Don’t miss this fascinating story by CommonHealth contributor Karen Weintraub detailing an ethically questionable new fertility treatment that involves three biological parents in order to avoid a rare but devastating mitochondrial disease.
Here’s the top of the piece, published in today’s New York Times:
Alana Saarinen sat at the piano, playing smoothly and with feeling. Behind her, plastic toys shared floor space with a book of plays she’d been writing. Her mother beamed.
Alana is apparently a normal, well-adjusted 13-year-old. But there is something extraordinary about her — every cell in her body is different in a way that is nearly unprecedented.
Alana was conceived with genetic material from three parents: Sharon and Paul Saarinen, who provided the egg and sperm, and a second woman who contributed genes to Alana’s mitochondria, the tiny power plants that fuel every cell.
The experimental technique making this possible — a cytoplasmic transfer, in Alana’s case — was halted by the Food and Drug Administration in 2001. Now, despite uncertainties about its safety, scientists in the United States and the United Kingdom are urging legalization of a more targeted version. Critics say it hasn’t been adequately studied and crosses the line into genetic engineering.
The story also explores the origins of the experimental cytoplasmic transfer and explains how the technique is being improved. Karen adds this in an email:
Researchers never followed the children born in the late 1990s and 2000s of this cytoplasm transfer technique, so it’s not clear what the risks are of this form of conception. If they had been followed, women with mitochondrial disease might be able to use similar techniques with more confidence. Jacques Cohen has said that he and the hospital he worked for back then, St. Barnabas Medical Center, in Livingston, NJ, are now trying to follow up on the children who were born of his technique. It’s not clear when those results will be ready. Children like Alana, conceived at a different clinic, will not be studied.
So is this technique viable? Or is it too close to unacceptable genetic engineering? Like the ethicists quoted in the story, readers comments were all over the map:
Susan of Eastern Washington wrote: “Wow, this seems dicey to me. I understand fully the desire to sidestep mitochondrial disease, as I have seen firsthand its debilitating effects, the decline it causes children, and their early deaths. But to go into such a thing without reasonable assurances would be way too scary for me.”
But Dolly Patterson made the point: “When your baby is crying ih the middle of the night, it doesn’t matter how that baby was conceived. It just matters that you love and calm down the child.”