michael h leemans

Hey everyone, I'm Michael from the Netherlands. I posted a link to my blog earlier, but it was removed, so I'm posting the contents of the post here: "During the writing of my thesis I came across several international institutes which do research on the use of gene selection to get rid of genetic diseases and to improve the physical body. I was very impressed by some institutes like CyprusIVF, but decided to connect my studies to my fascination with the east and go to the South-Korean institute: Demetra. This particular organisation is not only focused on gene selection to create a healthier new generation, but also on improving the current generation. They have made it their goal to end genetic diseases and to prolong our lifespans. In March 2015 I went to the city of Jeju to meet up with some of the staff members of Demetra. I hoped to find some examples of recent interesting cases. We all know the story of the Whitaker family in 2009, whose son Charlie suffered from DBA (Diamond Blackfan Anaemia). The parents of little Charlie decided to give him a sibling who could provide him with a stem cell transplant. Through IVF they ensured that newborn Jamie would be a perfect tissue match. Little Jamie is still alive today and lives happily with his two siblings. I hoped to find a similar case for writing my thesis, and be able to talk with the future parents on what drove them to go through with such a procedure. The case I eventually came across was something I could never have expected. A doctor at Demetra, named Seok Lee, gave me the information of Chae-Won and Jeong-Ho Ka, a young couple living in Seoul. Their son, Seong-Hun, suffered from a rare genetic disease called Hypoplastic Left Heart Syndrome (HLHS). Children born with this disease have an underdeveloped left ventricle in their heart. Because of this, the circulation of oxygenated blood through the body is severely restricted which eventually leads to death if a series of surgeries is not performed. The Korean couple had these surgeries performed on their child, but to no avail. The heart was weakened by the surgeries, so the only option left was a heart transplant to save their child. Unfortunately there was a great lack of infant heart donors and even less that would match his bloodtype. So the parents looked in desperation for other options and found Demetra. They found a way to give their son a sibling whose heart could be donated to save Seong-Hu, a very noble and yet morally questionable procedure. Chae-Won’s and Jeong-Ho’s new child was chosen through pre-implantation genetic diagnosis (PIGD) as a perfect tissue match for Seong-Hun. Then through In Vitro Fertilization one specific egg was selected, because it had the smallest chance to carry the disease, and was placed back into the womb. “It was extremely devastating to carry a child, already knowing his fate. But you have to understand that as a mother, you’ll do anything to keep your son alive ”. A big problem however was the state of the heart of the unborn sibling. A newborn’s heart is too small and fragile to sustain a three year old child. Luckily the people at Demetra were experimenting with hormones to speed up the development of specific organs. By using these hormones and the experimental CRISPR/Cas9 they could modify the genome of the sibling to stimulate the growing of the cells. As risky and experimental as it was, they managed to grow a strong, fully functioning heart and succeeded in replacing Seong-Hun’s old heart. The donor unfortunately didn’t survive the process. This might be the subject of moral debate, but the unborn donor child will serve as a scientific miracle in the world of genetics. The parents were sorry for the sacrifice they had to make, but were elated to know that their child was finally healthy and well. “We’re extremely thankful that we found Demetra. Of course we’re sad that the newborn could not survive, but thanks to this baby our first child has a new shot at life… So we think of him as a gift, a guardian angel. To honor and remember him, we even named him Suho Cheonsa. (guardian angel). And when Seong-Hun gets older, we’ll let him know that his brother saved him” I was amazed, and slightly shocked by this story. This savior sibling had given his life to save that of his older brother. Later, I even met the little four year old Seong-Hun and wondered if he knows how lucky he is to be alive. After talking to doctor Lee at Demetra for the final time, I returned home to the Netherlands to continue writing my thesis. The one question I keep thinking about is… is this ethical? That is of course up to debate, but whatever we may think, one little boy got a new shot at life, thanks to genetic selection and modification. It just goes to show how much we’ve advanced in modern science." here's a link to a promotional video Demetra made: so yes, I really want to know what you guys think. Are we allowed to take a life... To save a life? And even use genetic modification for these purposes?