University of Chicago molecular geneticist Janet Rowley received her Presidential Medal of Freedom Wednesday along with 15 other honorees, including Stephen Hawking and Sen. Edward Kennedy. Here’s video of the ceremony, courtesy of C-SPAN…President Obama’s warm introduction is at 15:50, and he presents Dr. Rowley with the medal at 35:00:

Here is President Obama’s introduction:

“After graduating from the University of Chicago School of Medicine in 1948, Janet Rowley got married and gave birth to four sons, making medicine a hobby and making family a priority. It was not until she was almost 40 that she took up serious medical research, and not until almost a decade later that she discovered, hunched over her dining room table examining small photos of chromosomes, that leukemia cells are notable for changes in their genetics — a discovery that showed cancer is genetic and transformed how we fight the disease. All of us have been touched in some way by cancer, including my family, so we can all be thankful that what began as a hobby became a life’s work for Janet.”

Two Chicago TV stations have also done profiles of Dr. Rowley since the Presidential Medal honor was announced, which you can watch online:

WTTW, Ch. 11

ABC-7 Chicago

You could say that Janet Rowley is having a pretty good year. In March, the University of Chicago molecular geneticist stood at President Barack Obama’s right arm as he signed an executive order clearing the way for federal funding of embryonic stem-cell research. Earlier this month, she was declared the winner of the 2009 Peter and Patricia Gruber Genetics Prize, which comes with a $500,000 cash award and a gold medal.

Today, another tremendous honor was announced for the still-active 84-year-old: the Presidential Medal of Freedom, the highest award an American civilian can receive from the White House. Among the other 15 recipients are Stephen Hawking, Sen. Edward Kennedy and Desmond Tutu; very prestigious company indeed.

In typical fashion, Rowley downplayed being recognized for her important research in the early days of cancer genetics.

“I felt very humbled, but also as though I didn’t deserve it,” Rowley said yesterday about her initial reaction to the honor. (You can watch the video interview with Dr. Rowley here: Janet Rowley talks about winning the Presidential Medal of Freedom)

With all due respect to Dr. Rowley, she’s wrong. When Rowley began to investigate the mysterious relationship between chromosomal abnormalities and leukemia in the 1960’s the scientific jury was still out on the relationship between genes and cancer. It was known that patients with certain types of leukemia had unusual chromosomes — notably the shortened “Philadelphia Chromosome,” associated with chronic myelogenous leukemia (CML) — but scientists debated whether that was the cause of the cancer or the result.

After starting a laboratory at the University of Chicago with help from legendary hematologist Dr. Leon Jacobson, Rowley used the newest chromosome-staining techniques to discover that the genetic segment missing from the Philadelphia Chromosome had not disappeared, but instead traded places with a segment from another chromosome in a process called translocation. This swap was not merely cosmetic; the gene for a particular protein that promotes cell division was separated from its natural genetic brake, causing the uncontrolled cell proliferation characteristic of cancer.

Rowley’s landmark paper on CML was published in 1973, but only after rejection by at least two scientific journals unconvinced of her findings. Eventually, chromosomal translocations were found to be responsible for several different cancers, and the concept of cancer as a genetic disorder became widely accepted in medicine. Her research also led to the development of the anti-cancer drug imatinib, aka Gleevec, which acts by inhibiting the protein that is excessively activated after the translocation.

For much of the past decade, Rowley served on President George W. Bush’s Council on Bioethics, advising the White House on controversial scientific topics such as embryonic stem-cell research. Having long opposed Bush’s limitations on federal funding for such studies, Rowley celebrated Obama’s loosening of those restrictions, writing for US News & World Report that the decision “has removed a key barrier to research and discovery.”

Rowley continues her research at the University of Chicago, and is an avid swimmer, sailor, cyclist and gardener. When I interviewed her for a Chicago Tribune article on the Gruber prize in late June, she said, in her understated way, that she was flattered to receive such awards and surprised that her work was still being acknowledged.

“It’s a great honor to have one’s colleagues still recognize one’s accomplishments,” Rowley said. “I suppose it’s a great pleasure to be around to be recognized.”

Last Friday the Obama administration published its new guidelines for federal funding of embryonic stem-cell research, ending the Bush-era restrictions on that work.

Except they didn’t end all of the restrictions. The new rules do not allow for work on cells made via research cloning (somatic cell nuclear transfer), and they require an informed consent process that may exclude some cell lines already derived with different consent procedures. Advocates at both antipodes of the stem-cell debate found something to criticize in the Obama rules. Researcher Irv Weissman of Stanford said the rules maintain an “ideological barrier” that will hinder progress, while Douglas Johnson of the National Right to Life Committee said the guidelines herald “an incremental strategy to desensitize the public to the concept of killing human embryos for research purposes.”

For now Obama seems to have struck an ideological balance, and some conservatives are giving him credit for it. Yuval Levin, a former Bush bioethics adviser who recently appeared on this blog, wrote on Friday that the new guidelines “certainly could have been worse” from a conservative’s perspective.

At the same time, the new rules mean that federally funded research can move beyond 2001-era technology. Bush’s guidelines, which restricted funds to lines derived before August 2001, allowed researchers to work with just 21 cell lines. Obama’s rules open the door to hundreds of additional lines created since 2001, many of them with genetic defects that can help scientists understand how diseases develop.

In moral terms this may even be a clearer approach than Bush’s policy, which claimed to protect nascent life but did allow some funding of research that required the destruction of human embryos. Those rules allowed fewer stem-cell lines to qualify for funding, yet the restriction was based on an arbitrary cut-off date. Why was it moral to allow funding of research on stem cells taken before August 8, 2001, but beyond the pale to allow funds for cells taken after that date?

Levin, who also served as executive director of the President’s Council on Bioethics, wrote that by keeping some limits on stem-cell research funding, Obama’s NIH has conceded “that the destruction of embryos for research is not an innocent and unproblematic practice, but must be constrained for ethical reasons.” So far, so good. As the bioethicist Art Caplan once told me in an interview, “A human embryo may not be a legally protected person, but it’s also not just any old stuff.” Levin then goes further: “These rules raise the question of why limits are necessary, and any serious answer to that question would lead us to conclude that these rules are inadequate. ”

That’s not at all clear to me. Under Bush’s old rules, an embryo’s fate might depend solely on the date when it was created. Under Obama’s new rules, the embryo’s fate is governed by something far less arbitrary - the parents’ intentions, informed by all the options available to them. It seems reasonable to trust that whatever parents decide, they will see their embryos as something more than raw material.

[Note: This post originally contained a quotation from a private classroom setting, which has been removed at the speaker's request.]

This was a long but exhilarating day for Janet Rowley, who was at President Obama’s side as he signed the executive order creating a new stem-cell policy. I caught up with her by phone in D.C. this afternoon as she waited for her plane back to Chicago. Rowley said the day’s events made her think back to the first meeting of President Bush’s Council on Bioethics, where her views in favor of embryonic stem cell research put her at odds with the administration.

“To be there today at the White House and see this signing, for me it was like coming full circle,” Rowley said. “When you saw the enthusiasm of the scientists who were there, the people from Congress, the patient advocates who were so important in keeping this issue alive during the dark years, if you will. It was just an unbelievable experience.”

For Rowley and other researchers, one of the most welcome themes of the day was what Rowley called “the de-linking of science and politics.” In fact, despite the historic nature of the stem-cell policy change, the other document Obama signed may have more far-reaching effects - a presidential memorandum on scientific integrity. That directive calls for more transparency in science and technology issues before the government, without suppression of findings for political reasons.

Although the Bush administration is over, the Council on Bioethics is slated to last until at least November of this year, and Rowley continues to serve on it. She said she believes some of the group’s reports have made an impact, if only to reflect how divided the country was on many issues in bioethics. Such groups can continue to address legitimate moral concerns; as Rowley said, “It’s very important because scientists have to reassure the rest of the country that we’re not out to make a bunch of clones or zombies.”

Another note: Friday’s analysis of the next steps for the NIH is up at the Huffington Post’s Chicago site; you can see it here.