*Remarks have been anonymized. They are not necessarily verbatim.
"We need appropriate degrees of accountability for genomic systems 40 or 50 years from today."
"Watching someone you love die illuminates the hypocrisy in all medical systems."
"Academia is a priesthood, and it’s time for lay governance that empowers the patient."
"Tenure is useless unless you do something that would get you fired without it."
"As a member of the steering committee, I'm smack in the middle of keeping my institution out of the newspapers."
"We set our policies based on atrocities like Tuskegee and Nuremberg, but is that process nimble enough?"
"I'm a patient and so is my family. We're not bio-specimen hobbyists."
"The debate gets hijacked by privacy, instead of our deciding what it is we really want and need to do."
"I got ethically concerned about all the database button-pushing that alienates us from the human sources of our data."
"The genetics behind long-term illness just can't be understood unless they're studied over lifetimes."
"It's 'good' science as a means of self-justification – 'how do I get my science accepted as 'good'?'"
"Is your science in the interests of my legal client? I would never advise my client to sign one of those forms!"
"I'm a privacy absolutist! Don't take that breathalyzer or that blood test!"
"Sometimes there is no compromise! They're people, not subjects or genetic biosources!"
"I collect blood and tissue samples. What happens to that stuff? I'm a social worker!"
"My drug of choice was methamphetamine, and I'd really like to know what happened to my brain."
"When we did the Visible Human Project, we understood that ethics applies only to the living, and the law doesn't apply to cadavers."
"We had a free and open data-set, so now our Visible Man is three stories high in that medical library."
"I'm an in-patient, and, as my dad used to say, 'If you're not at the table, you'll be on the menu.'"
"We need to accelerate therapeutic solutions, and the perfect gets in the way of the good!"
"At the rate we're going with human genetics, we're all gonna die having figured out almost nothing."
"I'm from a family of alcoholics, and my role as a clinician is to reduce morbidity and mortality from substance dependence. What are the biological contributions? We know that they are large."
"What on earth is 'de-identified DNA?' How could there even be such a thing? It's like telling someone that their signature is anonymous."
"Since I'm from Cleveland, I'm a veteran of the crack epidemic."
"We're about to get whole individual genome sequences – four hundred gigabytes of data per person. And not just one guy, or ten thousand guys, but hundreds of thousands of people."
"Genetics just hasn't panned out with substance abuse. We've found pretty much nothing. We're trawling for associations, and polluting the research field. It's garbage in, garbage out."
"Those addicts are going to prison for 'moral failings' that may be just bad luck with genetics."
"I've been in computer-law and privacy for thirty years now, and since I'm a law professor, I teach the thieves."
"I'm a social psychologist working with the ethical, legal and social implications of bio-banking."
"We've got people from thirty-five different ethnicities working with Colorado Health and Human Services on the ethics of ethnic genetics."
"I went into ethics philosophy in the hope of acquiring vast personal wealth."
"Medical ethics research is conducted as if we were all sticking needles into babies' eyeballs."
"You can ask 'em, 'What's your favorite color?' and they'll scream, 'That's subject research! Stop that right now!'"
"'Generalizable Knowledge?' What other kind of 'knowledge' is there?"
"How can a fifteen-year-old crack addict give 'informed consent' about genomic bio-banking? That kid doesn't even have a GED."
"The addict had less gray-matter volume in areas of the brain related to behavior inhibition, and his MRI scan showed less decision-making when he was confronted with risks."
"We know there's a genetic variant in the nicotine receptor – but that's like, 'So what?' Are we overselling genetics? Do we really need to be collecting this data at all?"
"The first full human-genome scan cost three billion dollars, in the 90s – and soon they'll cost a thousand dollars each."
"We'll genetically compare the cancer cells to the noncancer cells within the same guy – and we'll nail those tumor specimens."
"We might scan the entire American population in the national interest."
"Should we watch as healthy people get sick – or just scan the sick people, and try to back-project what went wrong with them?"
"To have your Data Access Request approved, you have to promise not to try to re-identify the de-identified."
"You would have to be an authorized scientific investigator." "And they're always honest?" "Yes, that is our operating assumption."
"You apply to the Data Access Committee, you get the secret handshake, and you have to download it to a secure area in your home institution."
"We patients want to go to a drugstore and buy a cure off the shelf, and the academics will never put it there. Only 'Evil Big Pharma' can do that for us."
"It's all about a personal rapport with the potential research participant. If you can convince them to sign on during the first hour, then you have them for life."
"We can't just tell addicts, 'Go to a twelve-step program and you'll get well.' We don't watch addicts once they have recovered and are no longer in treatment. So we lose a lot of important data."
"Alcoholics Anonymous and Narcotics Anonymous have always pledged that 'anonymous' part, but, well... just watch Lindsay Lohan."
"There are a lot of samples in people's freezers that would be perfect for a genetic database, but, well, those dead people never signed a consent form."
"Do I trust the investigator, the institution he works for, or the federal government? They don't even trust each other."
"That eighteen-page consent form is way too esoteric for patients to want to bother about – and without specialized training, there is just no way they could possibly understand it."
"They want to be assured that their participation mattered to humanity – even if it takes fifteen years to get any results, and the results are really boring."
"We never show them the scientific black-box, and then we complain about their science illiteracy."
"Nobody's ever gonna learn that some doctor in Hungary wrote some science paper twenty years later about 'their' blood anomaly."
"The feds just say to us, 'We're the government! We'll do whatever we want with your data, doc! We gave you your grant, what else do you need?'"
"I can't call their home and say, 'Hi, I'm the addiction doctor! Is the drug-addicted patient home?'"
"We've never built any platform that doctors, researchers, and patients can all share as interested stakeholders."
"It's the classic spiralling-costs model of software development – but if you can't maintain a biobank for decades of use, then everything fails."
"We've got data just two years old, and we can't figure out how it was generated, or by whom."
"If 'anonymization' comes under fire, then whole sets of rules come tumbling down. The rules always lag behind the science."
"Can I be opportunistic, and squeeze more richness out of old data, even if I'm not within the letter of the law?"
"We have huge problems in the rare-disease community. Drug reps are invading our online support groups. We've got pharma drugs that cost us a hundred and fifty thousand dollars a year."
"We've got seventy thousand people in online communities for eight diseases. Calling ourselves 'customers' or 'participants' breaks down some of that medical mystique and paternalism."
"I know of a locker full of very valuable frozen spinal cords..."
"The reason we call it 'research' is because we don't know what the answer is."
"We're hiring people to run around in front of us with red flags, horseless-carriage style."
"The harm done through our good intentions is the most harmful good."
"He talks to counselors to get off probation, not to stop using cocaine. And his family won't show up at their own home when a drug counselor arrives. In fact, they’ll form support groups to keep us off their backs."
"For us scientists, it's all about our moral responsibility in bureaucratic systems where we've been disempowered."
"We have different ideas and values, but we're all in the same boat – because everybody gets sick and dies."
"Everybody worries about personal DNA privacy, but there are other threats to the patients that we overlook. Group stigmatization. Lack of respect. Lack of recognition. Self-concept damage. Perceived deception. And the tying-up of valuable medical resources."
"My people don't care about any of these 'consent forms.' In my neighborhood, it's all about crime, eating, and keeping the lights on."
"Twila Brase said, 'The Government has your baby's DNA!' and the State of Texas had to destroy five million blood samples."
"We're into 'Interactive Science Publishing' where you distribute your entire data-set along with your scientific paper."
"Our dynamic, granular, informed-consent process involves a template with red, green and yellow dots."
"Now we're supposed to link our biobank to some Estonian medical database! How on earth do we do that?"
"Those patients died because they were 'rotting with their rights on.'"
"We get more 'boutique treatments,' that are underwritten 'by the people for the people,' which most people never see."
"Genetic regulations can't be effective when people can spit in an envelope and mail it to China."
"We're feeding social ideas about 'genetic determinism' and we're undercutting other explanations."
"Our legislation about privacy is always traced straight back to horror stories. We navigate through atrocities and bold-faced wrongdoing."
"American health disparities are not getting better – they're getting worse! Whole sections of our population are essentially disposable."
"Genetic analysis is already changing the genetics of the population. People are selecting against cystic fibrosis and Tay-Sachs disease. And a hundred million unborn girls are missing from the Asian population through sex selection – including the American Asian population."
"If we had to have written consent forms to combat AIDS, Ebola, and SARS, we'd all be dead!"
"We solved our privacy problems by not doing that research. So we protected their privacy, but the people are dead."
"I ran a risk, I knew about the risk, and I got harmed. That's not wrong. I ran a risk, no one told me that risk, and I didn't get harmed. But that was wrong."
"A genetic database can risk exposure to subpoena. It can risk exposure to the War on Terror."
"The thing that worries me most is the black box of the repository. I can't anticipate or control how researchers will use DNA in ten years."
"Informed consent becomes meaningless when the risks are inherently unknowable."
"The researcher has been replaced by a research platform. Nobody can predict anything about how that platform will be run, or expanded, or used."
"It's about provenance, custody and degradation of the data in an ongoing quality-control process – and we're still cleaning up data from the last twenty years."
"The Armed Forces Pathology Collection is the biggest repository in the country. But it's for one purpose, and one purpose only: identifying remains."
"Do we have the guts to have a public debate to politically resolve these issues?"
"Truly representative, nimble, shared-governance models – would the NIH ever let us do that?"
"My prediction is that the genome biobanks will be locked down and burned, just like those Texas bloodspots."
"How do you keep the cops and the lawyers out? Why would blacks or Native Americans ever send their DNA to the feds? And what would happen to them if they don't?"
"We finally got the ear of the director and he just asked us: 'Well, what would you like me to do?' And there was vast disagreement."
"I remain optimistic! Do we have an action plan?"
