Music
VO
It is the essence of life itself: the 6 billion chemical letters that make up our DNA. And along this string of molecules, like pearls on a necklace, groups of letters called genes that carry the code that explains, cell by cell, how we’re created.This is the human genome, the operating system of our body, what some are calling the book of life.
Washington Uni
Music Continues
VO
Deciphering the genome has become the holy grail in the greatest scientific race of our time. Much is at stake. Not only billions of dollars and immense scientific prestige, but the fear that this book of life will not be given to mankind for the benefit of all but locked away for the financial advantage of a few.
Music
Venter on Sailboat
Yelling
VO
They call Dr. Craig Venter the Sorcerer – the same name he gave to his 82-foot racing sloop.
Venter & Crew Sailing
VO
On the rare occasions he can get away from running his four and a half billion-dollar biotech company, Dr. Venter is out on Chesapeake Bay – weather not withstanding.
Hey, when was the last time I was sailing. I don’t care if everyone freezes their ases off, we’re staying out for a while.
VO
To many Venter is a genius – a maverick scientist with an unparalled reputation for finding genes, a multimillionaire with one simple goal: be the first to decode the human genome.
More Venter & Crew sailing
VENTER THOUGHT TRACK
It’s the beginning of the future of medicine. It’s the end of ignorance.
VENTER GRAB IN VISION
At the start of this decade 1991 there were less than 2000 human genes known, at the end of the decade, or start of the new decade, we’re going to have all 75,000 of them.
Dr. Robert Waterston on Bike
street sounds
VO
Racing Dr. Venter to the finish line is one of his old colleagues. Dr. Robert Waterston runs the Genome Sequencing Center at Washington University in St. Louis.
WATERSTON AT TEAM MEETING
Girl:
I’ve got it all set up ready to go, soon as I get it, I’m going to do it…
VO
Dr. Waterston’s lab is a key part of the Human Genome Project, a 3 billion dollar, 13-year public effort that involves hundreds of scientists and half a dozen countries around the world. Dr. Waterston Actuality: And so the reason for the shatter is basically to find out…. Like Dr. Venter, their goal is to be the first to sequence the human genome.
More Meeting
DR. WATERSTON THOUGHT TRACK
this is a once-in-a-species opportunity. This is a more than once-in-a-lifetime.
DR. WATERSTON GRAB IN VISION
…It's akin to the realization in the Renaissance that the earth was not the center of the universe.
Lauren Reimer on Scooter
Natural Sound
VO
The scientists aren’t the only ones in the race. Ten-year-old Lauren Reimer has a genetic disorder that makes her so weak she can barely walk. Decoding her faulty gene, and engineering a new one is her only hope for a cure.
Lauren in playground with Family
Playground Sounds
BOB REIMER THOUGHT TRACK
…Lauren’s disorder is very rare, part of the solution will be finding the gene.
BOB REIMER GRAB IN VISION
And to do that, the genome is very important.
Management Meeting at Celera Exterior of Celera I don’t have a quick answer but I’ll get Laudel..Gene is the one who is really concerned so…
CU Venter
Venter:
I just want you to know that amongst your other number one priorities this is one as well.
VO
Dr. Craig Venter is a man in a hurry. And there’s a lot riding on getting the genome first.
DR. VENTER GRAB IN VISION(Continuation of above)
SUPER:
Dr. J. Craig Venter
President & Chief Scientific Officer Celera Genomics
can’t go fast enough, you can’t make discoveries fast enough. So, in terms of really changing medicine, we don’t have the luxury of a slow academic pace just to treat it as an academic project, this really affects people’s lives.
Celera Computer Facilities
VO
To satisfy his obsession with speed, Craig Venter assembled the largest civilian computer facility in the world.
It’s these machines that catapulted him to the front of the race and form the backbone of his business plan.
Control Room
VO
Celera Genomics is an Internet company run from this control room. It plans to publish the raw human genome sequence for free. But it will charge from five thousand to 50 million dollars for access to its analyzed data.
VO
And it’s the computers that allow Dr. Venter to use a radical new strategy to reassemble the book of life at lightening speed. He calls it the Whole Genome Shot Gun Method because it begins by blasting the genome into 70-million piecessmall enough that a computer can decode.
VENTER GRAB IN
… and then it’s a giant jigsaw puzzle to put back together. Scientists like puzzles, this is a puzzle that we need very large computers to help solve, but it’s a new approach that allows it to go very rapidly in one place.
Time Lapse at Washington University
Music – hurried and busy
VO
Meanwhile at Washington University, the public project operates very differently.
Music Up
VO
Unlike Celera, and other commercial gene- hunters, every day the Human Genome Project publishes its raw data on the Internet every day.
Music Up
VO
As well, the process is much more labor intensive because here they start with a step that Dr. Venter skips: mapping.
Petrie Dish Sequence
VO
If our DNA was a road made up of chemical letters stretching across the country, mapping finds the landmarks and uses them to work out where on the road each letter belongs. To do this, the public project cuts up the DNA, clones each piece thousands of times then uses the copies to laboriously rebuild the road map.
Sequence machines being set up.
VO
Then, just like at Celera, each section of road is cut up into even smaller pieces. A machine then reads each chemical and marks it with a color.
VO
Then, using the map, each decoded section is returned to its place on the road and the process is repeated until the entire genome is complete from one end to the other.
Dr. Francis Collins in Office
“…I know his email is not working that’s why I’m calling rather than sending a note.”
VO
Overall it’s a far slower method than Celera’s, but Dr. Francis Collins, the man in charge of the human genome project, argues it’s the only way to ensure an accurate result.
FRANCIS COLLINS GRAB
SUPER:
Dr. Francis Collins
Director, National Human Genome Research Institute.
The private efforts are doing what we call a rough draft, where they sequence a lot of DNA, but they don’t really take responsibility for putting it altogether correctly. There will be gaps, there will be mistakes in the assemblies, there will still be an incredible amount of useful information, but it will not be a complete contiguous highly accurate product, which we would want for all-time.
CRAIG VENTER GRAB
Francis Collins has the job of trying to defend a multi-billion dollar budget for doing the same thing a small biotech company is doing with 50 people. And he’s… and it helps if you’re trying to defend a budget to create an enemy and he’s trying to create an enemy out of us.
FRANCIS COLLINS GRAB
This is the book of life. Are we going to accept a book that is going to have some missing pages, a lot of typos, a lot of mistakes, chapters that have been scrambled and something shouldn’t be there that is. Now that might be okay for a first look, but that isn’t what we want in the long run, the public effort will do it right.
CRAIG VENTER GRAB
Our work will be of the absolute highest scientific quality. Our sequencing accuracy will be a higher sequencing accuracy than done by any group in the world.
LA Scenic Shots
Atlantic TV Field Tapes
VO
While the animosity between the public and private camps over method may be intense, the real competition is over who will control the human genome and the medical breakthroughs it will unleash.
Dr. French Anderson and Lab
Are the tissue samples ready…Ya, I’m going to go get them.
VO
Dr. French Anderson is the father of gene therapy – a revolutionary branch of medicine.
VO
For 35 years he’s worked to find ways to use our genes to cure disease. The method he pioneered is deceptively simple.
DR. ANDERSON THOUGHT TRACK
… gene therapy is simply the putting of a good gene into a patient’s cell to take the place of a bad gene or a gene that doesn’t function properly.
VO
As Dr. Anderson discovered, when the code in a gene is incorrect it sends out a faulty message and we get sick. And he believes that once the human genome is decoded the future of gene-therapy will be unlimited.
DR FRENCH ANDERSON GRAB
SUPER:
Dr. French Anderson Director, Gene Therapy Laboratories University of Southern California School of Medicine
Medicine does not now cure much of anything. If you have something that an antibiotic can treat, a bacterial infection, you can cure it. If you have appendicitis, you can be cured by an operation. But almost every other disease, all we as physicians do is treat the symptoms in order to allow the body time to heal itself. What gene-based medicine will do over the next century is to revolutionize the whole process of medicine. Diseases can be treated at their core which will mean, at the gene level.
Lee Dupree Taking Medicine
Lee:
One day I’m going to get out there and play football againHilda: Just like you used to hunh?VO: Lee Dupree has colorectal cancer. Five years ago doctors removed his rectum to save his life.
Lee:
I have to take this crap every day.
VO
A year ago when Lee thought he had the cancer beat, it came back again.
Lee:
Man, I tell you, I've never felt that bad about anything in my life. Nothing.
LEE DUPREE GRAB IN VISION
It put a stop on my life. Stopped my life, just like that.
Lee’s acting shots
VO
It wasn’t always like this. Lee had a thriving career as a journeyman actor. Over the last two decades he’s appeared in more than 20 plays and movies. But the cancer’s put an end to that.
LEE DUPREE GRAB IN VISION
it takes a very big chunk out of your life. Sometimes when I'm here I just start crying. I just start crying because
Doctor's visit
There’s still an abnormality there. I don’t think we can say we’ve eradicated the tumor. We’ve done something to control it because it’s not changing.
VO
Once a month Lee visits with Dr. Robert Beart, the man who manages the care of former President, Ronald Reagan.
...If you recall this is where, just going over things originally…
Doctor’s visit Continues
DR. BEART THOUGHT TRACK
SUPER:
Dr. Robert Beart University of Southern California School of Medicine
For his original tumor, the survival rates are about 55 to 60% in five years. For somebody that has recurrence like this, probably the best statistics are 20 to 30% at five years. In his particular case because the tumor is so large, it’s probably substantially less than that.
Beart at xray board
...but we’re going to have to watch it and get xrays every so often and if we see a change we’ll deal with it then.
Examination Continues
VO
Yet despite the gloomy prognosis there’s hope for Lee. Dr. Beart heads a team of scientists at the University of Southern California who are on the cusp of a gene therapy breakthrough that could save Lee’s life.
Dr. Maria Gordon’s Lab Slides
Is this from the control animal now…
VO
The key research comes from the labs of Dr. French Anderson under the guidance of Dr. Maria Gordon and and Dr. Frederick Hall.
Dr. Gordon at microscope
Maria:
Looks like it is pretty cellular and all the cell lines are represented.
VO
What they’ve discovered is a gene that’s responsible for the growth of cancer cells.
VO
By specially engineering another gene that stops that cell growth, and by designing a vehicle to deliver that gene called a vector, the team has developed a powerful cancer therapy.
DR. GORDON GRAB IN VISION
SUPER:
Dr. Maria Gordon University of Southern California School of Medicine
...so we are really at the cutting edge of being able to find a solution to prolong the life if not hopefully to cure it.
DR ANDERSON GRAB IN VISION
SUPER:
Dr. French Anderson Director, Gene Therapy Laboratories University of Southern California School of Medicine
...what Dr. Gordon and Dr. Hall have done is to package this gene within a viral vector which then is engineered to go to the area of pathology, and the hope is that by doing that and concentrating the viral vector right in the area of a cancer that enough cancer cells will get the gene that blocks their cell division to be able then to hopefully eliminate the cancer. It can work beautifully in animal models, but of course human beings are a another matter.
Dr. Hall
So we’re able to put the vector into the blood stream and have it find the lesion.VODr. Hall is the molecular biologist who found the cancer gene and did the engineering.
Dr. Hall
Here we have the liver of a mouse that’s been penetrated by the cancer cells and untreated we see the large tumor masses. After repeated infusions of the targeted, injectable vectors bearing the therapeutic gene, we have dramatic reduction in the tumor size, volume and mass in these animals.
DR MARIA GORDON GRAB IN VISION
...What it will mean for Lee would be that he would live to be--to fulfill his career as an actor and have a good life.
LEE DUPREE GRAB IN VISION
I like the idea of somebody coming in, trying to help. I like that. I like that a lot because you know that there's somebody trying to do something.
Bill Haseltine in Car
Music from cocktail party
Cocktail Party at High Tech Awards
Continue music
Bill Haseltine in Car
VO
There are also many companies banking on the wonders of gene therapy. Dr. Bill Haseltine runs Human Genome Sciences. He’s betting this 6 billion dollar biotech firm, and his reputation, on this new branch of medicine.
Cocktail Party
VO
Tonight he’s come to the Maryland High Tech Council Awards to accept the honor for best biotech company of the year.
Opening of award banquet
It’s a pleasure to welcome all of you to the Council’s Annual dinner and awards ceremony.
VO
Dr. Haseltine is using the millions raised by his firm to create a new type of pharmaceutical company with a new type of drug.
BANQUET DINNER HASELTINE THOUGHT TRACK
Super:
William Haseltine Chairman & Chief Executive Officer Human Genome Sciences
They won’t be more chemicals. They will be drawn from the human substances - our genes, our proteins, our antibodies, and our cells. That with that medicine, we will be able to do things for disease that we haven’t been able to do before - rebuild the body from the inside out. Replace and repair what is damaged by disease, injured by trauma, and eventually worn by time.
Award Ceremony
Haseltine
With your help we can make this a healthier world, thank you.
HGS Labs
VO
In the labs of Human Genome Sciences no one is sequencing the human genome. They’re taking the next step: working out what the genes do.
HGS Biology Lab
VO
For months scientists here have tested a protein called BLYS.
VO
Proteins are made by the genes and regulate everything from our breathing to our body temperature. At HGS they discovered that BLYS played a critical role: it triggered the body to make antibodies. For a former AIDS researcher like Dr. Haseltine it was a dramatic breakthrough.
HASELTINE GRAB IN VISION
I would call it the Moby Dick of immunology. Nobody found it. Using a very systematic approach, we did find it. In less than a year from that discovery of what this molecule did, we believe we’ll have that as a drug in patients. The first patients we hope to treat are patients with inherited immune deficiency. There are about 4,000 in the United States. They have no effective treatment today.
VO
The gene that produces BLYS isn’t the only one HGS has found. NATSOTVOThe company has isolated 14 thousand of the most medically promising genes and applied for patents on 8 thousand of them.
FRANCIS COLLINS GRAB IN VISION
I think it would be unfortunate if a large fraction of the information about us, the biological instruction book, were tied up in a mesh of licensing and patenting regulations, that made it difficult for anybody who wants to study this information to do so.
BILL HASELTINE GRAB IN VISION
Dr. Collins is not afraid of patents. Dr. Collins has filed patents of his own, on human genes, and their medical uses. Dr. Collins is a government official, who like all government officials’ job is to create technology to benefit all of us. His fear is a fear of being beaten to sequencing the human genome. And, if he is beaten, it’s good for humanity, because it means it’s happened more quickly.
DR COLLINS GRAB IN VISION
...there has to be a balance here and I share the European concern about whether it is really a good thing to have so much of this information, which is so basic, so far upstream of any products, tied up in patent protections.
BILL HASELTINE GRAB IN VISION
...without a patent that protects a product, or without a patent that protects a means to discover a drug, most -- and I would venture to say, all pharmaceutical companies -- would not develop drugs.
Lauren at physio class struggling
...Alright, go ahead, stand up.
VO
For Lauren Reimer, the outcome of this war over patents is critical.
...Can you put your arms up? OK now stand up.
VO
Lauren was born with a rare genetic disorder called congenital myasthenia. It stops messages from her brain getting to her muscles.
VO
Every week she visits a physiotherapist with her mother, Patti. But Lauren is still so weak she has a special tube in her throat for breathing in case the muscles in her neck collapse. VOFor Lauren, and her family, it’s always been a struggle. ActualityLauren: It’s too hardPhysio : Try it again, OK, good job.
Lauren baby pics
Music
THOUGHT TRACK BOB REIMER
Well, at the beginning, they said she wasn’t going to make it. I felt she was going to make it all along. I just felt a very strong bond between Lauren and I. I know when she would be laying there, so sick she couldn’t even open her eyes, I would read to her and just do different things. Talk to her and try to make her feel like there was someone there for her.
BOB REIMER GRAB IN VISION
SUPER:
Bob Reimer
...Because I felt if it was to be that she didn’t make it, I wanted her to know that there was someone there who loved her. And so I would read to her and so forth. And I just felt she was going to make it.
Lauren and Family at Playground on Tire
VO
Ten years on Lauren and her family have learned to live with her disorder. Now, all Lauren wants is to be like everyone else.
LAUREN GRAB IN VISION
…well um, uh, at school, I do the regular things like math and science and health. I don’t go out for recess, but if we do I don’t really do a lot of the things because they won’t let me play with any of the equipment. So I just kind of go on my scooter.
Q: And how does that make you feel?
A: Sad, because I want to go on the equipment.
Breakfast and Rain
Lauren and Father arrive
VO
Bob and Lauren spend a lot of time together. Every week they have breakfast at their local diner before Lauren heads off to school.
Bob:
How are you feeling this morning, OK?
Lauren:
I guess so.
Bob & Lauren at Table
Lauren struggling to eat her food.
VO
Bob is an ex-marine and he’s dedicated his life to finding a cure for his daughter.
B:
Swallow it, OK, remember what I told you, you’ve got to keep eating so you can gain bit of weight, doll.
Diner Sequence continues
BOB REIMER
I just keep hoping and praying that we get to the right researchers, we get to the right doctors to help her. And I keep emphasizing to her that one day there will be an answer and hopefully we’ll be right there to get it.
VO
At the moment there’s only one doctor in the world trying to find the gene that causes Lauren’s disorder. Bob fears one of the gene-hunting companies may already have it, and the cost of getting access to it will be prohibitive.
BOB REIMER GRAB IN VISION
If it got to the point where they were telling the small researchers, like the one that Lauren sees, that that information has to be paid for, then I would have a problem with that.
FRANCIS COLLINS GRAB IN VISION
That’s the kind of outcome people are worried about. Too many toll booths on the road to discovery could end up making people not want to travel on the road.
BILL HASELTINE GRAB IN VISION
SUPER:
Dr. William Haseltine Chairman & CEO Human Genome Sciences
...nobody, neither human genome sciences, or other private companies, exercises their patent rights against university scientists, who are doing the work - research, for research sake. The only time that patent rights get enforced is when people try to expropriate your discoveries - whether you’re a university scientist, a government scientist, a pharmaceutical discovery scientist, for their own profit.
FRANCIS COLLINS GRAB IN VISION
If you imagine that the genome has been parceled up into a lot of territory that has fences around that says, ‘this part is already claimed,’ then somebody who has a really good idea of how tens of thousands of genes operate together in health or disease may find they have to do an awful lot of legal work before they can do the experiments because they have so many different groups they have to get licenses from, and maybe royalties that are going to be so onerous it won’t be worth their while to do the experiment at all.
BILL HASELTINE GRAB IN VISION
It’s a complete smoke screen. Nobody inhibits academic research with patents on human genes. We don’t - nobody does.
Sunrise/Boat Sequence at Cape Fear
Music
VO
For early explorers North Carolina’s Cape Fear coast was a place of desolation and dread. A naked elbow of shoals that caught the roll of the Atlantic as it swept from the Arctic to the Gulf of Mexico. A place to beware.
Pictures of Intercoastal waterway
Engine bubbling away
Terri and Harry working on the boat.
VO
For Terri Seargent, Cape Fear was a dream come true – after years of hard work in the north she and her husband Harry came to Wilmington in search of a better life.
...Would have been nice to take it out this morning, brought some coffee and some bagels...
VO
They both found good jobs, bought a house and this boat. Then, just a few days before Christmas last year, Terri was fired.
TERRI GRAB IN VISION
It crushed me and I’ve never been this crushed in my life and I’m just beginning to pull myself up a little bit to move forward. I don’t have a choice. I have to start looking for a job. I have to start looking for ways of making money so that my family and I can move forward.
Terri and Harry working on boat
...The better we can make it look, the better for selling it. That’s true.
VO
Terri has a genetic disorder called Alpha 1 Antitrypsin Deficiency. A malfunctioning gene fails to make a protein needed to protect her lungs. Without it they slowly deteriorate the way metal rusts in the rain. There’s a treatment but it’s extremely expensive – 35 thousand dollars a year, a cost that was completely covered by Terri’s employer. Unfortunately, the company was self-insured.
TERRI GRAB IN VISION
After the shock wore off a little bit and I could start thinking through what had happened. It strongly occurred to me that no other pieces came together that I was let go because of the cost of my treatment.
VO
Ironically Terri’s former company, Hanover Excess, is an insurance broker. Terri joined them in 1996 and was in charge of the policy processing department where she managed 11 people.
VO
Since the beginning Terri’s received top performance reviews. Each year she was praised for her positive impact on the company, and for her dedication. Last year was no different.
TERRI GRAB IN VISION
...the President of the company along with the Vice President of the company told me that I had a great value to the company and that I was a major part of the team and that my work was greatly needed in the company and that I was very talented and they just went on and just made me feel really good that I was so important. And then they offered a 10% raise
Terri in car
VO
Three weeks later, after returning from a year-end planning session, Terri was called into a meeting. It was five days before Christmas, just two months since she’d started her therapy
TERRI GRAB IN VISION
I was in at quarter after eight in the morning and I walked through the door and the Assistant Manager met me at the door and said Terri come with me up to the conference room. And on our way up I was like, the weekend was so great, you know, I hope we’re going to continue talking about that now and I was really excited about it and I go into the conference room and the President of the company joined us. And they sat down and I sat down and we talked a little bit about the weekend and than the President of the company said, Terri we’re very sorry to tell you but you’re services are no longer needed.
Hanover Exterior
VO
Hanover’s David Parker declined an invitation to speak on camera. But over the phone he stated that Terri had signed a resignation letter, he claimed her managerial skills were not of a level that fit her duties, that her health condition was not an issue and, that she had asked to leave.
TERRI GRAB IN VISION
... it wouldn’t matter if I hated the job, there was no way you’re going to leave your job where you have medical benefits to nothing, to having absolutely nothing. That would be committing medical suicide, physical suicide as well as financial suicide.
Dugald Question off Camera
...But what about the letter of resignation? He says the letter of resignation shows that you voluntarily left the company and, therefore, backs up his argument that your departure was a mutual agreement.
TERRI GRAB IN VISION
Isn’t it sad that when people are in shock that they’re almost coerced into something that they have no time to even think through and that’s how I feel that letter of resignation is; because given a half an hour, maybe only fifteen minutes for me to have a little bit of the shock wore off, there is not way I would have ever written that letter of resignation.
Letter
ex employment commission
VO
The Employment Security Commission of North Carolina has examined Terri’s case and determined that her resignation was forced and that there was no misconduct or substantial fault on her part. In some ways Terri’s lucky. North Carolina is one of the few states with legislation banning genetic discrimination. But there’s no comprehensive federal legislation to protect others in Terri’s position.
FRANCIS COLLINS GRAB IN VISION
SUPER:
Dr. Francis Collins Director, Human Genome Project
...it is quite clear from detailed policy analysis that been done that the only way to solve this is with a federal legislative initiative and there are draft bills that have been widely circulated and endorsed by people highly ranking including the president of the United States, that need just to get passed.
TERRI GRAB IN VISION
So I believe that science is going to come to my rescue. Genetic science is just overflowing every single day with brand new things and my only hope is that Alpha 1 antitrypsin deficiency is significant enough that science will tackle this.
Washington University Labs
Music
VO
In the labs of Washington University – and at half a dozen other facilities around the world – teams are working 24 hours a day to complete the human genome.
Celera Pictures of Control Room.
Music
VO
At Celera Genomics, the super computer is working at full capacity to complete Craig Venter’s 70 million-piece puzzle.
Lauren Swimming
Music
VO
But as one race nears its end, a new one is beginning: the race to redefine modern medicine.
Bob:
Good job, excellent.
VO
Despite having a hole in her throat for the trake, Lauren Reimer loves to swim.
Bob:
Belly up…And despite the academic jealousies, the uncertainty about patents and the years of research ahead, Lauren’s father believes that one day the human genome will give Lauren - and others like her - their lives back.
BOB REIMER GRAB IN VISION
Dr. Maselli is a doctor that she sees. Told me that he promised me also one day he would see her walking down the aisle and to me that would be the happiest day of my life. And like I said, I love Lauren and I hope that day comes about.
Lauren Swimming
END
Music
Credits :
Reporter: Dugald Maudsley
Camera: Simon Banks
Editor: Tom Swartout
Research: Alexis Ward
Composer: Joe Delia
Producer: Dugald Maudsley
VO
It is the essence of life itself: the 6 billion chemical letters that make up our DNA. And along this string of molecules, like pearls on a necklace, groups of letters called genes that carry the code that explains, cell by cell, how we’re created.This is the human genome, the operating system of our body, what some are calling the book of life.
Washington Uni
Music Continues
VO
Deciphering the genome has become the holy grail in the greatest scientific race of our time. Much is at stake. Not only billions of dollars and immense scientific prestige, but the fear that this book of life will not be given to mankind for the benefit of all but locked away for the financial advantage of a few.
Music
Venter on Sailboat
Yelling
VO
They call Dr. Craig Venter the Sorcerer – the same name he gave to his 82-foot racing sloop.
Venter & Crew Sailing
VO
On the rare occasions he can get away from running his four and a half billion-dollar biotech company, Dr. Venter is out on Chesapeake Bay – weather not withstanding.
Hey, when was the last time I was sailing. I don’t care if everyone freezes their ases off, we’re staying out for a while.
VO
To many Venter is a genius – a maverick scientist with an unparalled reputation for finding genes, a multimillionaire with one simple goal: be the first to decode the human genome.
More Venter & Crew sailing
VENTER THOUGHT TRACK
It’s the beginning of the future of medicine. It’s the end of ignorance.
VENTER GRAB IN VISION
At the start of this decade 1991 there were less than 2000 human genes known, at the end of the decade, or start of the new decade, we’re going to have all 75,000 of them.
Dr. Robert Waterston on Bike
street sounds
VO
Racing Dr. Venter to the finish line is one of his old colleagues. Dr. Robert Waterston runs the Genome Sequencing Center at Washington University in St. Louis.
WATERSTON AT TEAM MEETING
Girl:
I’ve got it all set up ready to go, soon as I get it, I’m going to do it…
VO
Dr. Waterston’s lab is a key part of the Human Genome Project, a 3 billion dollar, 13-year public effort that involves hundreds of scientists and half a dozen countries around the world. Dr. Waterston Actuality: And so the reason for the shatter is basically to find out…. Like Dr. Venter, their goal is to be the first to sequence the human genome.
More Meeting
DR. WATERSTON THOUGHT TRACK
this is a once-in-a-species opportunity. This is a more than once-in-a-lifetime.
DR. WATERSTON GRAB IN VISION
…It's akin to the realization in the Renaissance that the earth was not the center of the universe.
Lauren Reimer on Scooter
Natural Sound
VO
The scientists aren’t the only ones in the race. Ten-year-old Lauren Reimer has a genetic disorder that makes her so weak she can barely walk. Decoding her faulty gene, and engineering a new one is her only hope for a cure.
Lauren in playground with Family
Playground Sounds
BOB REIMER THOUGHT TRACK
…Lauren’s disorder is very rare, part of the solution will be finding the gene.
BOB REIMER GRAB IN VISION
And to do that, the genome is very important.
Management Meeting at Celera Exterior of Celera I don’t have a quick answer but I’ll get Laudel..Gene is the one who is really concerned so…
CU Venter
Venter:
I just want you to know that amongst your other number one priorities this is one as well.
VO
Dr. Craig Venter is a man in a hurry. And there’s a lot riding on getting the genome first.
DR. VENTER GRAB IN VISION(Continuation of above)
SUPER:
Dr. J. Craig Venter
President & Chief Scientific Officer Celera Genomics
can’t go fast enough, you can’t make discoveries fast enough. So, in terms of really changing medicine, we don’t have the luxury of a slow academic pace just to treat it as an academic project, this really affects people’s lives.
Celera Computer Facilities
VO
To satisfy his obsession with speed, Craig Venter assembled the largest civilian computer facility in the world.
It’s these machines that catapulted him to the front of the race and form the backbone of his business plan.
Control Room
VO
Celera Genomics is an Internet company run from this control room. It plans to publish the raw human genome sequence for free. But it will charge from five thousand to 50 million dollars for access to its analyzed data.
VO
And it’s the computers that allow Dr. Venter to use a radical new strategy to reassemble the book of life at lightening speed. He calls it the Whole Genome Shot Gun Method because it begins by blasting the genome into 70-million piecessmall enough that a computer can decode.
VENTER GRAB IN
… and then it’s a giant jigsaw puzzle to put back together. Scientists like puzzles, this is a puzzle that we need very large computers to help solve, but it’s a new approach that allows it to go very rapidly in one place.
Time Lapse at Washington University
Music – hurried and busy
VO
Meanwhile at Washington University, the public project operates very differently.
Music Up
VO
Unlike Celera, and other commercial gene- hunters, every day the Human Genome Project publishes its raw data on the Internet every day.
Music Up
VO
As well, the process is much more labor intensive because here they start with a step that Dr. Venter skips: mapping.
Petrie Dish Sequence
VO
If our DNA was a road made up of chemical letters stretching across the country, mapping finds the landmarks and uses them to work out where on the road each letter belongs. To do this, the public project cuts up the DNA, clones each piece thousands of times then uses the copies to laboriously rebuild the road map.
Sequence machines being set up.
VO
Then, just like at Celera, each section of road is cut up into even smaller pieces. A machine then reads each chemical and marks it with a color.
VO
Then, using the map, each decoded section is returned to its place on the road and the process is repeated until the entire genome is complete from one end to the other.
Dr. Francis Collins in Office
“…I know his email is not working that’s why I’m calling rather than sending a note.”
VO
Overall it’s a far slower method than Celera’s, but Dr. Francis Collins, the man in charge of the human genome project, argues it’s the only way to ensure an accurate result.
FRANCIS COLLINS GRAB
SUPER:
Dr. Francis Collins
Director, National Human Genome Research Institute.
The private efforts are doing what we call a rough draft, where they sequence a lot of DNA, but they don’t really take responsibility for putting it altogether correctly. There will be gaps, there will be mistakes in the assemblies, there will still be an incredible amount of useful information, but it will not be a complete contiguous highly accurate product, which we would want for all-time.
CRAIG VENTER GRAB
Francis Collins has the job of trying to defend a multi-billion dollar budget for doing the same thing a small biotech company is doing with 50 people. And he’s… and it helps if you’re trying to defend a budget to create an enemy and he’s trying to create an enemy out of us.
FRANCIS COLLINS GRAB
This is the book of life. Are we going to accept a book that is going to have some missing pages, a lot of typos, a lot of mistakes, chapters that have been scrambled and something shouldn’t be there that is. Now that might be okay for a first look, but that isn’t what we want in the long run, the public effort will do it right.
CRAIG VENTER GRAB
Our work will be of the absolute highest scientific quality. Our sequencing accuracy will be a higher sequencing accuracy than done by any group in the world.
LA Scenic Shots
Atlantic TV Field Tapes
VO
While the animosity between the public and private camps over method may be intense, the real competition is over who will control the human genome and the medical breakthroughs it will unleash.
Dr. French Anderson and Lab
Are the tissue samples ready…Ya, I’m going to go get them.
VO
Dr. French Anderson is the father of gene therapy – a revolutionary branch of medicine.
VO
For 35 years he’s worked to find ways to use our genes to cure disease. The method he pioneered is deceptively simple.
DR. ANDERSON THOUGHT TRACK
… gene therapy is simply the putting of a good gene into a patient’s cell to take the place of a bad gene or a gene that doesn’t function properly.
VO
As Dr. Anderson discovered, when the code in a gene is incorrect it sends out a faulty message and we get sick. And he believes that once the human genome is decoded the future of gene-therapy will be unlimited.
DR FRENCH ANDERSON GRAB
SUPER:
Dr. French Anderson Director, Gene Therapy Laboratories University of Southern California School of Medicine
Medicine does not now cure much of anything. If you have something that an antibiotic can treat, a bacterial infection, you can cure it. If you have appendicitis, you can be cured by an operation. But almost every other disease, all we as physicians do is treat the symptoms in order to allow the body time to heal itself. What gene-based medicine will do over the next century is to revolutionize the whole process of medicine. Diseases can be treated at their core which will mean, at the gene level.
Lee Dupree Taking Medicine
Lee:
One day I’m going to get out there and play football againHilda: Just like you used to hunh?VO: Lee Dupree has colorectal cancer. Five years ago doctors removed his rectum to save his life.
Lee:
I have to take this crap every day.
VO
A year ago when Lee thought he had the cancer beat, it came back again.
Lee:
Man, I tell you, I've never felt that bad about anything in my life. Nothing.
LEE DUPREE GRAB IN VISION
It put a stop on my life. Stopped my life, just like that.
Lee’s acting shots
VO
It wasn’t always like this. Lee had a thriving career as a journeyman actor. Over the last two decades he’s appeared in more than 20 plays and movies. But the cancer’s put an end to that.
LEE DUPREE GRAB IN VISION
it takes a very big chunk out of your life. Sometimes when I'm here I just start crying. I just start crying because
Doctor's visit
There’s still an abnormality there. I don’t think we can say we’ve eradicated the tumor. We’ve done something to control it because it’s not changing.
VO
Once a month Lee visits with Dr. Robert Beart, the man who manages the care of former President, Ronald Reagan.
...If you recall this is where, just going over things originally…
Doctor’s visit Continues
DR. BEART THOUGHT TRACK
SUPER:
Dr. Robert Beart University of Southern California School of Medicine
For his original tumor, the survival rates are about 55 to 60% in five years. For somebody that has recurrence like this, probably the best statistics are 20 to 30% at five years. In his particular case because the tumor is so large, it’s probably substantially less than that.
Beart at xray board
...but we’re going to have to watch it and get xrays every so often and if we see a change we’ll deal with it then.
Examination Continues
VO
Yet despite the gloomy prognosis there’s hope for Lee. Dr. Beart heads a team of scientists at the University of Southern California who are on the cusp of a gene therapy breakthrough that could save Lee’s life.
Dr. Maria Gordon’s Lab Slides
Is this from the control animal now…
VO
The key research comes from the labs of Dr. French Anderson under the guidance of Dr. Maria Gordon and and Dr. Frederick Hall.
Dr. Gordon at microscope
Maria:
Looks like it is pretty cellular and all the cell lines are represented.
VO
What they’ve discovered is a gene that’s responsible for the growth of cancer cells.
VO
By specially engineering another gene that stops that cell growth, and by designing a vehicle to deliver that gene called a vector, the team has developed a powerful cancer therapy.
DR. GORDON GRAB IN VISION
SUPER:
Dr. Maria Gordon University of Southern California School of Medicine
...so we are really at the cutting edge of being able to find a solution to prolong the life if not hopefully to cure it.
DR ANDERSON GRAB IN VISION
SUPER:
Dr. French Anderson Director, Gene Therapy Laboratories University of Southern California School of Medicine
...what Dr. Gordon and Dr. Hall have done is to package this gene within a viral vector which then is engineered to go to the area of pathology, and the hope is that by doing that and concentrating the viral vector right in the area of a cancer that enough cancer cells will get the gene that blocks their cell division to be able then to hopefully eliminate the cancer. It can work beautifully in animal models, but of course human beings are a another matter.
Dr. Hall
So we’re able to put the vector into the blood stream and have it find the lesion.VODr. Hall is the molecular biologist who found the cancer gene and did the engineering.
Dr. Hall
Here we have the liver of a mouse that’s been penetrated by the cancer cells and untreated we see the large tumor masses. After repeated infusions of the targeted, injectable vectors bearing the therapeutic gene, we have dramatic reduction in the tumor size, volume and mass in these animals.
DR MARIA GORDON GRAB IN VISION
...What it will mean for Lee would be that he would live to be--to fulfill his career as an actor and have a good life.
LEE DUPREE GRAB IN VISION
I like the idea of somebody coming in, trying to help. I like that. I like that a lot because you know that there's somebody trying to do something.
Bill Haseltine in Car
Music from cocktail party
Cocktail Party at High Tech Awards
Continue music
Bill Haseltine in Car
VO
There are also many companies banking on the wonders of gene therapy. Dr. Bill Haseltine runs Human Genome Sciences. He’s betting this 6 billion dollar biotech firm, and his reputation, on this new branch of medicine.
Cocktail Party
VO
Tonight he’s come to the Maryland High Tech Council Awards to accept the honor for best biotech company of the year.
Opening of award banquet
It’s a pleasure to welcome all of you to the Council’s Annual dinner and awards ceremony.
VO
Dr. Haseltine is using the millions raised by his firm to create a new type of pharmaceutical company with a new type of drug.
BANQUET DINNER HASELTINE THOUGHT TRACK
Super:
William Haseltine Chairman & Chief Executive Officer Human Genome Sciences
They won’t be more chemicals. They will be drawn from the human substances - our genes, our proteins, our antibodies, and our cells. That with that medicine, we will be able to do things for disease that we haven’t been able to do before - rebuild the body from the inside out. Replace and repair what is damaged by disease, injured by trauma, and eventually worn by time.
Award Ceremony
Haseltine
With your help we can make this a healthier world, thank you.
HGS Labs
VO
In the labs of Human Genome Sciences no one is sequencing the human genome. They’re taking the next step: working out what the genes do.
HGS Biology Lab
VO
For months scientists here have tested a protein called BLYS.
VO
Proteins are made by the genes and regulate everything from our breathing to our body temperature. At HGS they discovered that BLYS played a critical role: it triggered the body to make antibodies. For a former AIDS researcher like Dr. Haseltine it was a dramatic breakthrough.
HASELTINE GRAB IN VISION
I would call it the Moby Dick of immunology. Nobody found it. Using a very systematic approach, we did find it. In less than a year from that discovery of what this molecule did, we believe we’ll have that as a drug in patients. The first patients we hope to treat are patients with inherited immune deficiency. There are about 4,000 in the United States. They have no effective treatment today.
VO
The gene that produces BLYS isn’t the only one HGS has found. NATSOTVOThe company has isolated 14 thousand of the most medically promising genes and applied for patents on 8 thousand of them.
FRANCIS COLLINS GRAB IN VISION
I think it would be unfortunate if a large fraction of the information about us, the biological instruction book, were tied up in a mesh of licensing and patenting regulations, that made it difficult for anybody who wants to study this information to do so.
BILL HASELTINE GRAB IN VISION
Dr. Collins is not afraid of patents. Dr. Collins has filed patents of his own, on human genes, and their medical uses. Dr. Collins is a government official, who like all government officials’ job is to create technology to benefit all of us. His fear is a fear of being beaten to sequencing the human genome. And, if he is beaten, it’s good for humanity, because it means it’s happened more quickly.
DR COLLINS GRAB IN VISION
...there has to be a balance here and I share the European concern about whether it is really a good thing to have so much of this information, which is so basic, so far upstream of any products, tied up in patent protections.
BILL HASELTINE GRAB IN VISION
...without a patent that protects a product, or without a patent that protects a means to discover a drug, most -- and I would venture to say, all pharmaceutical companies -- would not develop drugs.
Lauren at physio class struggling
...Alright, go ahead, stand up.
VO
For Lauren Reimer, the outcome of this war over patents is critical.
...Can you put your arms up? OK now stand up.
VO
Lauren was born with a rare genetic disorder called congenital myasthenia. It stops messages from her brain getting to her muscles.
VO
Every week she visits a physiotherapist with her mother, Patti. But Lauren is still so weak she has a special tube in her throat for breathing in case the muscles in her neck collapse. VOFor Lauren, and her family, it’s always been a struggle. ActualityLauren: It’s too hardPhysio : Try it again, OK, good job.
Lauren baby pics
Music
THOUGHT TRACK BOB REIMER
Well, at the beginning, they said she wasn’t going to make it. I felt she was going to make it all along. I just felt a very strong bond between Lauren and I. I know when she would be laying there, so sick she couldn’t even open her eyes, I would read to her and just do different things. Talk to her and try to make her feel like there was someone there for her.
BOB REIMER GRAB IN VISION
SUPER:
Bob Reimer
...Because I felt if it was to be that she didn’t make it, I wanted her to know that there was someone there who loved her. And so I would read to her and so forth. And I just felt she was going to make it.
Lauren and Family at Playground on Tire
VO
Ten years on Lauren and her family have learned to live with her disorder. Now, all Lauren wants is to be like everyone else.
LAUREN GRAB IN VISION
…well um, uh, at school, I do the regular things like math and science and health. I don’t go out for recess, but if we do I don’t really do a lot of the things because they won’t let me play with any of the equipment. So I just kind of go on my scooter.
Q: And how does that make you feel?
A: Sad, because I want to go on the equipment.
Breakfast and Rain
Lauren and Father arrive
VO
Bob and Lauren spend a lot of time together. Every week they have breakfast at their local diner before Lauren heads off to school.
Bob:
How are you feeling this morning, OK?
Lauren:
I guess so.
Bob & Lauren at Table
Lauren struggling to eat her food.
VO
Bob is an ex-marine and he’s dedicated his life to finding a cure for his daughter.
B:
Swallow it, OK, remember what I told you, you’ve got to keep eating so you can gain bit of weight, doll.
Diner Sequence continues
BOB REIMER
I just keep hoping and praying that we get to the right researchers, we get to the right doctors to help her. And I keep emphasizing to her that one day there will be an answer and hopefully we’ll be right there to get it.
VO
At the moment there’s only one doctor in the world trying to find the gene that causes Lauren’s disorder. Bob fears one of the gene-hunting companies may already have it, and the cost of getting access to it will be prohibitive.
BOB REIMER GRAB IN VISION
If it got to the point where they were telling the small researchers, like the one that Lauren sees, that that information has to be paid for, then I would have a problem with that.
FRANCIS COLLINS GRAB IN VISION
That’s the kind of outcome people are worried about. Too many toll booths on the road to discovery could end up making people not want to travel on the road.
BILL HASELTINE GRAB IN VISION
SUPER:
Dr. William Haseltine Chairman & CEO Human Genome Sciences
...nobody, neither human genome sciences, or other private companies, exercises their patent rights against university scientists, who are doing the work - research, for research sake. The only time that patent rights get enforced is when people try to expropriate your discoveries - whether you’re a university scientist, a government scientist, a pharmaceutical discovery scientist, for their own profit.
FRANCIS COLLINS GRAB IN VISION
If you imagine that the genome has been parceled up into a lot of territory that has fences around that says, ‘this part is already claimed,’ then somebody who has a really good idea of how tens of thousands of genes operate together in health or disease may find they have to do an awful lot of legal work before they can do the experiments because they have so many different groups they have to get licenses from, and maybe royalties that are going to be so onerous it won’t be worth their while to do the experiment at all.
BILL HASELTINE GRAB IN VISION
It’s a complete smoke screen. Nobody inhibits academic research with patents on human genes. We don’t - nobody does.
Sunrise/Boat Sequence at Cape Fear
Music
VO
For early explorers North Carolina’s Cape Fear coast was a place of desolation and dread. A naked elbow of shoals that caught the roll of the Atlantic as it swept from the Arctic to the Gulf of Mexico. A place to beware.
Pictures of Intercoastal waterway
Engine bubbling away
Terri and Harry working on the boat.
VO
For Terri Seargent, Cape Fear was a dream come true – after years of hard work in the north she and her husband Harry came to Wilmington in search of a better life.
...Would have been nice to take it out this morning, brought some coffee and some bagels...
VO
They both found good jobs, bought a house and this boat. Then, just a few days before Christmas last year, Terri was fired.
TERRI GRAB IN VISION
It crushed me and I’ve never been this crushed in my life and I’m just beginning to pull myself up a little bit to move forward. I don’t have a choice. I have to start looking for a job. I have to start looking for ways of making money so that my family and I can move forward.
Terri and Harry working on boat
...The better we can make it look, the better for selling it. That’s true.
VO
Terri has a genetic disorder called Alpha 1 Antitrypsin Deficiency. A malfunctioning gene fails to make a protein needed to protect her lungs. Without it they slowly deteriorate the way metal rusts in the rain. There’s a treatment but it’s extremely expensive – 35 thousand dollars a year, a cost that was completely covered by Terri’s employer. Unfortunately, the company was self-insured.
TERRI GRAB IN VISION
After the shock wore off a little bit and I could start thinking through what had happened. It strongly occurred to me that no other pieces came together that I was let go because of the cost of my treatment.
VO
Ironically Terri’s former company, Hanover Excess, is an insurance broker. Terri joined them in 1996 and was in charge of the policy processing department where she managed 11 people.
VO
Since the beginning Terri’s received top performance reviews. Each year she was praised for her positive impact on the company, and for her dedication. Last year was no different.
TERRI GRAB IN VISION
...the President of the company along with the Vice President of the company told me that I had a great value to the company and that I was a major part of the team and that my work was greatly needed in the company and that I was very talented and they just went on and just made me feel really good that I was so important. And then they offered a 10% raise
Terri in car
VO
Three weeks later, after returning from a year-end planning session, Terri was called into a meeting. It was five days before Christmas, just two months since she’d started her therapy
TERRI GRAB IN VISION
I was in at quarter after eight in the morning and I walked through the door and the Assistant Manager met me at the door and said Terri come with me up to the conference room. And on our way up I was like, the weekend was so great, you know, I hope we’re going to continue talking about that now and I was really excited about it and I go into the conference room and the President of the company joined us. And they sat down and I sat down and we talked a little bit about the weekend and than the President of the company said, Terri we’re very sorry to tell you but you’re services are no longer needed.
Hanover Exterior
VO
Hanover’s David Parker declined an invitation to speak on camera. But over the phone he stated that Terri had signed a resignation letter, he claimed her managerial skills were not of a level that fit her duties, that her health condition was not an issue and, that she had asked to leave.
TERRI GRAB IN VISION
... it wouldn’t matter if I hated the job, there was no way you’re going to leave your job where you have medical benefits to nothing, to having absolutely nothing. That would be committing medical suicide, physical suicide as well as financial suicide.
Dugald Question off Camera
...But what about the letter of resignation? He says the letter of resignation shows that you voluntarily left the company and, therefore, backs up his argument that your departure was a mutual agreement.
TERRI GRAB IN VISION
Isn’t it sad that when people are in shock that they’re almost coerced into something that they have no time to even think through and that’s how I feel that letter of resignation is; because given a half an hour, maybe only fifteen minutes for me to have a little bit of the shock wore off, there is not way I would have ever written that letter of resignation.
Letter
ex employment commission
VO
The Employment Security Commission of North Carolina has examined Terri’s case and determined that her resignation was forced and that there was no misconduct or substantial fault on her part. In some ways Terri’s lucky. North Carolina is one of the few states with legislation banning genetic discrimination. But there’s no comprehensive federal legislation to protect others in Terri’s position.
FRANCIS COLLINS GRAB IN VISION
SUPER:
Dr. Francis Collins Director, Human Genome Project
...it is quite clear from detailed policy analysis that been done that the only way to solve this is with a federal legislative initiative and there are draft bills that have been widely circulated and endorsed by people highly ranking including the president of the United States, that need just to get passed.
TERRI GRAB IN VISION
So I believe that science is going to come to my rescue. Genetic science is just overflowing every single day with brand new things and my only hope is that Alpha 1 antitrypsin deficiency is significant enough that science will tackle this.
Washington University Labs
Music
VO
In the labs of Washington University – and at half a dozen other facilities around the world – teams are working 24 hours a day to complete the human genome.
Celera Pictures of Control Room.
Music
VO
At Celera Genomics, the super computer is working at full capacity to complete Craig Venter’s 70 million-piece puzzle.
Lauren Swimming
Music
VO
But as one race nears its end, a new one is beginning: the race to redefine modern medicine.
Bob:
Good job, excellent.
VO
Despite having a hole in her throat for the trake, Lauren Reimer loves to swim.
Bob:
Belly up…And despite the academic jealousies, the uncertainty about patents and the years of research ahead, Lauren’s father believes that one day the human genome will give Lauren - and others like her - their lives back.
BOB REIMER GRAB IN VISION
Dr. Maselli is a doctor that she sees. Told me that he promised me also one day he would see her walking down the aisle and to me that would be the happiest day of my life. And like I said, I love Lauren and I hope that day comes about.
Lauren Swimming
END
Music
Credits :
Reporter: Dugald Maudsley
Camera: Simon Banks
Editor: Tom Swartout
Research: Alexis Ward
Composer: Joe Delia
Producer: Dugald Maudsley