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CHapter 031

The fact-findinghearing of the Bioethics Review Panel at the National Institutes of Health in Bethesda was carefully structured to feel collegial and uninti table in the third-floor conference roo, with notices for upco coffee in the corner The coffee was notoriously awful; nobody drank it

The six scientists on the review panel dressed a littleMost had put on jackets; one even wore a tie But they sat slouched and relaxed as they talked to the person being investigated, Dr Ronald Marsh, forty-one, who sat at the same table with theirl die?"

Dr Marsh was a professor of medicine at the University of Texas in Austin "She suffered froenetic deficiency "This girl was treated with diet and renal dialysis frorowth but no mental retardation She and her family both wanted this procedure, in the hope that she could have a normal life Not be tied to a machine forever As you know, it&039;s notkid"

Those around the table listened i to the future," Marsh continued, "we all recognized that she could not be es were already affecting her metabolism She was certain to die in the next three to four years It was on that basis that we undertook the procedure to insert the gene into her body" He paused "The risks were known"

One of the scientists said, "These risks were discussed with the family?"

"Of course In detail"

"And with the patient?"

"Yes She was a bright girl She was the one who first proposed the procedure She read about it on the Internet She understood that the risks were enorive the family an estimate of those risks?"

"We did We told them the chances of success were on the order of three percent"

"And they went ahead anyway?"

"Yes The daughter pushed theht as well take the chance"

"She was a minor"

"Yes," Marsh said "But she was also the one with the disease"

"You got signed releases?"

"Yes"

"We&039;ve read those releases Some of us felt the releases struck an unrealistic positive tone,risks"

"The releases were prepared by the hospital&039;s legal departned off on a statement that they had been fully informed of the risks What they were told is also noted in the patient&039;s charts We would not have proceeded without fully infor that speech, the head of the panel, Dr Robert Bellarmino, slipped into the room and eased into a seat at the end of the table

"So you did the procedure?" Dr Marsh was asked

"We did"

"What vector was used?"

"Modified adenovirus infusion, in combination with standard Barlow immunosuppression protocols"

"And the outcorees She had signs of an system failure on the second day Liver and kidney function did not recover She died on the third day"

There was a short silence

"If I may make a personal co experience for all of us at the hospital, and shattering for irl since infancy She wasbeloved by everyone on the staff She was a little ray of sunshine, whenever she came into the clinic We atteht I askto do? And I always feel I had an obligation to take that risk with the patient, if that hat she wanted She wanted life How could I deny her that chance?"

A cough "But, uh, your teaene transplantation"

"No We considered sending her to another team"

"Why didn&039;t you?"

"No one else would do the procedure"

"What did that tell you?"

Marsh sighed "Have any of you seen a patient die of CTFD? Their kidneys necrose Their livers shut down Their bodies swell, turn a purple-gray color They can&039;t breathe They&039;re in agony They take days to die Should I have waited for that to happen to this lovely girl? I didn&039;t think so"

There was another moment of silence at the table Thenow?"

Marsh shook his head "I haven&039;t been able to speak to them"

"They have stated in court documents that they weren&039;t informed"

"They were," Marsh said "Look: we all hoped it would work Everybody was optimistic And parents can&039;t really accept the truth - that a three percent success rate means ninety-seven percent of the patients die Ninety-seven percent It&039;s almost certain death They knew that, and when their hopes were dashed, they felt cheated But we never misled them"

After Dr Marshleft the room, the panel met in closed session Of the seven ued that Marsh was not telling the truth now, and had not told the truth before They said he was reckless They said that he gave genetics a bad name, which the field now had to overco off half-cocked

They were clearlythat he lose his license and his ability to apply for governrants

The head of the panel, Rob Bellar time Finally, he cleared his throat "I can&039;t help but reflect," he said, "that these arguments were exactly the same as those first voiced when Christiaan Barnard did the first heart transplant"

"But this isn&039;t the first of anything - "

"Going off half-cocked Not seeking proper authorization Liable to lawsuits Let inal statistics were His first seventeen patients died almost immediately He was called a killer and a charlatan But now, more than two thousand heart transplants are performed every year in this country Most live five to fifteen years Kidney transplants are routine Lung and liver transplants that were considered outrageous a few years ago are accepted now Every new therapy passes through a hazardous, pioneering stage And ill always rely on courageous individuals, such as Dr Marsh, to take risks"

"But so many rules were broken - "

"What would you do to Dr Marsh?" Bellarht You see it in his face His beloved patient died under his care What greater punishment will you inflict? And who are you to tell hi?"

"The ethics rules - "

"None of us looked in that little girl&039;s eyes None of us knew her life, her pain, her hopes Marsh did He knew her for years Willstand in judgment of him?"

The room was quiet

In the end, they voted to censure the University of Texas legal staff, with no penalty for Dr Marsh Bellarmino had turned them around, one of the panel said later "It was classic Rob Bellar God, and soot hurt, noHe&039;s brilliant at it"

But in fact, before the final vote was taken, Bellarmino had left the roo

Fro, Bellar with one of his postdocs The kid had come to him from Cornell Medical Center, where he had done remarkable work on the mechanisms that controlled chromatin formation

Normally, the DNA of a cell was found inside the nucleus Most people i staircase discovered by Watson and Crick But that staircase was only one of three forht take within the cell DNA could also forle strand, or a more condensed structure called a centromere The particular form was dependent on the proteins associated with the DNA

This was ienes were unavailable to the cell One way to control genes was to change the chroenes were injected into new cells, steps also had to be taken to keep the chroh the use of added cheh research on methylation by certain proteins, and their effect on chromatin structure The kid&039;s paper, "Genome-Protein Accessibility Control and Adenine Methyltransferase," was aIt was bound to be important, and wouldin his office with the kid, as looking eager as Bellarmino scanned the paper "Excellent, just excellent" He tapped the paper "I think this work does great credit to the lab And of course to you"

"Thank you, Rob," the kid said

"And you have the seven co-authors in place, and I ah on the list," Bellarmino said

"Third," the kid said, "but if you felt second position arranted - "

"Actually, I a a conversation we had a few months back, in which we discussed possible ested to you - "

"Yes, I remember"

"The very ly that I should be the lead author"

The kid blinked "Umm" He sed

"That ensures the paper will be cited more often," Bellarnitude And of course the exact listing is just a formality As second author you will be understood to have done the footwork here, the fill-in-the-gaps labor Froreater citations, and you will seeyour way" He smiled "I can assure you of that Your next ill be entirely independent And in a year or two, I&039;ll be supporting you for a lab of your own"

"I, uh" The kid gulped "I understand"

"Good, good Make these changes, shoot it back to me, and I&039;ll submit it toNature I think this deserves a better platform thanScience, which is a little down at the heels these days I&039;ll call over toNature and make sure the editor understands the iet immediate publication"

"Thanks, Rob," the kid said

"Anytienic Organis Creatures for Sale

in London, South African artist Laura Cinti displayed a transgenic cactus that contained hurew hu out is showing all the desires, all the signs of sexuality It doesn&039;t want to be trapped It wants to be released"

When asked about the public reaction to the cactus, Cinti said, "Bald men are particularly interested"

Artist Marta de Menezes createdwas different from the other She said, "People were very shocked at first They didn&039;t think it was a good idea" She said that, next, she would make the stripes of zebra fish vertical instead of horizontal so the fish would look es would be inherited

Finnish artist Oron Catts grew pig wings in culture fro bone marrow stem cells He said the artist&039;s tearow "We downloaded lots of pig songsand played them to the cells" He said the cells seeo-based artist Eduardo Kac created a transgenic rabbit called Alba that glowed green The fertilized egg of an albino rabbit was injected with GPF, the gene for green fluorescent protein frorew frolows A furor resulted Kac observed that "[the rabbit] does make some people uncomfortable," but noted that GPF is a common research tool and has been injected into yeast, molds, plants, fruit flies,forward to

Alba died preenic cactuses

In 2003 the first transgenic pet was offered for sale to the public A red-fluorescing zebra fish, it was created by Dr Zhiyuan Gong in Singapore, and licensed to a company in Austin, Texas It was marketed under the naencies, which concluded the fish were safe, so long as they were not eaten

CHapter 032

Madahtful boy, but he is having trouble with his math Addition comes slowly to him; subtraction is even more difficult However, his French is lad to know that," Gail Bond said "The move here from London was hard for him But I must admit, I&039;m surprised about his difficulty with math"

"Because you are a scientist, you mean?"

"I suppose so, yes I work at the Institut National here in Paris," she said, "and Evan&039;s father is an investment banker; he works all day with nueneticist, I aenes Soreat artist cannot draw But I ood if you do his homework for him"

"Sorry?" Gail Bond said "Do his homework?"

"Well, this must be the case," the teacher said "You or someone else in the household"

"I don&039;t understand"

"Evan&039;s homework is always perfect But when there is a quiz in class, he does poorly Evidently, so his homework for him"

Gail Bond shook her head "But I don&039;t knoho it could be," she said "My son comes home from school and only the housekeeper is there when he does his homework She doesn&039;t speak much French I return at five, and by then his homework is finished Or so he tells me"

"You do not review it?"

"No Never He says there is no need"

"Well," the teacher said, "he is getting help from somewhere" She took out the homework sheets and spread them on the desk "You see? Every proble at the papers "And these stains" There were sreen and white stains on the paper, droplets

"Often these marks are present Usually at the botto were spilled"

"I think I knoho is helping him," Gail Bond said

"Who?"

"It&039;s someone from the lab"

She unlocked thedoor to the apartment and heard Gerard call, "Hello, sweetheart," exactly as her husband did

"Hi, Gerard," she said "What&039;s neith you?"

"I need a bath"

"I&039;ll see that you get one," she said She walked into the hallhere Gerard was standing on his perch He was a transgenic African grey parrot, noo years old While he was a chick, he had received a variety of huood, baby, I&039;veher husband&039;s voice

"Thank you," she said "I have a question for you, Gerard"

"Okay, if you insist"

"Tell me What is the answer to thirteen minus seven?"

"I don&039;t know"

She hesitated "What is the answer to thirteen take away seven?" That was how Evan would phrase it