Bioethics

Mario Cuomo’s Overlooked Contributions to Bioethics

Photo courtesy of SGT TRACY SANTEE, USAF / Wikimedia Commons / RNS

Then-New York Gov. Mario Cuomo speaks at a rally. Photo courtesy of SGT TRACY SANTEE, USAF / Wikimedia Commons / RNS

Lost in the extensive media coverage of Mario Cuomo’s recent death was mention of one of the former governor’s most enduring achievements: the New York state biomedical Task Force on Life and the Law.

During his first term as governor, Cuomo established the 25-member task force because he was concerned that as developments in medical technology and science accelerated, neither society nor state government was prepared for the critical decisions required in the face of such rapid change.

Cuomo’s instruction to the task force was to study the new frontier of bioethics and make specific public policy recommendations for state lawmakers.

The task force included Christian and Jewish clergy, physicians, nurses, lawyers, ethicists, philosophers, academics, social workers, community leaders, and hospital administrators.

I was a founding member of the task force in 1985. During that time, I recognized that some long-held beliefs must be updated, reinterpreted or sometimes even abandoned in the face of medical advances.

Cuomo wanted us to focus on the right of patients to informed consent about their medical conditions. 

DNA Experiment Yields Great Promise, High Ethical Risks

 Graphic courtesy Oregon Health and Science University via RNS.

Graphic courtesy Oregon Health and Science University via RNS.

PORTLAND, Ore. – Future generations could be stripped of mutations such as hereditary blindness or maternal diabetes, after a breakthrough study at Oregon Health & Science University.

But the new technique is also one short step from genetic design of future generations, said Marcy Darnovksy of the California-based Center for Genetics and Society. "These powerful new technologies have a whole bunch of wonderful and appropriate uses – and a number of ways they can be misused.

The researchers, led by OHSU biologist Shoukhrat Mitalipov, modified unfertilized eggs for the first time, a technique that offers great promise as well as ethical pitfalls. Such research is banned in many countries.

Three years ago, the Russian-born Mitalipov made headlines with experiments that created monkeys with genetic material from three parents. Now, his team has done it with human cells, setting the stage for possible experiments with humans.

The procedure dealt with what's called mitochondrial DNA, the small part of the cell that turns food into energy. Mitochondrial disorders can lead to neuropathy (a type of dementia) and nervous system disorders such as Leigh disease.

In a study published Wednesday in the journal Nature, the OHSU team described successfully transferring DNA from donor cells into other donor cells, fertilizing the eggs to create 13 tiny early embryos of roughly 100 cells each. These pre-embryos, called blastocysts, were converted to embryonic stem cells for future research.

Key to the technique: replacing the defective mitochondrial DNA with healthy genetic material from the egg of a second woman.

Fearfully and Wonderfully Made

Eric Brown holds his two-month-old daughter, Pearl Joy, on Oct. 1, 2012.

Eric Brown holds his two-month-old daughter, Pearl Joy, on Oct. 1, 2012.

NASHVILLE, Tenn. -- Eric and Ruth Brown believe nothing about daughter Pearl Joy's life is a mistake.

They say God gave Pearl her bright red hair and wide blue eyes, as well as the genetic disorder that created a cleft in her upper lip and caused her brain's development to stall in the first weeks in the womb.

"Things didn't go wrong," Eric Brown said. "God has designed Pearl the way he wanted, for his glory and our good."

That belief has sustained the Browns during the past six months, ever since a routine ultrasound revealed that the couple's third child has alobar holoprosencephaly, a rare genetic condition that's almost always fatal. A specialist told the Browns she would probably die in the womb and advised them to end the pregnancy early.

It's one thing to talk about God's will when life is good. It's another when a doctor is saying your baby won't live.

The Browns were forced to consider religious, medical and ethical issues most parents never will. And nobody could make their decision for them.

The Browns never considered abortion. They believe that Pearl is "fearfully and wonderfully made," as Psalm 139 puts it, and God alone should decide when she lives and when she dies.

Seeing Pearl's beating heart on the ultrasound also persuaded them to continue the pregnancy, even if the odds were stacked against her.

"If there is a chance, you say yes to that chance," Eric Brown said. "The only thing I know about parenting is that you say yes."

So far, Pearl has beaten the odds.

Few babies with Pearl's disorder make it to term, and of those who do, only 3 percent survive birth, according to the Dallas-based Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. Pearl has a particularly severe form of the condition, which means her brain never divided into two hemispheres.

She turned 11 weeks old Oct. 12, a milestone that the Browns celebrated by lighting 11 candles and singing "Happy Birthday."

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