March 2009 Archives

El primer niño genéticamente seleccionado en España cura a su hermano

El menor enfermo sufría anemia congénita, que le obligaba a continuas transfusiones

ELPAÍS.com / AGENCIAS - Madrid / Sevilla - 13/03/2009

Andrés, de 7 años, sufría una enfermedad hereditaria, y hasta ahora incurable, denominada beta-Talasemia major (anemia severa congénita), que condena a quienes la padecen a someterse a continuas transfusiones sanguíneas. Sus padres querían tener un nuevo hijo y, además, querían que ese nuevo retoño pudiera ayudar a su hermano. En octubre nació Javier, el primer bebé cuyo proceso de gestación y tratamiento genético se ha desarrollado íntegramente en España. Este viernes el Hospital Virgen del Rocío de Sevilla ha confirmado por vía telefónica a ELPAÍS.com el éxito del tratamiento gracias al cual Javier ha curado a Andrés, que el pasado 18 de febrero fue dado de alta.

Los padres de los dos niños protagonistas de este acontecimiento médico -Andrés, que este jueves cumplió siete años y que sufría una anemia congénita severa incurable (beta-Talasemia mayor) y su hermano Javier, el bebé que nació el pasado octubre libre de esta enfermedad hereditaria- han expresado su alegría por el éxito de este proceso durante una rueda de prensa celebrada en el propio hospital.

La madre de los niños, Soledad, además ha defendido su decisión de seleccionar genéticamente a su segundo hijo: "yo quería tener otro hijo y si encima podía ayudar a su hermano... No lo dudé ni un momento y no he hecho nada malo".

En unas declaraciones recogidas por la Cadena SER, la mujer ha asegurado que la vida de su hijo, que quiere ser hematólogo de mayor, ha cambiado completamente desde la operación.

La consejera andaluza de Salud, María Jesús Montero, y los responsables de los diversos equipos médicos que han participado en este proceso han mostrado durante la rueda de prensa su "satisfacción y orgullo" por el hecho de que el sistema sanitario público andaluz haya sido el primero en el mundo en completar este complejo proceso que ha permitido la curación de Andrés.

Tras el nacimiento de Javier, el pasado 12 de octubre, fueron tomadas células madre de su cordón umbilical que fueron trasplantadas el pasado 23 de enero a Andrés. "Ha superado con éxito el trasplante, no ha necesitado ningún tipo de transfusión", señalan fuentes del hospital, que no obstante se muestran cautas: "Andrés tiene que pasar una revisión cada semana".

"Sus padres, naturales de Cádiz, optaron por el Diagnóstico Genético Preimplantatorio (DGP), una técnica que ofrece el sistema sanitario público andaluz y que les ha permitido tener un nuevo hijo libre de la enfermedad hereditaria y absolutamente compatible con su hermano puesto que tiene idéntico perfil de histocompatibilidad (HLA), con lo que ha sido el donante idóneo para posibilitar su curación mediante trasplante de cordón", indica el centro sanitario en un comunicado.

La aprobación en 2006 de la Ley de Reproducción Humana Asistida abría paso a esta nueva opción terapéutica. Esta norma ha recibido las críticas de la jerarquía católica de manera continuada. La última vez, en diciembre pasado, cuando el vicepresidente de la Conferencia Episcopal, Ricardo Blázquez, señaló que estas técnicas suponen "fabricar personas".

THE WHITE HOUSE

Office of the Press Secretary
______________________________________________________________________________
FOR IMMEDIATE RELEASE                         Monday, March 9, 2009

Remarks of President Barack Obama - As Prepared for Delivery

Signing of Stem Cell Executive Order and Scientific Integrity Presidential Memorandum
Washington, DC
March 9, 2009

Today, with the Executive Order I am about to sign, we will bring the change that so many scientists and researchers; doctors and innovators; patients and loved ones have hoped for, and fought for, these past eight years: we will lift the ban on federal funding for promising embryonic stem cell research. We will vigorously support scientists who pursue this research. And we will aim for America to lead the world in the discoveries it one day may yield.

At this moment, the full promise of stem cell research remains unknown, and it should not be overstated. But scientists believe these tiny cells may have the potential to help us understand, and possibly cure, some of our most devastating diseases and conditions. To regenerate a severed spinal cord and lift someone from a wheelchair. To spur insulin production and spare a child from a lifetime of needles. To treat Parkinson's, cancer, heart disease and others that affect millions of Americans and the people who love them.

But that potential will not reveal itself on its own. Medical miracles do not happen simply by accident. They result from painstaking and costly research - from years of lonely trial and error, much of which never bears fruit - and from a government willing to support that work. From life-saving vaccines, to pioneering cancer treatments, to the sequencing of the human genome - that is the story of scientific progress in America. When government fails to make these investments, opportunities are missed. Promising avenues go unexplored. Some of our best scientists leave for other countries that will sponsor their work. And those countries may surge ahead of ours in the advances that transform our lives.

But in recent years, when it comes to stem cell research, rather than furthering discovery, our government has forced what I believe is a false choice between sound science and moral values. In this case, I believe the two are not inconsistent. As a person of faith, I believe we are called to care for each other and work to ease human suffering. I believe we have been given the capacity and will to pursue this research - and the humanity and conscience to do so responsibly.

It is a difficult and delicate balance. Many thoughtful and decent people are conflicted about, or strongly oppose, this research. I understand their concerns, and we must respect their point of view.

But after much discussion, debate and reflection, the proper course has become clear. The majority of Americans - from across the political spectrum, and of all backgrounds and beliefs - have come to a consensus that we should pursue this research. That the potential it offers is great, and with proper guidelines and strict oversight, the perils can be avoided.

That is a conclusion with which I agree. That is why I am signing this Executive Order, and why I hope Congress will act on a bi-partisan basis to provide further support for this research. We are joined today by many leaders who have reached across the aisle to champion this cause, and I commend them for that work.

Ultimately, I cannot guarantee that we will find the treatments and cures we seek. No President can promise that. But I can promise that we will seek them - actively, responsibly, and with the urgency required to make up for lost ground. Not just by opening up this new frontier of research today, but by supporting promising research of all kinds, including groundbreaking work to convert ordinary human cells into ones that resemble embryonic stem cells.

I can also promise that we will never undertake this research lightly. We will support it only when it is both scientifically worthy and responsibly conducted. We will develop strict guidelines, which we will rigorously enforce, because we cannot ever tolerate misuse or abuse. And we will ensure that our government never opens the door to the use of cloning for human reproduction. It is dangerous, profoundly wrong, and has no place in our society, or any society.

This Order is an important step in advancing the cause of science in America. But let's be clear: promoting science isn't just about providing resources - it is also about protecting free and open inquiry. It is about letting scientists like those here today do their jobs, free from manipulation or coercion, and listening to what they tell us, even when it's inconvenient - especially when it's inconvenient. It is about ensuring that scientific data is never distorted or concealed to serve a political agenda - and that we make scientific decisions based on facts, not ideology.

By doing this, we will ensure America's continued global leadership in scientific discoveries and technological breakthroughs. That is essential not only for our economic prosperity, but for the progress of all humanity.

That is why today, I am also signing a Presidential Memorandum directing the head of the White House Office of Science and Technology Policy to develop a strategy for restoring scientific integrity to government decision making. To ensure that in this new Administration, we base our public policies on the soundest science; that we appoint scientific advisors based on their credentials and experience, not their politics or ideology; and that we are open and honest with the American people about the science behind our decisions. That is how we will harness the power of science to achieve our goals - to preserve our environment and protect our national security; to create the jobs of the future, and live longer, healthier lives.

As we restore our commitment to science, and resume funding for promising stem cell research, we owe a debt of gratitude to so many tireless advocates, some of whom are with us today, many of whom are not. Today, we honor all those whose names we don't know, who organized, and raised awareness, and kept on fighting - even when it was too late for them, or for the people they love. And we honor those we know, who used their influence to help others and bring attention to this cause - people like Christopher and Dana Reeve, who we wish could be here to see this moment.

One of Christopher's friends recalled that he hung a sign on the wall of the exercise room where he did his grueling regimen of physical therapy. It read: "For everyone who thought I couldn't do it. For everyone who thought I shouldn't do it. For everyone who said, 'It's impossible.' See you at the finish line."

Christopher once told a reporter who was interviewing him: "If you came back here in ten years, I expect that I'd walk to the door to greet you."

Christopher did not get that chance. But if we pursue this research, maybe one day - maybe not in our lifetime, or even in our children's lifetime - but maybe one day, others like him might.

There is no finish line in the work of science. The race is always with us - the urgent work of giving substance to hope and answering those many bedside prayers, of seeking a day when words like "terminal" and "incurable" are finally retired from our vocabulary.

Today, using every resource at our disposal, with renewed determination to lead the world in the discoveries of this new century, we rededicate ourselves to this work.

Thank you, God bless you, and may God bless America.

##