'Three-parent babies' cure for illness raises ethical fear

[valkery]

[URL]http://www.guardian.co.uk/science/2012/jun/05/mitochondrial-genetic-disease-ethical-doubts[/URL]

[QUOTE]Aaron began to stand out at primary school. He was unlike other children in subtle ways that at times were hard to put a finger on. He
couldn't hold a pen properly. His balance was a little poor. He just seemed different from his classmates.

There is no subtlety to Aaron's condition any more. At the end of each day he gets so tired he resorts to a wheelchair. He wears a small heart monitor
in his chest after collapsing a couple of times without warning. Soon he will need a kidney transplant to replace one of his own failing organs. Aaron is
11 years old.

What was wrong came to light only when Aaron turned yellow and was admitted to hospital. Some way down the line, after blood and urine tests and
a kidney biopsy, doctors diagnosed mitochondrial disease. The condition varies wildly from patient to patient, striking at any age and with any number
of symptoms, but all have one thing in common: the damage it inflicts on body and brain gets worse with age. There is no cure.

"I don't know what the future holds for my son. We take each day as it comes," says Marian, his mother. "It could affect a few organs, his eyesight,
his hearing, and it can attack muscles too. He could end up with a walking stick, or in a wheelchair permanently. Sometimes I worry what will happen
in years to come if I'm too old to look after him." She has asked the Guardian not to use the family's real names.

[B]Mitochondrial disease runs in families, and more specifically is passed down from mother to child.[/B] Marian had never heard of it and was unaware of
anyone in her family being affected. Her mother was dead and she hadn't spoken to her sister in years. As soon as Aaron was diagnosed, doctors
urged Marian and her seven-year-old daughter, Catherine, to take tests themselves.

Though obscure outside specialist hospital units, mitochondrial disease will soon be the subject of a national debate and a matter for parliament. In a
laboratory at Newcastle University, scientists are working on ways to prevent the disease by pushing medical [URL="http://www.guardian.co.uk/science/genetics"]genetics[/URL] to the limit. [B]But there is no
guarantee that patients will ever benefit. Even if the techniques work safely, to offer them now would invite a jail sentence.[/B]

The law as written reflects a line that has never been crossed in medicine. [B]To prevent a case of mitochondrial disease, scientists would create an
embryo with genetic material from both parents and a third person acting as a donor.[/B] While gene therapy (inserting healthy genes) has been used to
treat patients in the past, this marks a new level of human genetic modification, and sets a precedent by introducing genetic changes that pass down
to future generations.

The ethical issues raised by the procedure are clear but for many doctors these are overridden by the chance to prevent life-threatening disease.

Senior figures in the medical world, including Sir Mark Walport of the Wellcome Trust and Sir John Savill of the [URL="http://www.guardian.co.uk/science/medical-research"]Medical Research[/URL]Council, last year
called on the health secretary, Andrew Lansley, [URL="http://acmedsci.ac.uk/p47prid100.html"]to draw up plans to change the law and regulate the techniques[/URL] so that they could be used to help
patients as soon as they are deemed safe.

To gauge public attitudes before a parliamentary vote on the issue, Lansley has asked the Human Fertilisation and Embryology Authority (HFEA) [URL="http://www.hfea.gov.uk/6896.html"]to
hold a national consultation[/URL], which is due to start imminently. Others are adding their voices. This month, the Nuffield Council on Bioethics[URL="http://www.nuffieldbioethics.org/mitochondrial-donation"] will publish
a comprehensive report[/URL] on the [URL="http://www.guardian.co.uk/world/ethics"]ethics[/URL] of the new procedures.

The debate that is coming will be unusually centred on Britain, because no other country is known to be so close to offering the service to patients.
In many countries, such as the US, Australia and much of Europe, the research is banned because it uses human [URL="http://www.guardian.co.uk/science/embryos"]embryos[/URL]. Where it is not outlawed,
few if any scientists are working on the problem.

The work in Newcastle is led by [URL="http://www.ncl.ac.uk/iah/staff/profile/doug.turnbull"]Doug Turnbull[/URL], a neurology professor and director of a £5.8m centre for mitochondrial research, set up in January by
the Wellcome Trust to help establish the safety of the techniques in humans. He sees scores of patients with mitochondrial disease each year. One
woman who attends his clinic lost six children to the condition within two days of birth. Her seventh and last child died, aged 21, last year.

"I wouldn't be driven to do this work if I didn't see the consequences of mitochondrial disease on families and knowing that there is no cure for these
conditions at the moment, nor is there any cure immediately around the corner," Turnbull says. Marian and her daughter agreed to have tests for
mitochondrial disease at Turnbull's clinic after Aaron was diagnosed.

Mitochondria are often cast, too simply, as the batteries inside our cells. They are tiny lozenge-shaped structures, a few thousandths of a millimetre
long, and some human cells contain thousands of them. They convert energy from fat and carbohydrates in our food and store it in the form of a
molecule called adenosine triphosphate (ATP). On a typical day, our mitochondria churn out 65kg of ATP, which powers all that our bodies do.

Picture a human cell as a fried egg. The yolk represents the cell nucleus, home to the 23,000 or so genes that define much of what we are. The
mitochondria are embedded in cytoplasm, or the egg white that surrounds the yolk. The mitochondria have a separate set of genes – 37 in all – or
around 0.2% of our total genetic makeup. How these tiny biological batteries came to be in our cells with a separate genome is one of the fascinating
tales of science. Mitochondria were once free-living bacteria, but were engulfed by the cells of our ancient ancestors 2bn years ago, in an act of
mutually beneficial evolution. In return for ATP, we give them food and shelter.

[B]Because mitochondria provide energy for our cells, any genetic defect they pick up can make those cells run badly or break down completely. The
worst affected parts of the body tend to be those that burn the most energy: the heart, brain and muscles. In practice, children who are diagnosed
early in life often develop catastrophic multiple organ failure.[/B]

[/QUOTE]

There is much more information in the source itself, but this was the bulk of the article.

[Upgrade123]

I'm personally for it. Saving lives should be one of our highest priorities as a civilization.

[darkedone02]

There should be a cure for every disease out there, and it's the doctor's and surgeon job to find and develop a cure for the thousands of diseases out there to save more lives. We need some people like these who dedicate themselves to helping others instead of helping themselves.

[ewitwins]

Wow, I didn't even realize that there was a specific disease for the mitochondria of our cells, that's pretty interesting from a biological standpoint. It's tragic from a humanitarian aspect as well, and I think this is a step that parents will start taking more often as time goes on. At the very least, those planning to become parents should have themselves checked genetically to make sure that there aren't any recessive genes in both parents that become dominant when they have a child, or any other issues of the sort. This will be great though for parents, such as those who are guaranteed to have mentally-handicapped children, to be able to have children while preventing such life-disturbing problems.

[Reds]

I think that you need to put aside your personal moral problems to make sure that anyone who is born as a result of you gets the best life they can get from a genetic standpoint.

[DireWolf]

Have they already done successful gene splicing in humans? If not this is a huge medical breakthrough and a gateway to stopping genetic illnesses.

[Yuluthu]

We cant do this, a book I read tells me not to