably contributed to a child’s death. Congress, or its members, should take responsibility for this. Whenever there is a conflict between someone’s life or well-being and some moral ideal, we should be very confident in those ideals when they result in other people’s death or suffering.
So how valid are these ideals and what were the justifications? There are no good moral arguments against creating saviour siblings – see Spriggs M, Savulescu J. (2002) ‘Saviour siblings’. J Med Ethics, Oct; 28(5): 289. Provided that the saviour sibling is loved, cared for and treated as an individual and an end, the choice of these parents only brings about good and no harm.
The moral of the story is to consider the opportunity cost of your choice, and if the result of deciding not to act is the life or well-being of someone, you have to be VERY confident the ideal is worth dying or suffering for.
It is easy to spout high minded ethical ideals when someone else suffers the consequences of those ideals. Tragically, this kind of ethical imperialism is all too common.
Even the hyperconservative UK regulatory body, the HFEA, has reversed its prohibition of the use of PGD to create saviour siblings, bowing to the force of reason. Sadly, many children would have lived if this decision had been taken earlier.
Getting ethics right is an urgent, life and death matter.