Throw the baby away

Christian wades into a controversial topic:

I recently had a conversation with someone about Down Syndrome. The issue of "making a decision" during the pregnancy came up. They said that it might be best if the baby didn't make it to term. I whole-heartedly disagree. Everyone deserves a chance. Did you know, by the way, that about 92% of the pregnancies diagnosed as Down Syndrome end in an abortion? I'm not here to judge a couple or an expectant mother going through this. The news must be devastating and I can't begin to imagine what that is like. I'm just deeply saddened that the Down Syndrome babies don't get a chance to live.

Then, I was reading CNN.com this morning and read about a "cancer-free" baby being born in the UK. Essentially, the baby was created in-vitro, tested for the the gene linked to breast and ovarian cancer, and implanted when it cleared the test.

If the embryo had been found to carry a cancer-linked gene, she probably would have been discarded. Disgusting:

LONDON, England (CNN) -- The first child in Britain known to have been screened as an embryo to ensure she did not carry a cancer gene was born Friday, a spokesman for University College London told CNN.

Genetic screening allows lab-fertilized embryos to be tested for genes likely to lead to later health problems.

The baby girl is the first child in Britain known to have been screened as an embryo to ensure she did not carry a gene linked to breast and ovarian cancer.

She was screened in a lab, days after conception, for the BRCA-1 gene. People with the gene have a 50-80 percent chance of developing breast or ovarian cancer in their lifetimes.

British newspapers have dubbed the girl the "cancer-free" baby.

"This little girl will not face the spectre of developing this genetic form of breast cancer or ovarian cancer in her adult life," said Paul Serhal, a consultant at University College London Hospital and Medical Director of the Assisted Conception Unit.

"The parents will have been spared the risk of inflicting this disease on their daughter. The lasting legacy is the eradication of the transmission of this form of cancer that has blighted these families for generations."

Yet not everyone is thrilled with the idea of testing embryos for genes that could cause health problems later in life, a process known as preimplanatation genetic diagnosis.

"This is not a cure for breast cancer," said Josephine Quintavalle, co-founder of Comment on Reproductive Ethics, which describes itself as group that focuses on ethical dilemmas related to reproduction.

"This is simply a mechanism for eliminating the birth of anybody (prone to) the disease," she said. "It is basically a search-and-kill mechanism."

She opposes the procedure because embryos found to carry disease-causing genes often are discarded. She says that is essentially murder.

"They will be destroyed," she said. "They will never be allowed to live."

Doctors in Britain and elsewhere increasingly test embryos for genes that are certain to cause illnesses such as cystic fibrosis or Huntington's Disease.

What's different about the girl born Friday is that she is the first infant known to have been tested in Britain as an embryo for a gene that is merely likely -- not certain -- to cause disease.

In the United States, geneticists are free to test for any condition for which they can develop a probe -- and they're free to look for genes that are certain to cause diseases as well as genes that merely may pose problems later in life.

Quintavalle opposes any form of in-vitro fertilization where embryos are "killed," she said. But she is particularly troubled by the idea of screening an embryo for the BRCA-1 gene because carriers of the gene do not always develop the disease, and the disease is not always fatal.

"The message we are sending is: 'Better off dead than carrying (a gene linked to) breast cancer,'" she said. "We have gone very much down the proverbial slippery slope."

Peter Braude, one of the top British experts on the genetic testing of embryos, said he understands the ethical objections but focuses on the benefits.

"There has always been a vociferous group in opposition," he said. But "there are people who can benefit and I think they should be allowed to do so."

In fact, he argues that the procedure actually prevents abortions because it takes place on a three-day old embryo in a lab. Only embryos that lack the defective gene are implanted.

"I don't think you can equate eight cells in a dish to an embryo or a child," said Braude, head of the department of women's health at the King's College London School of Medicine.

For many couples, the alternative to testing an embryo is to conceive a child naturally and test the fetus weeks or months into a pregnancy. Some couples opt for an abortion when such testing reveals a defect.

Diagnosing an embryo genetically typically involves fertilizing an egg with a sperm in a lab, testing the resulting embryo and implanting it in the mother if no defects are found.

Braude agrees that testing for diseases that may not be fatal -- or may not manifest themselves for decades -- raises thorny ethical questions.

"How serious does it have to be before you throw away an embryo?" he asked. "Are you prepared to throw away a 16-week embryo for Huntington's, which will not manifest until age 40?"

In Britain, the Human Fertilisation and Embryology Authority determines the conditions for which geneticists can test. It has approved testing for more than 60 conditions since it was established in 1990.

The authority approved testing for the BRCA-1 gene in 2008.

Dr. Mark Hughes, who founded a genetics clinic in the United States, said he likes the idea of an authority that regulates what tests can be performed -- the system in place in Britain -- but believes that parents who want to test for genetic abnormalities should be allowed to do so.

At his Genesis Genetics Institute in Detroit, Mich., Hughes carries out about two tests a month for BRCA-1 or BRCA-2, a related gene.

"The couple is the best one to be making these decisions, because they live with these diseases," he said.

"When it hits your family over and over again, many couples are saying: 'Enough of this. Let's prune this out of our family tree forever.'"

He rejects the notion that parents will use genetic testing to remove all imperfections from children.

"You can get up on your high horse and say people are looking for perfect children, but let's give these families more credit," he said. "They just want one that has a fighting chance of not having a disease."

Hughes said he doubts genetic screening will ever be used to test all babies. That's partly because it costs the equivalent of about $11,755 -- 8,000 British pounds -- to screen embryos.

It's also because the process is very complex.

"It's gotten easier to do now than it was 19 years ago," when Hughes did his first test for cystic fibrosis, he said. "But it has not exploded, not burst onto the medical field like some technologies do.

"No one would use these technologies for a trivial reason. It's too much effort," he said. "Not just the money -- it's so many hoops to jump through for a couple that would prefer to make their baby on vacation rather than in a clinic."

I run to add another day

About four and a half years ago I started running, and soon after decided to run a marathon. I started running because the doctor kept telling me that with my high cholesterol and family history of heart disease, I was looking at a heart attack and possibly death by age 55. I started running to prevent that. Since then I've done my best to keep up my physical activity, never great at it, but I have become fitter than I was before 2004.

I have seen first-hand the effects of heart disease, cancer, and diabetes in my family. They're all terrible diseases, and in many cases, preventable. I run to prevent. I run to raise money to prevent them. I run to add another day.

Right now I am pre-training for the New Jersey Marathon in May of 2009 and I'm raising money for the Lance Armstrong Foundation. This article I found on Reuters.com explains why this is so important:

Cancer to pass heart disease as No. 1 killer

By Will Dunham

WASHINGTON (Reuters) - Cancer is on pace to supplant heart disease as the No. 1 cause of death worldwide in 2010, with a growing burden in poor countries thanks to more cigarette smoking and other factors, global health experts said on Tuesday.

Globally, an estimated 12.4 million people will be diagnosed with some form of cancer this year and 7.6 million people will die, the U.N. World Health Organization's International Agency for Research on Cancer said in a report.

"The global cancer burden doubled in the last 30 years of the 20th century, and it is estimated that this will double again between 2000 and 2020 and nearly triple by 2030," according to the report.

By 2030, 26.4 million people a year may be diagnosed with cancer, with 17 million people dying from it, the report forecast.

In men, lung cancer was the most common form in terms of new cases and deaths, while breast cancer was the most common type among women in new cases and deaths, according to the report. More men than women get cancer and die from it.

"This is going to present amazing problems at every level in every society worldwide," the IARC's Peter Boyle said at a news conference.

In the near term, cancer is expected to bypass heart disease as the leading killer globally in 2010, American Cancer Society Chief Executive Officer John Seffrin said. Cancer currently accounts for about one in eight deaths worldwide.

Trends that will contribute to rising cancer cases and deaths include the aging of populations in many countries -- cancer is more common in the elderly -- and increasing rates of cigarette smoking in poor countries.

Some rich countries have made progress in cutting cigarette smoking, which causes most cases of lung cancer as well as many other illnesses. In the United States, the most recent figures show that for the first time since records have been kept less than 20 percent of adults were smokers in 2007.

However, cigarette companies are finding new customers in developing countries. Seffrin noted that 40 percent of the world's smokers live in just two nations -- China and India.

Decades ago, cancer was considered largely a problem of Westernized, rich, industrialized countries. But much of the global burden now rests in poor and medium-income countries.

Many of these countries have limited health budgets and high rates of communicable diseases, while cancer treatment facilities are out of reach for many people and life-saving treatments are seldom available, Boyle said.

"There are more deaths in the world from cancer than from AIDS, tuberculosis and malaria combined," Boyle said.

At the same time, progress against cancer has been reported by authorities in such places as the United States and Europe.

For example, health authorities in the United States reported last month that cancer diagnosis rates are now dropping for the first time in both men and women and previous declines in cancer death rates are accelerating.

They attributed the progress to factors such as regular screening for breast and colorectal cancer, declining smoking rates and improved treatments.

Cancer-prevention opportunities exist in countries of any income level, Boyle said, noting that many types of cancer are caused by individual behaviors such as smoking.

Some other "modifiable risk factors" for cancer that Boyle cited included alcohol consumption, too much exposure to sunlight, lack of physical activity and obesity.

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Many people know that I am (in my own small way) an advocate for those living with cancer. The charity I always give to and ask people to help is St. Jude Children's Research Hospital because of the help they provide to children living with cancer. Although I never was able to run the 2006 NYC Marathon, I managed to raise over $1000 for St. Jude.

On the side, I've also been a fan of Lance Armstrong - as an athlete - but also with his work through the Lance Armstrong Foundation. I was recently on the website and saw a blog post (copied below) from Dr. Harold Freeman. Lance is taking the fight to the Presidential candidates this year in the hopes that they'll listen and do something about the disparity written about here:

Dr. Harold Freeman talks about Cancer in Harlem

I'm happy to write in today and share some of my thoughts about the cancer community in which I serve. Tomorrow I celebrate 40 years of service in Harlem.

Any substantial approach to reducing the cancer death and improving the cancer survival rate in an underserved community such as Harlem, must take into account the overarching causes of cancer disparities which are poverty, lack of health insurance and low educational level. There are two levels of solution, national and local:

(1) At the national level we need policy changes that would promote universal access to health care. Currently, there are an estimated 46 million Americans who are uninsured;

(2) At the local level we should promote community programs which assist and guide poor and uninsured Americans through the very complex health care system. I have pioneered such a program. It is called Patient Navigation. The role of this program is to eliminate any barriers that individual patients face in seeking to obtain timely quality cancer care. This kind of personal one-on-one assistance has been very effective in Harlem and is being applied at many other sites around the country; and

(3) We must also create effective public educational programs which will promote primary and secondary cancer prevention.

Someone asked me recently to share some of the highlights of my service in Harlem. I would like to share the following:

- I have gained a deep knowledge of the meaning of poverty and the meaning of race as determinants of survival and using this insight to enlighten scientists and the American public about the relationship between race, poverty and cancer.

- In 1979 I established free breast cancer screening and diagnostic centers both in the community and at Harlem Hospital. Both of these programs are still operating today.

- In 1990 I initiated the nation's first Patient Navigator program at Harlem Hospital. In published studies, I showed that there was a marked increase in 5 year survival from breast cancer when women were offered free screening and were navigated to rapid resolution including treatment if necessary. The 5-year breast cancer survival rate in Harlem increased from 39% before intervention to 70% after intervention.

- With a leadership gift from Ralph Lauren, I founded the Ralph Lauren Center for Cancer Care and Prevention in 2003. This Center is having a deep impact on providing access to screening, diagnosis and timely quality cancer treatment irrespective of the patient's ability to pay for services.

- For 25 years I was Program Director of a Surgery Residency Training program at Harlem Hospital. More than 100 surgeons were trained in this program which was fully approved by the American Board of Surgery.

- Through my work as a surgeon in the community of Harlem I was promoted to positions of National importance such as National President of the American Cancer Society and Chairman of the US President's Cancer Panel. This gave me the opportunity to look at the entire nation through the lens that I had developed in my work as a cancer surgeon in Harlem. To the extent that I have made contributions to the nation in cancer control, I attribute my success to my opportunity to work as a surgeon in Harlem. This allowed me to gain some understanding of the human conditions in which cancer and other diseases occur and to teach that we must understand those conditions -- economic, cultural, social, environmental, and political conditions -- in order to find remedies and solutions to the problem of excess mortality from cancer in poor communities.

Over 40 years I have seen significant progress in cancer outcome overall in America as well as progress in poor and minority communities. This is good. But while black Americans, for example, have improved survival overall from cancer, the most frustrating reality to me is that the gap in 5 year survival between black and white Americans has not changed in these 40 years.

In another 40 years what would please me would be that we as a society eliminated the disconnect between what we discover and what we deliver to all American people irrespective of their ability to pay and close the gap between what we know and what we do.